The Uveitis Support Group is a patient education and support resource founded in 1996 by Frances Foster MS, NP, the late John Hurley, LISWC, and Dr. Foster due to a need by many patients to connect with others with rare disease. Our mission is to educate patients, their family members and friends, and the medical community about ocular inflammatory disease and to facilitate the exchange of information, emotional support, and mutual aid between members. We are also deeply committed to raising funds to support research into the causes and effective treatment of uveitis.
Destructive inflammatory diseases of the eye such as uveitis are the third leading cause of blindness worldwide. Anyone living with uveitis or other form of ocular inflammatory disease is welcome to join us, along with your family members, friends, and others. There is no membership charge, ever, for participation in our programs or resources. Support Group expenses are underwritten by voluntary, tax deductible contributions to the Uveitis Support Group Fund and by a sustaining grant from Dr. Foster.
We are indebted to our Faculty Sponsor and medical advisor, C. Stephen Foster, M.D., for his encouragement, support, and unbelievable personal commitment to our mission and activities. None of this would have been possible without Dr. Foster’s energy and passion to communicate and reach out to patients everywhere who live with ocular inflammatory disease, and to the physicians who care for them.
The Uveitis/OID Support Group, in addition to our general web page, maintains a web page for kids and parents. We also have an online support group page for kids, parents, and adults that are accessible through the world wide web free of charge to anyone living with ocular inflammatory disease. In addition to these online resources, we have a weekly digital newsletter distributed by email and multiple patient educational brochures. We hold monthly support group meetings using a virtual platform with zoom along with other events. All support group meetings are open and we encourage patients, friends, and family members to join us. The group is free, thanks to generous donations from patients and their friends and family members.
Thinking about joining our online self-help support groups. We now have Facebook groups and community information exchange groups. These free online self-help support groups allow for sharing information, experiences, and support. Dr. Foster and Frances Foster MS, NP are the faculty advisors for our online groups. In addition to this website, the goal of our online self-help support groups is to help you and/or your family cope better with your eye inflammatory disease. As well as teach you and others about your uveitis and the importance of getting appropriate care. We have a group for adults and family members, parents and kids.
Click on a link to join a Group:
Facebook Support Groups – These are closed groups, meaning you must be approved by an administrator to join the group and content will not show up in a public newsfeed. Medical advice is not to be given, this a forum for support.
Adult Support Group for Uveitis/Ocular Inflammatory Disease Facebook Page – A support group for adults with uveitis and ocular inflammatory disease (scleritis, ocular cicatricial pemphigoid, birdshot retinochoiroidopathy, etc) CLICK HERE
Uveitis Parent Support Group Facebook Page– A support group for parents of children with uveitis: CLICK HERE
Teen Support Group Facebook Page – A support group for teens with uveitis and moderated by OIUF staff and young adults with uveitis: CLICK HERE
Read and learn more about our online support groups by in this section that archives selected online exchanges and member profiles of Uveitis Support:
Hi,
Although I was diagnosed with Pars Planitis a long time ago, I have not have any flare-ups since they first got it under control about 15 years ago, (that is until a couple of weeks ago.) I have been researching a lot in the past 2 weeks and have learned a lot, plus have tons of questions about my disease and treatment. Back then, I didn’t know that doctors should look for the “root” of the disease. I am assuming that since I don’t have anything like MS., etc. that mine is auto-immune related.
I see the optho that originally treated me on Monday and I am going to ask a lot of questions. Since I was only 16 at the time, I can’t remember him ever discussing pressures and severity of the inflammation. I do know that it must have been very bad because I had very limited vision when I was diagnosed, but I must have responded to the steroids well. I took oral prednisone (60 mg day), drops and injections. My lingering problems have been floaters and poor night vision, but they have gotten worse about 2 weeks ago, along with increasing blurriness.
I am going to be well-armed with information and a list of questions on Monday for the optho. I feel like I was just diagnosed, instead of years ago, because of all that I have learned recently. I think that anyone that has become inflammation-free should be seen by an optho every couple of years, even without having any symptoms. My optho didn’t recommend it after the first yearly check-up and looking back I don’t think that was a good idea. I haven’t seem him for 14 (??) years, just my optometrist.
Thanks for responding to my question. I live just outside of Parkersburg, West Virginia, – which is in the northwestern part of the state, south of the panhandle.
Missy
HLA-B27-associated uveitis occurs, we think, as a result of some germ or other triggering an autoimmune response. Certain germs have proteins that “look” like part of the HLA-B 27 protein that is present on the surface of the cells of the body in patients who inherit the HLA-B27 gene. And if such a person has the bad luck to come into contact with one of those certain germs at some point in life, the person’s immune system will, of course, attack and kill the germ; but it may also then inappropriately begin to “see” part of the HLA-B27 protein as also being foreign or germ-like, and attack it too, producing damage to the patient’s own cells. This then must be treated, calmed down, with steroids, and if it keeps coming back again and again, other medications may be needed as well.
I grew up in West Virginia, before going off to college and medical school at Duke, and so I know the state pretty well. I have been a visiting professor at the University, and while, to the best of my knowledge, they do not have anyone there who has done a uveitis fellowship, I can tell you that the department of ophthalmology at WVU is very good. Other resources within reasonable distance of you with uveitis experts are the following:
Wishing you all the very best,
Sincerely,
C. Stephen Foster, M.D.
Harvard Medical School
Massachusetts Eye and Ear Infirmary
BOSTON (3/15/2001)
Hello my name is Holly,
My biggest problem is that this [iritis flares] has been happening with my eyes a week before my period for over four years. Both flare-ups happened at that same familiar time. I have had all the blood tests twice now nothing conclusive. Also a colonoscopie because my grandmother had crones. I am 38 and a mother of four I don’t spend much time on myself I don’t have it. Though I have had to slow down. I am just starting to realize how serious this is. I feel like a sitting Duck.
Holly
Two things: 1. First, there can be a relationship between flare-ups and menstrual cycle/hormone level ratios. You can determine whether or not this is probably the case with you by charting basal body temperatures and keeping track of flare-ups on the basal body temperature chart; you will find basal body temperature kits in any pharmacy; it is a real pain to do it for, say 4-6 months, but if you are willing to invest the time and effort into that, you can then take the charts to your gynecologist, who could then order the appropriate blood test for hormone levels at specific times of the month, find out what imbalances you might have, and then prescribe hormonal therapy for you to properly balance the relative amounts of the various hormones in an effort to see if that would stop you from having the flare-ups.
2. Dr. Michael Samson at the New York Eye and Ear Infirmary trained here with me at the Massachusetts Eye and Ear Infirmary, and he, I am sure, would be a wonderful resource for you. I suggest you see him for a consultation now, not just if and when you flare up.
Sincerely Yours,
C. Stephen Foster, M.D. (3/7/2001)
Had a question.
My father has psoriasis (don’t know if that is spelled right) where his immune system is attacking his skin. I was told that this is an immune disease similar to my pars planitis except that it is attacking his skin instead of the eye. So I was wondering if there could be some connection between the two???
Denny
There is a very important connection between psoriasis and uveitis. Pars planitis is a form of uveitis. We sometimes find that a patient with uveitis of “unknown cause” in fact has psoriasis and does not know it; it can be subtle, with very few and small areas of itchy, scaly skin…not the obvious, large areas we tend to think of when we think of psoriasis. And so there is that connection, and you might think about whether or not there is any possibility that you have mild psoriasis and simply did not know it.
Then there is the other connection with positive family history. Some children develop arthritis in childhood, so-called Juvenile Rheumatoid Arthritis. And some of these children are at risk of developing uveitis. It turns out that the strongest factors that are related to the risk of the child developing uveitis include being female, making an autoantibody called antinuclear antibody, being less than 4 years of age when the arthritis begins, and…(get this) having a parent who has psoriasis.
So it appears that there is some genetic factor related to having psoriasis that can be passed on to offspring which may confer onto that offspring a risk for developing uveitis at some point in life. Whether or not any of this is the case with you, I have no way of knowing. But you asked the question about psoriasis and uveitis connections, so there it is. I hope this is helpful or at least interesting to you. With
Sincerest Best Wishes,
C. Stephen Foster, M.D. (3/5/2001)
Click and read . . .
This was an interesting post, Dr. Foster. We were just talking about psoriasis/uveitis a few days ago. I did not think to mention my psoriasis of nails to my doctor when we were doing all the testing for associated diseases, but I will at my next visit. Since I do have the connection, what does that MEAN beyond just knowing what my underlying cause might be? Is it a predictor for the future of either disease?
Nancy
Yes, it has not only prognostic but also therapeutic implications. But I would be remiss to go deeper into this issue with someone whom I have not personally evaluated. If you or your doctor want my further involvement, I suggest either that he/she contact me with the specifics of your case, or that you visit us here at the Massachusetts Eye and Ear Infirmary.
Sincerely,
C. Stephen Foster, M.D.(3/6/2001)
Dear Friends,
A couple of weeks ago, after losing ground with my eye problems all through the month of February, a tooth that has bothered me on and off for the past couple of years started to really ache. So, I went to the dentist, who x-rayed and found an abscess by the root, and sent me home with a prescription for a week’s worth of oral penicillin. This past Thursday, we took out the tooth, and it was quite an easy yank. The next day, I had surprisingly little pain, though there’s still a sore spot when I push my finger into my cheek over the root, which may hopefully go away in a few days or so. We’ll see.
The odd sensations in my eyes seem to be diminishing. So, that’s the good news. One question for medical history buffs: While I was flaring over the last 6 months of last year, I got more relief from boric acid than pred forte, which had stopped working altogether pretty early in the game. My father used boric acid in the autumn as an eye wash for his many allergies. Boric acid in homeopathic potency still helps me sleep at night. I’m wondering: Do ophthalmologists ever use boric acid for eye problems anymore?
Best wishes to all,
Ken
Not much. It’s O.K. as a soothing collyrium/eye wash, but it has no significant medicinal properties for internal problems, i.e. inside the eyeball, like for uveitis; it simply does not penetrate through into the anterior chamber.
But your story does highlight an old, historical relationship that still is valid but which so many “modern” ophthalmologists have forgotten or have never learned: a focus of infection may cause uveitis or may at the very least aggravate uveitis, i.e. make it more difficult to control, make it flare up more, etc. This was well recognized in the first half of the 20th century. Chronic sinus infection, bad (chronically infected teeth/gums), infected ingrown toenail, etc can all do this, and taking care of the focus of infection can make the uveitis go away or at least make it much, much easier to control.
Sincerely,
C. Stephen Foster, M.D. (3/10/2001)
Hello all,
I joined your group a few days ago, and have been reading the items that have been posted. I just turned 36, and was diagnosed with uveitis when I was 18. I will begin with where I am as of today. I am now legally blind. I have lost almost all of my central field of vision in my left eye, and, and going quickly in my right eye due to cataracts from steroid use. As of right now, I have been sent home to go blind. I have been to more specialist than I can count, and have never been able to find one that has the knowledge to treat my disease. (I have anterior, if that makes a difference)
The last specialist that I went to see suggested that I have a t-cell harvest, and do a total immune kill with some type of mustard gas medicine, and then to the t-cell transplant. With the side affects, I opted to not do this. (please advise me if I was wrong) I was previously on methotrexate for appx. 2-3 yrs, with no major response, this was in conjunction with 75 mg. of oral steroids. My body was beginning to show the signs of the steroid abuse with the veins breaking etc.
At that point, all attempts to control the disease were stopped. I was basically sent home to let the disease take its course. It is taking it course rather quickly now. I know that I have inflammation to this date, which is going untreated, at the recommendation of the last specialist that I had been to. I have never been placed on anything other than the Meth., now I am understanding through your site that there are several other things that are available.
I am quite sure that there are many things that I am leaving out, but my story is so lengthy, and I am sure that you have heard it all before. I am in Indiana, and am willing to travel if need be to find someone that has knowledge of this manner of disease.
Maggie
We would be pleased to see you here at the Massachusetts Eye and Ear Infirmary, and will help you register, through Mr. John Hurley of the Social Service Department, for special services offered to those without insurance. You also already know that Dr. Howard Tessler in Chicago is a uveitis expert. And Dr. E. Mitchel Opremcak in Columbus Ohio is superb as well.
The point is (and all the others who have responded to you already have emphasized this), it is very clear that you need the help of those who deal with difficult uveitis cases day in and day out (link to list of uveitis specialists). Unfortunately, it appears that you must be prepared to travel to get the help of such a person. But do it you must; and the consultant whom you choose will undoubtedly want to see you again, too. But he or she will also want to work with an ophthalmologist and perhaps a second specialist (e.g., a rheumatologist or a hematologist) in an effort to give to you the care that you need to preserve the vision you have, and hopefully to get back at least a little of what you have lost.
This will be a very long journey, Maggie, lasting several years. But it is a journey that is very much worth the effort that it takes. Consider it an investment in your future, and in the future of your family.
Sincerely Yours,
C. Stephen Foster, M.D. (3/12/2001)
Hi!
I have heard a lot of people talk about floaters. I am not sure what they are. Do you only get them from a flare up or are they some sort of scar tissue? I think I might have had a couple but they are not always there. Sound familiar?
Thanks for letting me know,
Holly
Floaters are collections of material (especially white blood cells) in the vitreous. New floaters are an indication, I believe, to get checked, since they may be indicators of recurrence of inflammation, or of retinal detachment beginning. Old floaters that drift in and out of the field of vision are just that: old, fixed, pretty permanent material that is trapped in the vitreous gel. They are distracting and aggravating, but typically are known by the patient to be the same old floaters that have been there for a long time.
Hope this helps,
C. Stephen Foster, M.D. (3/12/2001)
Dear Frances,
Thank you so much for your reply. Gabriel was just at his doctor’s office. After a 2 1/2 hour wait he was NOT dilated, received NO acuity check, NO pressure check and my husband had no information about whether the steroid drops he was on for the last two months had helped him or not. Dr. C. simply kept him on the drops and told him to come back in a month. I called the clinic in a fury and was told that Gabriel now has a cataract forming in each eye, something they neglected to mention to my husband.
When I told Dr. M, the clinic director, that I was concerned about all of these steroids he said more aggressive treatment was not necessary. In his mind methotrexate is more aggressive than steroids, although I am beginning to see things differently thanks to you and Michael.
I was told they would not operate on the cataracts until “function became an issue for Gabriel.” And they are having us continue on the drops 4X a ay in both eyes for another month! I am afraid to continue with the drops because of the cataracts and afraid to stop them because they are probably controlling the inflammation to some degree.
I am beginning to question the legitimacy of this steroid approach, and I am frightened because of the cataracts. I would be so grateful if Dr. Foster would evaluate Gabriel. How do I get an appointment?
Laurel
Contact Mary Perini at (617) 573-3968. Tell her that you are coming to the May 5 Special Meeting of the Uveitis Support Group. Tell her that it is your understanding that I am seeing some of my patients, who travel long distances for their appointments with me, in a special clinic I am holding that Saturday morning, prior to the lunch that will be served at noon for the attendees of the Support Group meeting. Tell her that I have agreed, via e-mail, to see your son an a “new patient consultation” in that clinic; it is my understanding that you intend to attend the special May 5 meeting, correct?
And so, I will expect to see you and your son that morning, probably around 9:00 a. m. Bring (do not send) all records and laboratory data with you.
Sincerely Yours,
C. Stephen Foster, M.D. (3/9/2001)
Click and read . . .
I am a new member. My 10 yr. old son was diagnosed 3 1/2 years ago with pars planitis. His vision fluctuates between 20/100 and 20/200. We have done 2 short courses of oral steroids, but have not done anything for 1 1/2 years. Our local doctor wants to do some injections but we were not ready for that with local anesthesia only. Has anyone had experience with these type injections for children?
Thank you.
Kelli
It is clear that your son is in very serious trouble; vision loss to the level you describe is, to me, VERY alarming, especially for a 10 year old. I suggest you move along, rapidly, with your doctor’s advice. You son needs treatment which will abolish the inflammation and get better vision back as soon as possible; the longer macular edema or other vision-robbing complication of pars planitis exists, the lower are the chances that it will be successfully reversed. Move along.
The idea of steroid injection is perfect, in my view, especially if your son has had no problem with elevated pressure in the eye while using steroid eye drops and oral steroids. This will probably have to be done with very brief general anesthesia; it is unlikely that a 10 year old boy will tolerate one or bilateral injections awake. I would remind you, since you have probably already taken Mike’s advice and read material at https://uveitis.org about pars planitis, that steroids may not be the definitive solution, and that continuing, open-ended use of steroid will create as much mischief as the pars planitis itself: cataract, possible glaucoma.
And so please pay very careful attention to the advice about moving on to oral non-steroidal anti-inflammatory agents, cryopexy, immunomodulation, vitrectomy, as needed for accomplishing the real goal: no inflammation, ever, on no steroids.
All the best,
C. Stephen Foster, M.D. (3/10/2001)
Hello everyone….
I haven’t posted in awhile but read everyday. It is great to see all the new members and all the people this website is helping. I really appreciate everyone’s input. I have my [glaucoma] surgery on Thur the 29th, not looking forward to it, but it is what I need to do.
My main question was on the Diamox I am on. I know of few of you mentioned you were on it or had been in the past. I am on 500 mg. a day and can’t wait to get off of it!! I wake up every night with such bad “needles” in my feet, I have to walk around and rub them until it goes away, I am so tired all the time, not hungry, and this last week I wake up and I feel like I have been hit by a truck. My muscles, joints everything aches. Like I have been working out for hours the night before.
I called my doc and he said that is the Diamox and the sooner we can get me off of it the better. Did anyone else have this? If it wasn’t what is keeping my IOP down, I would go off of it quick!!!
Thanks again,
Melissa (3/24/2001)
Yes, it is true that this is a common side effect of Diamox. Some of the things that you describe can be indicative of potassium deficiency, and Diamox can cause potassium loss. You may want to consider getting your blood potassium checked, so that your doctor can prescribe supplemental potassium for you if it is indicated.
Sincerely,
C. Stephen Foster, M.D. (3/24/2001)
What is considered elevated pressure in children? There wasn’t any treatment recommended for this! She told us to keep at the 6 drops [prednisone] a day!
Elizabeth (11/17/2000)
A pressure of 25-30 can usually to tolerated by children for considerable periods without damage to the optic nerve, and many ophthalmologists will simply re-measure the pressure frequently rather than to add yet another drop to an already tedious program of drop administration in a child with a pressure in this range. So I would suggest that you simply trust that your doctor will do this, and that you ask, each visit, how the pressure is, as well as how the inflammation is.
Respectfully,
C. Stephen Foster, M.D. (11/17/2000)
Click and read . . .
My mom wanted me to ask the members here what the range should be for her eyes. She said that they told her the left eye was 17 and the right eye was 18.
Dr. Tessler questioned why she was on Lotemax from her previous doctor. He said that is for pressure and he didn’t act like her pressure was high enough to be on Lotemax. What does everybody else think? I know there was a posting on the ranges a while back, but I can’t find it.
Thanks in advance for all your help. My mom also says “THANKS”!
Happy Holidays to all of you!
Kerri (12/13/2000)
“Normal” eye pressure is anything between about 10mm Hg and 21mm Hg; there are exceptions to this general “rule”, but these are pretty good general guidelines.
Lotemax is a steroid drop used for treating inflammation; it does not “treat” pressure. But its propensity to provoke increased pressure in the eye is less than that of most other steroid eye drops, partly because it is less potent than most others. And so, if a patient with uveitis is having elevated pressure while on other steroid drops, the patient’s doctor may deal with that problem by stopping the more potent steroid drops and substituting Lotemax in their place, hoping to see inflammation remain in control, while at the same time getting rid of the pressure-producing effects of the more potent steroid. Sometimes this works and sometimes it doesn’t.
So in this way one could consider a switch to Lotemax “treatment for pressure”. But in truth Lotemax is not in itself a “treatment” for pressure, i.e. one would never prescribe Lotemax to treat high pressure in someone who just had glaucoma; there are other drops which reduce eye pressure and which are used for treating glaucoma.
Sincerely,
C. Stephen Foster, M.D. (12/14/2000)
Click and read . . .
I was talking to a guy at work this morning and he was saying something about a new chemo treatment that is apparently less harmful to the body. I can’t remember the name of it, though. I know it starts with a P. Has anyone heard anything about it? Is it still in the trials or is it readily available? Has it yet been tested for patients like us?
Ramona (1/4/2001)
Dear Michael, Ramona, and everyone else:
You may want to be careful and skeptical when it comes to rumor and anecdotal stories about this and that being “great” for uveitis, and rely heavily on the experience of individuals who take care of large numbers of patients with uveitis, and on published reports in peer-reviewed journals, of controlled clinical trials.
Bloodletting with leeches and blistering therapy with hot bottles and coins was in fashion for treating uveitis in the late 1800’s and early 1900’s. Great excitement occurred about cyclosporin in the early 1980’s, until it was realized that the doses being used were damaging the kidneys of every patient treated. And this is the same story with FK 506 or Prograf (tacrolimus). It is a transplant antirejection medication with mechanism of action identical to cyclosporin. It is not safer than cyclosporin. We have used it in many patients with uveitis; it works for some and not for others. One of the patient contributors to this site was a treatment failure with Prograf.
The essential point is this: One wants to achieve the goal of no active inflammation and no flare ups, while at the same time getting off all steroids. That goal can usually be achieved through the use of immunomodulatory agents of one sort or another. The choice of agent is best done by an individual who works with patients with uveitis every day, and so has the experience that comes with doing this sort of work, knowing when to move along to a different medication, what to look for in the way of side effects and how to counteract those, etc. It is as much art as science. The perfect medication does not exist, and the wish that someone out there has it is neurotic. It’s a pity, but the truth is that uveitis is a bad deal, and its treatment often must be long, tedious, and complex – no short cuts. We clearly have a very nice resource in Michael, who is willing to be proactive, chase things down for all of you, and help keep it all in perspective.
C. Stephen Foster, M.D. (1/5/2001)
Dear Group,
I am relatively new, having joined last week and have not yet introduced myself! I am 34, female, from the UK and have had Uveitis for three years, currently flaring up every 4-6 weeks. I was so happy to find this group as I know no-one else who has this and answers are very hard to find…so thanks to everyone who set this up and keep it going.
I am between flares at the moment but still have occasional mild stabbing pains in my bad eye and it feels as if there is pressure from inside. The eye is not red and it has only been a couple of weeks since I finished my last course of Pred Forte. The ophthalmologist said it was clear on examination so I decided that perhaps I was imagining the pain and that it would go away … it hasn’t however. Does anyone else have this problem?
I also noticed from your site a number of mentions of skin disorders. Does anyone else suffer from Hives (Uriticaria (sp?) or Nettle Rash)? I get outbreaks of this rather frequently – usually on my arms, legs or neck, but also on my torso, face and scalp. It comes up in minutes (much to the amusement of my children!) gets very swollen and red, itches like crazy and takes a couple of hours to go down again. Have no idea whether any other Iritis sufferers also have this problem or whether I am just lucky! :o)
Best Wishes and Good Health to you all,
Sian (3/18/2001)
It is unclear from your message whether or not you are under the care of a uveitis expert. The fact that you have had your problem for several years and are continuing to have flare ups every few weeks would indicate to me that you probably are not.
I will pass along to you the names and locations and contact information of two superb doctors who did their uveitis fellowship training with me here at the Massachusetts Eye and Ear Infirmary. I realize that your National Health Service may be inflexible with respect to seeing these doctors if they are out of your geographic care location; paying privately for at least one consultation would be, in my view, well worth it to you in the long run.
Mr. William Ayliffe
The Croyden Eye Unit
Mayday University Hospital
London Road
Thornton Heath Surrey, Cr7 7 YE
181-401-3130
Ms. Panagiota Stavrou Compton
Wolverhampton WV 6
8AY
I will ask my staff to forward to you the phone number for Ms. Stavrou on Monday.
And before I am scolded by the American viewers of this site for calling these doctors “Mr.” and “Ms.”, I will simply explain that in the British system (and in all her former colonies which have remained true to much of British tradition), doctors are called Dr. unless they specialize in a surgical specialty, in which case they then once more take on the title of “Mr.” and “Mrs.” or “Ms.”.
Sincerely Yours,
C. Stephen Foster, M.D. (3/18/2001)
Hi everyone,
I’m glad I have found somewhere that people understand the disease I have! Well because I don’t fully understand it!
My name is Julie, I have had Iritis for 12 years since I was 13. The episodes of it were very infrequent (every 2 years or so) up until this past October, when the iritis would not go away until 3 months off medication, after that my eyesight hasn’t been good, I can’t read from the left.
I have just this week told I have pars planitis in the left eye and that’s why I haven’t been seeing well from it. I am taking drops, steroid and non steroid every 2 hours one then the other (every 4 hours each one) I am really hoping that my sight clears up on that side!
My doctor says I do not need glasses, he says they will not help me. I hope to get to know everyone soon and find out all I can about iritis and pars planitis.
Take Care,
Julie (3/18/2001)
Where are you? Who is your doctor? What is your current and past treatment? What is your current level of vision in each eye?
Please read all of the material on all of the pages of https://uveitis.org including the treatment algorithm we advocate for the care of patients with pars planitis.
With Sincerest Best Wishes,
C. Stephen Foster, M.D. (3/18/2001)
Thursday about an hour after waking up the front of my neck looked swollen. I had no pain inside or out. This has happened a couple of times but no one can see the difference. By the end of the day it went away. I have a very thin neck so it actually does not look bad or noticeable. Should I check out with a doctor?
Holly
Yes, you certainly should have this checked out by your primary care physician. The most obvious possibility for episodic swelling in the front of the neck is the thyroid gland. It can become swollen for a variety of reasons, including inflammation, autoimmunity, goiter.
Let us know what it turns out to be.
Best Wishes,
Stephen Foster, M.D. (3/18/2001)
Hello all, Does anyone here have optic neuritis and PP? Steph (3/16/2001)
Where are you? Who is your doctor? Please read all the material on pars planitis at https://uveitis.org. I REALLY dislike getting into this sort of thing over the internet rather then in person with a patient, because of the very high risk of contributing to anxiety rather than enlightenment. And therefore, I beg you to discuss these matters with your doctors…all of them.
However, since you have posted a very important question, I will answer, rather then sit in silence. Several (8 or 9) diagnosable systemic disorders can be associated with pars planitis. About 50% of patients with pars planitis never are discovered to have any associated disease. Of the disorders which can be associated with pars planitis, there are 3 which can also cause optic nerve problems, including optic neuritis. These disorders are multiple sclerosis, sarcoidosis, and cat scratch disease.
Now, having said that (and answered your question), I pray that you do not now go into a tizzy worrying about having one of these things, but rather will bring this to your doctors’ attentions and let them consider whether or not there is anything at all to suggest additional diagnostic studies.
Hoping that this reply will be more helpful than frightening,
C. Stephen Foster, M.D. (3/16/2001)
Click and Read:
Hello Everyone, I’m going over all the material I have about uveitis, in preparation or my visit to the uveitis specialist this week in Rio. I came across a NIH News Released dated May 27, 1997 “New Treatment for Eye Disease Reduces Need for Strong Drugs” It says that “…a purified protein, called retinal S-antigen, given orally to a small group of people with uveitis, allowed them to be weaned off standard treatment drugs, etc….”
Have you heard about this? Are there any developments? Maybe Dr. Foster knows more about it.
Thank you everyone, you’re a wonderful group!
Florandina (3/26/2001)
Yes, I know about it. The National Eye Institute asked me to help them successfully complete the trial, and therefore I am a co-author on the publication. The research results were published in the American Journal of Ophthalmology, and you will find the reference in the “PUBLICATIONS” section of the https://uveitis.org site.
As in so many other instances of prepublication investigator and media hype, so too in this instance the hope and the hype were greater than the actual results, which were, in my opinion, disappointing. One group of patients in the trial were more likely to be able to reduce chemotherapy than the other groups. But the results were not fabulous, and more important, the logistics were and are prohibitive: the material is made from cow eyes; the number of cow eyes required to make the material is enormous, and makes getting large amounts to do a proper trial, much less ongoing therapy, basically impossible; and then there is the concern about mad cow disease these days.
My advice: stick to the mainstream; stick with what is tried and proven, rather than to cling to the hope of some “new” treatment that will be “the answer”, while delaying proper care that you could be receiving now.
Sincerely,
C. Stephen Foster, M.D. (3/27/2001)
Thank you very much for your message on Retinal S-Antigen.
I, like most members of this group appreciate your work, not only as a knowledgeable professional, but as a generous human being who shares some of his spare-time with us who live with this strange disease.
Sincerely,
Florandina
My son was diagnosed with pars planitis 3 years ago atage 7. His vision was 20/200 in both eyes at the time. The only treatment we have done is two short courses of oral prednisone. It improved his vision a little, but he has never tested above 20/100 in either eye. He does not have any systemic disease, as far as test have revealed. I too have wondered about homeopathy, but do not want to do more damage than good.
Brian seems to flair the worst in the spring when seasonal allergies kick in, although his allergies aren’t bad enough for prescription drugs. We were told drops would not be effective for intermediate uveitis. I don’t think we have ever controlled the macular edema and that is my greatest concern.
We live in AR and he was diagnosed at Vanderbilt in Nashville.
Kelli (3/27/2001)
10 year old boy with chronic pars planitis, for 3 years at least, now with vision of 20/100 in each eye, treated only with steroids. Is that about it? Do I understand the essence of it correctly?
Please see my answer to Julie today (click here), and please review all the material at https://uveitis.org. Please also read the materials that Liz can point out to you on this site … postings from others with pars planitis.
Please interact with Mike in order to better understand where your little boy is headed. Mike had pars planitis; he was treated only with steroids. I urge you to interact with him and others on this site with pars planitis in an effort to get a clear sense of where you and your child are headed.
The disease is so sneaky, so insidious, so slowly pernicious, that patient, parents, and doctor alike are often sucked along down the pipe until it’s too late … permanent damage that then robs the patient of ever having normal vision ever again.
And it doesn’t have to be that way. You’re going to have to travel. Consider it an investment in your child’s future. Saint Louis, Barnes Hospital is one possibility for you: Dr. Russel van Gelder. Louisville, Kentucky, University of Louisville, Dr. Henry Kaplan, Chairman of the Department of Ophthalmology is another reasonably close possibility. These men are experts in uveitis. I know of no one at Vanderbilt who has done special training and who therefore is considered an expert in uveitis.
If these two possibilities do not appeal to you, let me know and we’ll refer you to Kansas City or to Columbus Ohio or to Cleveland. Just let me know.
But I must tell you, I am VERY concerned by what you have written to us about your son, and fear greatly for him if you and he remain on the path you are currently traveling.
Sincerely Yours,
C. Stephen Foster, M.D. (3/27/2001)
My name is Ramona and I am 27 living in Indiana. I have been suffering with uveitis for going on 3 years now. I lost my right eye to the disease in March of 2000 and now am going though this again in my left eye. I am just totally devastated by this. It’s bad enough being blind in one eye and now having to go through maybe losing another one to this. Nothing that the doctors do for me really help either. I am not responding to treatment very well.
My thoughts are kinda scattered right now, so please forgive me.
I guess I could start out and tell you my story. I’m sure you are all familiar with everything that happens when you go through this, though. But, bear with me. In February of 1998, I contracted Bell’s Palsy. This is paralysis mainly on the face. At least it’s where I had mine at. It was located on the right side of my face. My mouth would slant to one side, I couldn’t close my right eye at all, everything just seemed to droop and was very numb. This lasted for about a month. My brother gets the same sort of thing about every 2-3 years, so I knew what I was going through when it happened to me. Within two weeks of getting over that, I came down with Strep throat. Really bad. To the point that I couldn’t even hardly breathe for a severely swollen throat. This lasted about a week and a half. Then I went through the normal spring time bout of colds, head and chest. Never thought anything about it. Never even gave it a second thought. I thought that this was just my time to get sick.
In June of 1998, I noticed my right eye was getting kinda foggy like. I couldn’t really see out of it all that well. It was like a permanent shadow over the right side of my vision field. I just thought that I was extremely tired. Where I work, we had just installed a new computer software system that was going haywire and I had been working 12-14 hour days for weeks trying to get the system up and running by then. I was a first time contact wearer at that time, so I thought that maybe I just needed a break from them, so I quit wearing them and started wearing my glasses again.
Well, it just kept getting worse and worse. I didn’t know what was going on. I even went as far as getting a new prescription for my glasses. Nothing helped. One day, I noticed my eye was really scratchy. Like something was in it. I always kept eye drops in my desk. Working like I had been, my eyes would start hurting really bad and I would use those. Well, this time when I did, I mean, talk about incredible pain. My right eye went completely blood red, I was totally sensitive to light, couldn’t stand my computer screen even on the lowest possible brightness, and got an immediate headache. And I got scared then. I didn’t have a clue about what was going on with me. I made a doctor’s appointment for that day after work. I just went to my family doctor. I had no clue it was this serious. And he didn’t make it seem like it was really serious either. He gave me Gentimiacin drops and Econopred drops and told me to use them twice a day. I will never forget that. Twice a day! He said that it was an inflammation and that it would clear up in a couple of weeks.
Well, after a month of severe pain, light sensitivity, headaches, things like that, things wasn’t getting any better. In fact, I was a lot worse. I couldn’t even hardly work. Sunglasses and Tylenol became my new best friends. So, he sent me to an ophthalmologist. Now, I am not here to bash doctors. I really do believe that they have a God-given gift for healing within science, so don’t take me wrong or think bad of me after I say these next few sentences. Anyway, my family doctor sent me to an ophthalmologist. His family has national name recognition in the field of ophthalmology, so I thought, hey, he’s sending me to the best. Well, come to find out, it’s his FATHER that has the name, not the son, which is who I saw. In two months time, 16 appointments, I hadn’t gotten any better. I was really bad. So bad, to the point that it felt like there was so much pressure on my eye and that part of my head, that it was going to explode. By this time, I was off of work, living in a room with all of my windows covered with dark paper. I didn’t watch TV anymore. The light hurt too much. All I did was sit there.
At this time, I still didn’t know what I was dealing with. No one had given me a name for this. They just kept telling me that it was an inflammation in the eye. I remember the day that my dad took me to the hospital finally. He had watched me suffer with this and getting steadily worse for going on four months now. I couldn’t sleep that day. The pain was so bad, every time I would lay down, there was just so much pressure there. I would try to turn over on my stomach for some relief and nothing. I was up all night and all day like this. My dad came home from work hat evening and my eye was almost totally swollen shut. That’s when he packed me up in the car and took me to the hospital. And this is when I found out just how bad I really was and how far gone I really was.
When the ER doctor examined me, he was in total amazement. He couldn’t believe that I had been under a doctor’s care now for 3 months. I had ulcers all throughout my iris, my retina was just a big blob, all swollen and puckered, I had one of the worst cataracts he had ever seen on a person my age, I was a mess. He called in another ophthalmologist from the area. I didn’t get to hear all that was being said, but he was furious. That’s when I found out that this was called Uveitis and that in my case, I was legally and permanently blind in my right eye. I was devastated and can honestly say here that for the first time in my life, I had thought about suicide.
I had always been in perfect health. My whole family is. And now, I’m sitting in this hospital and someone is telling me that this is it. There was no help. The ophthalmologist sent me on to another ophthalmologist that specialized in Uveitis. From there, I went through the Vitrectomy, I went through the numerous steroid shots, the countless appointments. I can say that Dr. Walker did everything in his power to save my eye. I knew going into this that this was all that could be done. He didn’t want me to lose the whole eye. And we failed.
The last surgery I went through was injecting silicone oil into the eye. I wasn’t holding a pressure at all. Normal is roughly in-between a 12-24. I was holding a 2. So, we did the oil shots. That worked and I held a good pressure for about 9 months. Then my eye became once again very red, very painful, swollen, and I was sensitive to light again. I kept thinking, what else is going to happen? Come to find out, my eye decided to go ahead and start making pressure on it’s own coupled with the oil that we already had in there and I had severe glaucoma.
I was at a 46 pressure in two days time. In a matter of a month, my eye had become as Dr. Walker described it “an 8 ball”. There was no iris left. Just one big black dot in the center of my eye. It was at this point that I had had enough. And I made the decision to have it removed. On March 21, 2000, I was wheeled into the operating room, had it removed, and then had a ball of coral implanted. This way, when I would get my prostheses, it would move. I thought that the nightmare was finally over. I was wrong. Like I said in the beginning, I am now in my 2nd month of having it in my left eye now and it’s fast becoming a harrowing experience.
I’m 27 years old and I have to wear bi-focals now. Pred-Forte and Homatropine are my constant companions now. Prednisone at 60 mgs. daily are getting more and more easier to take, even with the bitterness. Pharmacists know me by name now. I’m getting used to my heart seeming to beat out of my chest because of the pills. Sleepless nights are great to catch up on things. I know. It sounds like I am whining. I am really trying to be strong and brave through this, but it’s getting so hard. I see what my family is going through with me. They have had to completely rearrange their lives around me now just to help me make it through my days. I have a beautiful car sitting out front of my house that I can’t even drive anymore. I have a cat that I can’t even tell by looking at her if she’s even breathing or not when she’s asleep. When is this going to end? How much more am I going to have to take?
I see that people on other boards have gone through this for years upon years. I don’t know if I can take that. These past three years have been a living hell for me as it is. I can’t handle the thought of having to go through this another 10. Anyone out there have any pearls of wisdom or advice for me to try and live on?
Ramona
You will see that I have responded to you in the FAQ section on the https://www.iritis.org site. But I will repeat that response here in an effort to ensure that you receive this reply as quickly as possible.
The more that you describe your situation the more I become suspicious that you may have suffered from a rare condition known as Acute Retinal Necrosis Syndrome. ARN is caused by members of the herpes virus family, most notably herpes simplex and herpes zoster (or varicella- zoster, the same virus that causes chicken pox). Thisvirus can also cause Bell’s Palsy. As I pointed out in my prior message to you on the iritis.org FAQ site, iris atrophy is often although not always a feature of iritis caused by the herpes viruses. But in addition to this, in very rare instances, the virus can, during one of its episodes of waking up from hibernation, march down one of the nerves to the retina, allowing the virus to then multiply in the retina, causing inflammation and death (necrosis) of the retina: ARN.
The description you provided about the eye that has been lost sounds compatible to me with a case of ARN. If this istrue, then, sadly, the same may be happening to your remaining eye; the disease can be bilateral, nonsimultaneous, separated in time by months to years. If you have ARN, you should be treated as soon as possible with high dose intravenous antiviral medication; we use acyclovir intravenously. Alternatively, if you have now developed and even rarer condition, Sympathetic Ophthalmia, or simply have bilateral nonsimultaneous posterior or panuveitis, then the treatment would be high dose oral steroids (and probably immunosuppressive therapy).
So, you see, the situation is extremely complex, and the stakes for you are as high as they can get : possible loss of the remaining eye if the problem is not stopped, and soon.
Therefore, I repeat to you that I would advise you in the strongest possible terms to consult immediately with an individual who is by virtue of training and ongoing practice truly expert in uveitis. There may be such an individual close to you whom I do not know. Two whom I do know and have great respect for are: Dr. Howard Tessler in Chicago, Ill, and Dr. E. Mitchel Opremcak in Columbus, Ohio; telephone information will get you to their offices easily.
With my very sincerest wishes for a speedy resolution to this problem.
C. Stephen Foster, M.D. (11/26/2000)
Thanks Holly,
I hope to receive good care myself, only I don’t know the treatments I should be getting, I keep reading that steroids can be harmful over time and the goal is to reduce them, right now I take them but I also take another non-steroid type to reduce the inflammation. should I not be taking steroids at all? should the doctor keep me on meds until the inflammation is completely gone? I thought in pars planitis that the inflammation never goes completely away?
My iritis is not bothering me right now it is the p/p and my eyes are very sore and strained.
Take care,
Julie
I think the point that you should be getting by now is that you should be under the care of someone who is, by virtue of training and experience, truly expert in the diagnosis and care of patients with pars planitis/uveitis. It appears to me that your best bet probably is Dr. Rabinovitch in Toronto, given where you live. I strongly suggest you call his office and arrange for not only an initial consultation but also ongoing care. The other questions and details, such as the length of time steroid therapy is appropriate, etc, is best left to the expert who takes on your care.
Sincerely yours,
C. Stephen Foster, M.D. (3/18/2001)
I was told by my doctor that p/p will always be inflamed, a tad or a lot and he will treat accordingly, I go back on Thursday and I want to have all my questions for him ready….. By using the aggressive treatment Dr. Foster outlined, result (usually) in NO inflammation?
Can I expect No inflammation?? If these meds are used is that the usual outcome? If I continue on the path I am on now, both steroid and non-steroid drops, will I ever achieve NO inflammation?Just gimme the best guess guys!
Thanks,
Julie (3/27/2001)
Let’s see if I can make it more clear than I have done on the web site https://uveitis.org.
I hope that taking the time to outline the FACTS and my OPINIONS about pars planitis and its prognosis, based on published data in peer-reviewed journals, and comparison outcomes data, similarly published, in the way that I have here for you clarifies all remaining questions that you had about this insidious but cruel disease.
Sincerely Yours,
Stephen Foster, M.D. (3/27/2001)
My daughter was diagnosed with Uveitis, when she was 2 1/2. She is now 5 1/2. She is not yet at the point where she stays completely still for her eye exams, which are monthly. So far she has been under General Anesthesia, twice. Now the ophthalmologist wants to do it again. It has been every 6 months for the past 1 1/2 years. I want to find out if this is common, to be put under so often. I am nervous about this, and feel she is being used as an experiment. HELP!
Hope my wording is clear.
Unsigned (4/2/2001)
It sounds as if your daughter is under the care of someone who truly cares, and wants to be certain that he or she can adequately examine the eyes, dilate the pupils, look for cataract, examine the retina, check the pressure, etc. And examinations under anesthesia are common for delivering proper care to children who cannot adequately cooperate. Sometimes that examinations after corneal transplantation occur every 2 weeks for a while.
However, I would emphasize the following two points:
The doctor will not be able to judge whether or not there are inflammatory cells in the anterior chamber when your child is under general anesthesia, examining her through the operating microscope or with the indirect ophthalmoscope; only a slit lamp can enable him or her to do that, and it is unlikely that he or she has such a slit lamp available in the operating room, equipped to be used on a patient who is lying down. Therefore, it is very important for this reason too, not just the avoidance of multiple anesthesias, to get your little girl accustomed to cooperating with the office examination.
Sincerely Yours,
C. Stephen Foster, M.D. (4/2/2001)
Hello, my name is Pam and I’ve suffered off and on with uveitis since ’89. My old ophthalmologist never caught it during my high school and college days, although early-onset glaucoma runs in my family. My take is that he either never caught it OR never bothered to tell me. I’ve had the usual symptoms: photophobia, pain, throbbing, redness, blurry vision, loss of acuity. I finally got a new doctor in ’92 and I haven’t a serious episode since. He put me on Prednisone and atropine, then on Flarex. The latter was far more effective than the others, with fewer side effects. Right now eyes are OK but I’ve lost visual acuity, esp. in the left eye. My doctor has done all the usual underlying causes. Lupus, rheumatoid arthritis, sickle cell, sarcoidosis, diabetes, lymphoma. Everything keeps coming back clean. I haven’t had MS screening, perhaps because I don’t WANT to test positive for MS.
But let me throw this at you. Tell me what you think. My attacks flare up during the late winter and early spring, and then late summer. I seldom have uveitis flare ups in winter or late fall. Could changes in light, air pressure, humidity, air temperature, be factors that trigger the symptoms? So far, the photophobia’s been the most bothersome. I’m back on Flarex for the next ten days until the symptoms cease. BTW, my pupils have shrunk to the size of pin dots…They’ve always been smaller than usual, but now they’re really tiny, even in a darkened room. I have them dilated occasionally but I really don’t want to depend on drops and steroids (which I really don’t want to take because of side effects). I’ve been looking into alternative therapies. What about bilberry supplements? I know it’s effective for improving night vision but how is bilberry with other eye ailments?
Thanks for having me in your group. Sorry for lurking for so long. 🙂
Pam (4/6/2001)
Surly if you have been “lurking” you must know by now that most of us here would be EXTREMELY concerned about you. Bilberry? Already lost vision? Pupils the size of pinpoints?
Where are you? Perhaps we can direct you to an ocular immunologist who devotes his or her life to caring for patients with uveitis, so that you can be properly educated about where you currently stand with respect to vision loss, how likely that is to be permanent, how likely it is that you will, over the next 10 years, lose more on your current approach to your problem, what sensible, realistic alternatives might exist, etc.
I must say, I find it extremely discouraging and troublesome and of great concern to read of someone who has had chronic uveitis, has lost some vision, has damage in the form of adhesions that stick the pupil down to the size of a pin point, and herbal treatment is the approach that is being contemplated.
I wish you the very, very best going forward, and stand ready, if asked, to direct you to an expert on these matters nearest you.
Sincerely Yours,
C. Stephen Foster, M.D. (4/6/2001)
Hi everyone,
Once pupils are adhered and dilating is not helping,what can be done? Is the damage permanent?
Thanks, Joyce (4/6/2001)
Yes, it’s permanent, unless or until surgery is necessary, for cataract, for example. Then the adhesions are physically broken during the surgery.
Sincerely,
C. Stephen Foster, M.D. (4/7/2001)
Liz,
I am usually very able to deal with nausea. This was different, I was violently ill to the point that I was scared to move. Yes, I was vomiting, I could not even keep water down. I have not experienced anything like this until now… And was frankly quite alarmed. Luckily, I had an appointment with the rheumatologist during this time, and with the help of my mother and some strategically placed trash cans was able to make it to the appointment!
I think my rheumy wants to see if this comes back. Perhaps it was a one-of experience, and I will not have it again. If I have it next week, I will definitely be in contact with his office. I was prescribed Phenergan for the nausea. It knocked me out like nothing I have ever experienced. I fell into a deep sleep in class, and came home and slept for four more hours. Trading in one problem for another, it seems.
Thanks for all the advice and sharing your personal experiences. I AM pretty scared. I just feel like I am completely out of control of my life at times, and it is quite rough for me. I know others experience this, and are in much more serious situations medically, so I try not to bring this up, and have been struggling with it on my own.
I will get through this!
Kristin
One way that I dealt with nausea was to focus on how it felt; to “be” in the moment with the nausea, and to let it pass. Another approach is to take anti-nausea medication. If nausea causes vomiting, with sometimes happens with Methotrexate, it can become a focus of our attention and many have developed a type of almost automatic reaction of sorts to methotrexate that goes something like this . . . “you give me that pill and I will get nauseated”. It is a type of conditioning. In my situation, I hadfailed many other medications and needed to find something to quiet my eyes. There was no choice but to tolerate many of the side effects that I was experiencing. Finally, in my first go round with MTX, the drug was stopped to see what its role was in my extra-ocular symptoms (dizziness, parasthesias, tinnitus, vertigo). What we learned was that the MTX was not at the root of the problems. Off MTX, my eyes flared, this time returning with scleritis and some other problems (CME). So, I asked about going back on MTX.
The second time around, off all prednisone, many of the side effects were quite tolerable. I met a child at the Kids’ Conference who vomited whenever she smelledMTX. I eventually developed something like that, although I did not vomit. But, there was some sort of odor. The point of this is that I noticed a difference once I made up my mind that I had to have the drug; “don’t sweat the small stuff” as Frances would put it. None of this will be of much help…what saved me in the end was switching to the injectible form. No GI problems, etc.
Do you actually vomit, or is it nausea that you are struggling with? Perhaps you will be one of the unlucky ones who cannot take MTX. There are other medications if that is the case. MTX is the gentlest of the immunomodulators. CellCept works great for many who do not get along well with MTX. Hang in there; you will find the right drug. But, I warn you, there will be days when you feel sick and when you will be scared. But, the medications do work, and it is so hopeful to see that result.
I won’t even begin to try to describe the cytoxan treatment . . .
Liz
The remarks that Liz has been making to you in an effort to help you are ALL accurate and appropriate, with one exception: leukovorin is an appropriate alternative to folic acid with respect to protectionagainst methotrexate liver toxicity. If it is given correctly, it does not detract from the therapeutic effectiveness of the methotrexate. On the matter of the nausea, I would make the following remarks:
We NEVER tolerate a patient being miserable. This is not cancer chemotherapy, where one must endure considerable misery in order to survive the cancer. Mild stuff….sure. But major life-altering side effects are never tolerated; we simply move along to another agent.
We occasionally encounter a “delicate” patient who tolerates nothing; everything nauseates him or her, or makes the patient feel “weird” or profoundly fatigued or something else. It has been impossible to explain this “delicacy” scientifically or objectively. Regrettably, such patients seem doomed to years of steroid use and slow but permanent loss of vision from damage to the eyes caused either by chronic low grade inflammation or by chronic steroid use. I pray that you are not one of these individuals.
With Sincerest Best Wishes in finding the way,
C. Stephen Foster, M.D.
Thank you for your explanation. I have found ways to deal with the fatigue, and as long as the nausea does not become a 3-day event I will tolerate it too. The period of intense nausea/vomiting only lasted for about 6 hours. Definitely tolerable, especially if I can figure out when it happens and takeanti-nausea medication.
I, too, hope I am not one of the unlucky few!!!
Thanks again,
Kristin
I understand that Dr. Foster’s philosophy is anti-steroids, but just what are the options when methotrexate doesn’t work for you?
I’m really curious because my bad eye has finally (knock on wood) calmed down after 6 years (but I already have a cataract there) … and now my right eye is getting in on to the act. I just had a flare die down, but had to get a kenalog injection for a CME …. UGH!!!
I could live with one bad eye if I had to …. but I can’t stand the thought of BOTH of them crapping out. I was on mtx for 6 months, but then had to stop because my liver didn’t respond well.
So … what else is there? And who’s the best doc to see for this in the Hartford, CT area?
Thanks, Carol
No, sorry, but you don’t quite have it right. Dr. Foster is NOT anti-steroid. In fact, I teach a stepladder algorithmic approach in aggressiveness to therapy, with steroids always the first step on the stepladder. Once one reaches the immunomodulatory step, there are many, many options. Methotrexate is often the first recommended, simply because of its length and safety track record. But not everyone responds, not does everyone tolerate methotrexate. One tries and moves along as needed, until one finds the medication or the combination recipe of medications that accomplishes the goal: total freedom from all recurrences of uveitis, and freedom from significant side effects from medication.
I know of no one in your area who has done a fellowship in uveitis and who, therefore, is trained specifically in the sub specialty.
Sincerely Yours,
C. Stephen Foster, M.D.
Well put. Next subject. Walker #1 has spoken! How is everybody doing? I’m on circuit overload, trying to get out from under.
Here’s the script. I take on a project. I do it well. I can’t leave well enough alone; I do it better than well (or than it ever needs to be done); eventually folks get annoyed with me, or, they join in the spirit of it all, as in “the walk”.
Now, Walker #1 would say that I am overdoing (agree), and getting myself all stressed out (not sure about that); and, he could for sure be quoted as saying that stress is at least ASSOCIATED with RECURRENCE of uveitis flare (or, more specifically, what he actually said was recurrence of scleritis flares). But, we are splitting hairs here as I seem to have both; taking on more than I “should” under the circumstances (chemotherapy, chronic flaring etc. etc. etc.), “glaucoma”, CME, Scleritis, funky hearing etc. etc. etc. (don’t have all of those now; don’t panic. But, I agree, it is a very long list that doesn’t seem to be getting any shorter).
Do I stop? Of course not. So, not enough to do, Liz? How about taking on auditioning for an orchestra. So, now my elbow is sore and I can’t practice. ARE YOU STARTING TO SEE A PATTERN HERE? Well, OK. So, I am an “over doer”. I am a “hyper-reactor” in more than just my eyes it would seem. So, I go take one of those courses that Harvard teaches about, God, what was its name (something about Mind and Body . . .) they had a “branding” problem; had 4 or 5 names so I can never remember the ACTUAL name. Anyway, the group was interesting; no shortage of zealots there. And, I relearned some important things that it is easy to forget when you spend your life hyper-focusing from project to project.
This is way too long, I know. But . . . So, are you starting to see a pattern here? Well, I am. So, what can I do?
Now, have any of the rest of you noticed this pattern in yourselves or in me? I sure have. So, that’s the topic I propose for discussion. I don’t think I’m the only one in this group with this approach to life. Way too long.
Thanks for reading if you are the one who got to the end of this “rant” (love that phrase, Frances).
Liz
There is an astonishing degree of insight exhibited in this post, and an extraordinary openness in publicly “confessing” such insightful epiphany. Whether or not anything important and long lasting will come of it, of course, only time will tell; it is so difficult for one to change one’s “soul”. But if ever there were a way to do it, recognition and confrontation of the issues is step number 1. I am so touched by this candor in an effort to reach out to help others attempt similar introspection. Incredibly complex matters. Complex way beyond my ken.
Thank you, Liz.
C. Stephen Foster, M.D.
I have Lupus with severe Sjogren’s occular involvement. Thanks for the welcome Mike, I’ve been a little slow at getting to my e-mail. I’ve had such severe photophobia the past few weeks that I’ve only be able to spend a short time at the computer each day, can’t watch t.v. (small loss), nor open the blinds. Unlike most people in the group I don’t think I have uveitis, I have Lupus with severe Sjogren’s ocular involvement. My eyesight went from 20/20 uncorrected about two years ago to 20/200 left eye corrected and 20/140 right. Friday I couldn’t take any more pain and made an emergency appointment, more ulceration and scarring, I’m going to be having a bilateral partial tarsorrhaphy this week, and I’m really frightened, but I have all tear ducts pluged, use drops every 15 mins. and wear moisture chamber goggles at night and during sometimes during the day. I was hoping the doctor would think a graft or cornea transplant would help, but he said I would reject both, and it could make my lupus flair to a life threatening level.
I hate to start posting to a new group on such a negative note, but that’s how it goes. Has anyone in this group been through this surgery, I can’t seem to find anything about it. I’m 46, live outside of Philly, and currently going through visual rehab training, my career testing said I should go into teaching, but can you think of what a bunch of kids would think of a teacher who’s almost blind, like they went to heaven. So as soon as I recuperate it’s back to the career drawing board.
Mary
I do not know enough about you to reply appropriately here, and probably couldn’t without personally seeing you any way. But in general I can make the following remarks that you may or may not find helpful. Sjogren’s syndrome, associated or not with a diagnosable “connective tissue disorder”, such as rheumatoid arthritis, runs the severity scale from mild to catastrophic. With mild Sjogren’s one has dry eye and dry mouth that are bothersome but not vision threatening; these are typically treated with warm compresses of the eye lids, with gentle massage, and with artificial tears and room humidification and intake of lots of liquids. More severe “sicca syndrome” is treated with artificial saliva for the mouth, secretory stimulation with Sialagen, and occlusion of the lacrimal puncti to conserve fluid, i.e. to slow down its loss from the surface of the eye.
Wearing swimming goggles or performing a tarsorrhaphy are reserved for more severe cases in which the cornea is being severely damaged, all in an effort to reduce the surface area of the eye exposed to the atmosphere, thereby reducing evaporation from the surface, and thereby keeping the surface wetter. There is an inflammatory component to the disease. We sometimes find that certain “immunological markers” in the blood, i.e. indicators of a person’s immune system activity, are elevated in patients with active Sjogren’s syndrome, and in those instances I treat the patient systemically with medication designed to calm down the inappropriately hyperactive immune system. In some instances all that has been requires has been a short course of systemic steroid (prednisone), with subsequent tapering and discontinuation of the medication; I have had to re-treat in that way in some instances. But these have been SHORT courses of steroid, i.e. less than a month. The findings that inflammation is involved in this disease has led Allergan Pharmaceuticals to develop cyclosporin (usually used systemically to treat transplant patients or patients with autoimmune inflammation) for topical application to the eyes of patients with Sjogren’s syndrome; the drug is still in development, i.e. not yet available to the public. We make it ourselves at the Massachusetts Eye and Ear Infirmary and have for many years, finding it to be useful in certain patients; it stings and burns considerably, and so not everyone can tolerate its use.
Regarding corneal transplantation, your doctor has told you correctly. Unless your underlying problem can be sufficiently corrected, any new cornea put into your eye would be rapidly damaged by the same process which has damaged your own (apparently) cornea. However, if the problem were to be brought under control, then corneal transplantation would not be out of the question. Finally, you may want to consult with Professor Claes Dohlman at the Massachusetts Eye and Ear Infirmary. He is the developer of and artificial cornea, the Dohlman Keratoprosthesis, which can restore vision to substantial numbers of people who are not good candidates for corneal transplantation.
Perhaps this is more than you wanted in way of a response, but in the absence of personally evaluating you I had no way to know just which of all the above categories you might fall into, and so wanted to provide information to you as best I could.
With Sincerest Best Wishes,
C. Stephen Foster, M.D.
Dear Kristin:
Remember that Dr. Foster is the physician who put Demi on both the NSAID and the MTX. I spoke at length w/the ped. rheum. at Childrens of Phila. and my own triple boarded rheum. about this . This is NOT my opinion. According to the PDR many antibiotics (amoxicillin) can cause the same problems as NSAIDS taken w/ MTX however again the physicians I have talked to say that clinically the problems do not arise unless there is impaired renal excretion.
Glen
I’ve been catching up on posts, since being in absenteism for a couple of weeks. I can’t say that I completely agree. Since hearing more and more about MTX and all the various protocols that some on this site have undergone, I’ve spent a lot of time in the library/bookstore to look up as much as possible about MTX.
I thoroughly read all the sitations. HERE’S what I’ve read: It is NOT recommended to take NSAID’s, aspirin etc. because these compounds displace mtx from its binding site on Albumin. This increases the mtx blood concentration, > toxicity occurs at 10 ^-8 molar. The problem enlies in that MTX, on it’s own tends to accumulate in fluid compartments (pleural/ peritoneal) in the body out of which it diffuses slowly. If there’s more MTX in the blood, there’s more probability that it will become “lodged” into an extracelllular compartment, and by diffusing out slowly, prolong it’s own action and cause unnecessary harm.
That said…. it makes sense why physicians when faced with patients that have an incredible inflammatory process coupled with severe pain (joint, ciliary etc), would chose to put a patient on both MTX and an NSAID. Now, obviously, I’m not a physician, nor do I have first hand experience with a case like that. However, in my mind, Kristin has a valid point which is backed up in the literature.
Hope you’re doing well! I’m still working on catching up on posts… 1000 more to go!
Anya
May I suggest that we leave the driving of the bus to the physician in charge of the individual patient? This is an example in which experience trumps rigid guidelines. It is true that methotrexate and nonsteroidal anti-inflammatory medications interact in important ways. However, experienced rheumatologists have used the two together for 40 years, learning how to do it safely, i.e. taking into consideration the drug interaction and prescribing (dosing) accordingly, learning that, sometimes for the good of the patient, combining the medications into their therapeutic “recipe” provided more therapeutic benefit at less risk to the patient than did pushing the dose, for example, of methotrexate.
This is a wonderful forum that accomplishes much good, in my opinion. But there are some matters in which one may get a little off track in the understandable effort to know more and to spread knowledge. The details of patient care and medical prescribing and monitoring is probably one of those “tricky” areas, and if you wish to pass such matters by me first before getting too far down the discussion path, I would be pleased to answer to the best of my ability.
Sincerely Yours,
C. Stephen Foster, M.D.
Liz posted a message asking about my mtx use. I have been at 12.5 mg per week for approximately four years. I’m also taking 10 mg of deltasone (orally) every other day. We have not been able to completely reduce the steroids – which I’ve been on for six years, but have gone from 180 mg per day to 10 every other. Great news for my eyes and the rest of my body! (Even greater news for my husband due to the nasty mood swings!)
Does anyone else on mtx have liver biopsies? I haven’t been able to read all of the posts – or keep up with the new ones – but I don’t believe I’ve read anything about that. My opth doctor (Dr. Sanjay Shah) and my rheumy doctor (Dr. Steven Eyanson) can’t find any data to support either having or not having them. So, as a precaution, I have a liver biopsy every other year. Wow – what a great site. I really wish I’d found it sooner. I have trouble keeping up!!
Shelley
Your dose of methotrexate is very low; some of our patients are on 25mg per week. An occasional one is on 30 or 40 or 50mg per week. We, and every rheumatologist I know gave up “routine” liver biopsies in methotrexate patients years ago. You may want to visit the Immunosupression workshop at https://ww.uveitis.org, and visit the web site of the American College of Rheumatology to look further into this matter.
But to make a long story short, I have been here at Harvard for 26 years, have used methotrexate for longer than that, and have not had any patient biopsied nor later regretted it in all that time. We simply follow, closely, the liver enzymes, and back off on the dose if the enzymes rise significantly, and stop the drug if the enzymes do not fall when we decrease the dose.
Other medication, such as cyclosporin, can work synergistically with methotrexate in patients who are not inflammation free off all steroid if they are “maxed out” on the methotrexate dosing. But for the individual who is not “maxed out”, we simply continue to push the dose until we have accomplished the goal: no inflammation on no steroid, or until we reach a dose that is not perfectly tolerated (side effects, rising enzymes, etc). Hope this helps.
Sincerely Yours,
C. Stephen Foster, M.D.
Hi all.
I was just watching the local news when I saw my eye doc. Apparently, they have discovered a new breakthrough treatment for the wet form of macular edema. It is called visudime (sp?). It is injected into the blood stream and then triggered by laser (I think that is how he explained it). Apparently it won’t cure it but it will stop the progression of the disease. In case anyone’s interested…
Brenda 🙂
The treatment is not new, having been in use for at least a year, approved by the FDA to treat abnormal blood vessels in patients with age related macular degeneration. It can also be used for other neovascularization problems, including diabetes. Diabetics get macular edema, and perhaps it is in this context that you have seen a report. This is not a technique to treat inflammation.
C. Stephen Foster, M.D. (8/9/2001)
Hello Trish and other Iritis sufferers:
My 7 year old daughter is on cyclosporine, methotrexate and pred forte drops(2xday). She has Iritis in both eyes but is also being treated as if she has JRA. The cyclosporine was giving her nausea and diarrhea. After reading your message I also noticed she has alot of hair on her legs. I want to insist she is taken off the cyclosporine!! We see the rhematologist today. Our opthalmologist says the amount of drops she is on isn’t dangerous — but the rheumatologist disagrees! She’s had iritis for approx. 3 years! She’s been seen by Dr. Foster also. Hoping and praying she won’t need these drugs much longer.
Cheryl
Our philosophy can be summarized succinctly by its 3 essential elements:
1.Complete freedom from all inflammation at all times.
2.A limit to the total, cumulative amount of steroid used.
3.Freedom from any “important” drug-induced side effects.
Here’s why:
If your child has an important drug-induced side effect, then the drug should be reduced or stopped; there are plenty of immunomodulatory medications that one can choose from to accomplish the goals listed above. But one must also be thoughtful regarding whether or not the side effect is “important”. Is one’s nausea for a day after taking methotrexate “important”, or is it trivial, and worth it if the uveitis is conquered? Is the leg hair growth “important”, i.e. does it bother the patient (or just the mother), is it objectionably noticeable or trivial in the bigger scheme of things, i.e. saving excellent vision for the next 70 years of the young patient’s life?
Hoping this helps. If you and your doctors need additional input from me regarding alternative medication, please let me know.
Sincerely Yours,
C. Stephen Foster, M.D. (8/24/2001)
Dear Liz,
My rheumatologist is nervous about the dosage I am taking. As per Dr. Foster’s recommendation, I am taking 25mg of mtx per week. Yes, it is definitely helping. Eyesight hasn’t been this good since college (prior to formation of cataracts). As Dr. B is a rheumatologist, he does not usually deal with doses this high, and he is looking to see if there are any other medications to take concurrently with mtx to increase the effectiveness of my regimen so that I can get off of the oral prednsione without flaring up
again.
He doesn’t want me to have to keep starting over with my 2 year countdown once my eyes are quiet…. as of now (saw Dr. Y yesterday). He knows how upset i am about putting my life on hold and just wants the best for me. That is why I posted. He is looking for answers that are not yet out there as far as uveitis is concerned. But hey, at least I know he is up on the latest research as far as RA is concerned. And he is trying to see if these latest medications will work for uveitis as well. It is so nice to see a doctor so concerned for me that he will tell me about these new medications and ask me if I can find some research about it’s effectiveness for uveitis, since he did not know of any studies that used uveitis patients.
He did do some research and told me about what Kineret does regarding the immune system, but was not able to come up with something that included uveitis patients. That is why I asked. If my “recipe” can include another medication to help me along the way, I will take it. I just want this over with. I have had it. Emotional burn-out here, especially after the week I had (which may be another post, I am not sure yet…been very stressful and very disappointing for me, to say the least). [SNIP]
Thank you,
Jess
Dear Jessica (and everyone else on the planet too, for that matter):
If one is, after years of destructive inflammation in the eye and permanent loss of vision to one degree or another, able to find some peace and quiet on some safe and effective “recipe” or other, it may be wise for that individual to then ride the wave of peace and quiet for a sustained period, enjoying the victory, enjoying life for once, and getting then to a place where experience has shown that, more likely than not, the bad old, inappropriate immune system has relearned how to behave properly, not attacking the eye, and so then enabling the patient to slowly come off the medications without the uveitis flaring up.
We see this type of success story here, time and time again over the past 26 years, and so try to pass on this experience to others regarding the discoveries that have been made here, so slowly, over this past quarter of a century. And while there can be no doubt that other, better therapies lie ahead, the fact remains that it will take years before we know whether or not “there is a better way”, or “this and that work better than that and this”. It will simply take time.
For those who have already lost considerable vision from uveitis but who now are controlled, on a safe and effective regimen, is it really prudent to rock the boat? Is it really prudent, with the risk of flaring up, to dabble with each new anti-inflammatory agent that comes along, before we have the data, before we have had the chance to test and research the question of effectiveness for uveitis? I think not; the stakes are simply too high: loss of vision, permanently.
Of course we all want new, better therapy. Otherwise I would not be doing the things that I do every day at MEEI. And newer, better therapies will be available; that is the natural order of the progression of science. But my very strong advice for those of you who have found a significant measure of success, i.e. freedom from active inflammation on a medication plan that is well tolerated and that involves limited steroid use, is to relax, enjoy the victory, and enjoy (for a change) life.
With my sincerest best wishes for the New Year,
C. Stephen Foster, M.D. (12/31/2001)
Dear Dr. Foster,
Can you tell me anything about “cellophane” on the eye? Apparently my son has this. He also has a little bit of macular edema and mild inflammation in the left eye. He was given his third steroid injection yesterday. His vision is 20/30 in both eyes with +1 cells in left eye.
He was on cosopt for the last month due to pressure of 40 in the right eye. The pressure is back to normal. I think I read somewhere that the drops sometimes cause edema and it will go away when the drops are stopped. But even if this were true, he didn’t use the drops in that eye.
Can anything get rid of the cellephane?? And with all the weird problems my son has had, would you feel that this is something more than just pp? Have you seen cases of pp like this? Do they ever get better? I asked the doctor about taking Nsaids and she said they don’t work, period. What about cryoplexy – would that be an option?
Thanks for your concern,
Sandy
Cellophane maculopathy may occur as a consequence of chronic inflammation. Once formed it tends to be permanent. It worsens with continuing or recurrent inflammation. Steroid therapy may help by treating active inflammation, but, of course, sooner of later with chronic or repeated steroid treatment one pays a price with cataract or glaucoma or both. This is why we have preached a philosophy of elimination of inflammation and a limit to steroid use over the past 25 years, BEFORE permanent damage is done to delicate structures critical for good vision. You may want to consider, if you have not already done so, spending considerable time at https://uveitis.org to learn more about your son’s problem and treatment options for it.
Sincerely,
C. Stephen Foster, M.D.
Dear Friends,
Have not been lurking lately, or keeping up, but want to wish everyone a wonderful holiday, and Happy New Year. We have got our Christmas present, as you know or may not Julie has been on 15mg MTX 10 wks, tolerating very well. Her seeing eye is quiet, and the back of the eye is quieting down considerably +1 and cells spread out, not all clumped. She was seeing 20/25, She can see 20/15 minus 2 now.
I just want to say Thanks so much for helping us make a educated decision. Dr. Foster and Liz, you are Fantastic. One other note, Julie had her 1st Angio flourscene (? spelling). She did have mild CME, 5WKS after starting mtx. Only further proof to the opposing professional that the MTX was so necessary.
Peace & Happiness,
Anne & Julie
Thank you for the follow up. And thank you for the kind thoughts. We have lived this same story 1000 times during my 26 years here. Whether or not behaviors will be any different 26 years from now I do not know. But I am convinced that if behaviors of ophthalmologists are significantly different on this matter 26 years from now, it will be because of this and other forums like it, and because of patient activism and advocacy by parents like you. Bravo, and best wishes for this and future Christmas Seasons.
With my most sincere wishes for a wonderful life for Julie.
C. Stephen Foster, M.D.
Also, has anyone heard of the use of bee venom for ocular inflammation?
Linda
Perhaps you can share with us the published evidence that bee venom is effective for anything. This is another of the regrettable areas of homeopathy and herbalism, in which controlled clinical trials are not done and in some cases are even resisted for fear of an outcome that indicates that the clinical claim has no basis, as was the case for one recent, well-designed trial comparing placebo with herb with claimed therapeutic effect.
I suggest one keep a skeptical mind on such claims, and demand evidence of efficacy, evidence from non-biased, sources with no financial interest in the outcome of the randomized, placebo-controlled, double-masked clinical trial.
Sincerely,
C. Stephen Foster, M.D.
Cyclosporin drops may or may not be helpful for one or another eye disorder; they are being developed by Allergan Pharmaceuticals for the treatment of dry eye. They are probably useful for certain forms of ocular allergy, and perhaps for a disorder known as ligneous conjunctivitis. We have been particularly disappointed in them in the care of patients with uveitis, corneal infiltrates, and corneal transplants.
Sincerely,
C. Stephen Foster, M. D.
Sure. As a matter of fact, most patients with rheumatoid arthritis do not have HLA-B 27 positivity. HLA-B27 is a gene that seems to predispose to the development, at some point in life, of any one or combination of the following:
Ankylosing spondylitis
Inflammatory bowel disease
Uveitis.
Sincerely,
C. Stephen Foster, M.D.
Dear Kristin,
Thanks for posting! I did read this earlier, as I get the e-mails right from the site. Very interesting. I’d like to hear Dr. Foster’s view on this drug, as it isn’t one that I have heard him mention. Hopefully, he will know something about it!
My best,
Gae
__________
Remicade has been around for quite a while. It’s primary use has been for the treatment of inflammatory bowel disease. Like Enbrel, its target is TNG-alpha. Enbrel has turned out to be pretty disappointing for the treatment of uveitis in general. Remicade must be given intravenously, and so is not “user friendly”, i.e. has to be administered generally in the clinic or office: hence the lack of a rush to use it unless there is good reason to suspect that it will be worth the hassle. The senior author of the paper from Greece is a former trainee of mine. He suspected that Behcet’s Disease (actually, in Greece it is called Adamantiades-Behcet’s Disease, out of respect for the Greek ophthalmologist who described the disorder 6 years before Turkish dermatologist did) may involve TNF-alpha, and so treated some ABD patients with Remicade, with good effect. But the caveat is the following:
And so, what is needed now is such a trial. The problem is that ABD is a rare disorder except in Turkey and the Far East, and so getting such studies done is not easy. It’s the same story every time a purportedly effective new treatment for a rare disease surfaces. We’ll see how it goes, by the by.
By the way, there are MANY drugs I have purposely not mentioned because of wanting to avoid hype and hope at too early a time: rapamycin, interferon, cytosine arabinoside, IL-1 receptor antagonist, Zenapax, IL-10, just to mention a few. You will typically hear me speak of medication whenever I believe the evidence is good that the risk/benefit ration is favorable for it being appropriate for patients with ocular inflammation. Sometimes I will be wrong, since we will be involved in studying the medication and will discover that it is no better than placebo or that its risk profile is, in my judgment, unacceptable. But in general I will speak of a medication only when sufficient good quality evidence exists to support its use for our patients.
With Best Wishes,
C. Stephen Foster, M. D.
Season’s Greetings, Doctor.
I am wondering about a recent development in my treatment. My rheumatologist recently increased my MTX, and he now wants to give me a Remicade infusion. My iritis is worse as it has ever been (I’m a 32 year old female who has had iritis for about a year and a half now). He seemed very hopeful about Remicade. What is your opinion?
Thank you,
Caroline
Please inform your rheumatologist that we find Remicade to be wonderful for those problems (mostly scleritis) associated with abnormal levels of TNF- alpha, and useless for those problems in which TNF-alpha levels are normal or non-detectable. The vast majority of uveitis cases appear not to involve TNF-alpha. Our double-masked studies to be published in 2002 indicate that Enbrel, another TNF-alpha inhibitor, was no better than placebo in the care of a select group of patients with uveitis requiring methotrexate to gain control of the uveitis; and we have been unable to detect TNF-alpha in aqueous humor or in vitreous of patients with uveitis whom we subjected to surgery to harvest the intraocular fluids.
It sounds to me as if you need to move along to another or to an additional immunomodulator in order to gain control over the uveitis, and our experience would lead me to bet that Remicade will not be your ocular savior.
Sincerely,
C. Stephen Foster, M.D. (12/26/2001)
Hi,
My daughter has JRA sine she was 2 years old. She developed bilateral severe anterior Uveitis, right cataract and glaucoma in the left eye. She had undergone right and left cataract surgery and had malteno valve implanted in her left eye to control her intraocular pressure. Vision in right eye following surgey was poor due to macular changes. She is on Pred Forte and Atropine eye drops and 50 mg cyclosporin on daily basis. Also, weekly 7.5mg Methotrexate injections.
Last week, she was diagnosed with choroiditis in the left eye with vision degradation. Doctors are saying that the worst is yet to come and we have reached a point of confusion and we do not know what to do.
We need your advice.
Kind regards.
This is a truly desperate situation. I suggest that you get on an airplane now for consultation with a uveitis specialist, wherever you can find one. Dr. Albert Vitale, at the King Khalid Eye Specialty Hospital in Rihyad, Saudia Arabia, is such a specialist. Would this be a convenient place for you to travel?
Sincerely
C. Stephen Foster, M.D.(9/14/2001)
I’ve combed the information on this site – and as I have an iritis flare at the moment decided to speak to a specialist – I normally go to the ER. (I’m 41 and I’ve had bilateral iritis 2/3 times a year since I was 21 – no obvious cause. My iritis isn’t bad, cells 2 sometimes 3, I’m not a steroid reactor, my sight is good, pressures still normally OK. It’s sometimes difficult to taper down so the attacks can drag on and I’m aware that even when I don’t have a flare I often have inflammation in my eyes although not enough to show much on a slit lamp.)
I asked the specialist whether there was anything more I could do to try and stop the attacks with the aim of protecting my sight long term. His reply is that cataract and possibly other complications are inevitable eventually and he’s unwilling to start oral steroids because of side effects. He also said my iritis is probably stress related. Given that over the last 20 years nothing about my iritis has changed, I find it difficult to accept that stress could have been the answer throughout this whole period. I feel I lead a privileged and happy life.
From what I’ve read on your site it seems as though non steroidal forms of treatment may not be appropriate for relatively mild iritis like mine – sorry if this is wrong. I’d be grateful to know if you think I should accept the specialist’s view of the inevitable and carry on as I am – or should I be trying to argue for a different form of treatment when I see him again? I’m really sorry to bother you again but like everyone I long to find an effective treatment for this and find speaking to specialists completely daunting.
Thank you for your help.
I cannot for the life of me understand why the material on this site has not made it VERY clear to you that you would be the PERFECT candidate for nonsteroidal approaches to care and prevention of recurrent attacks of uveitis. What part of this is unclear? Please help me out here, because the whole point of posting all this information is to provide patient and physician education and to change the tired old ways of treating uveitis. I suggest you move along. Enough is enough.
Sincerely Yours,
C. Stephen Foster, M.D. (9/14/2001)
Following your earlier kind reply 21 year old diagnosed with uveitis/irits. Perscribed topical drops and predizone 25 days. after 4 days off pills-still on the drops four times a day . eyesight worsened. Steroid injection given right eye. drops continued. Tablets restarted for 1` month. What causes this Disease? any answers or help out there.
Mom
With about 70 different things that can cause uveitis, it is impossible to provide help to you with so little information. Rheumatoid arthritis, by the way (you mentioned that the patient is rheumatoid factor positive) is not a “cause” of uveitis in that the prevalence of uveitis in the rheumatoid arthritis population is not significantly different from the prevalence in the general population. In general, patients with stubborn uveitis are, in my VERY strong opinion, best served by consulting with an individual who is, by virtue of specific subspecialty training and experience, truly expert in the diagnosis and treatment of patients with uveitis.
Sincerely,
Dear Dr. Foster,
I was diagnosed with Pars Planitis in Feb.. Needless to say it was stubborn to treatment. After 6 injections of Kenolog from April to August it is finally quiet. Yea! 5 injections were inserted in the back of the eye and the last one was in the front of the eye. Now I was just diagnosed with glaucoma. Last Fri. my pressure was 35 and immediately put on Timoptic and on Mon. it went down to 20. I am only 31 and am very nervous of having 2 vision robbing diseases. After reading all your literature I’m gathering that the area of insertion is the key to reduce risk of intraocular elevation. Are you saying that the injection in the front just below the eyeball is the safest? And the subTenon’s route is in the back is not so safe? And if the inflammation becomes active again would you recommend your uveitic glaucoma pt.’s to continue to have steriod injections in the front of the eye or the implant drainage? Thank you so much for your help! I’ve learned so much from this web site. And it’s also nice to know that your not the only one with such a strange disease.
Lisa
Anterior injections can cause glaucoma too; less likely than posterior ones, but still can do it; steroid drops, for that matter, can cause glaucoma. In your situation it seems to me that one should be thinking hard on other, non-steroid techniques to stop your inflammation.
Sincerely Yours,
C. Stephen Foster, M.D. (10/3/2001)
My rheumatologist recommending using Methotrexate while the Uveitis doctor is suggesting that Cyclosporine is the way to go (less risk for young child)?
Regards,
Laura
Which of your doctors has the most experience treating children with immunomodulatory agents? Your question is not so easy and straightforward to answer, but perhaps the following remarks can help you a little: Methotrexate has, by far, the longest and best track record for both safety and effectiveness in treating children with inflammatory disease, both arthritis and uveitis. But it is not uniformly effective, i.e. not every child is a success with this medication. Additionally, not all uveitis specialists have experience using methotrexate, dependent upon where he or she trained; some centers become focused on one drug and trainees at such a center get experience then with only that drug. Cyclosporin also has a significant track record of effectiveness and safety, when used correctly; early experience with it indicated that it was spectacular, until it was realized that kidney damage was occurring in every patient being treated with it at the high dose initally used; at lower doses used today its effectiveness is less spectacular. It does produce one or two unavoidable side effects, unlike methotrexate, which carries with it, as do all the medications, the POTENTIAL for side effects. Cyclosporin stimulates hair growth, and some females in particular find that facial and arm hair growth is objectionable.
The bottom line, I think, is that ONE person should be in charge, and that person should feel free to prescribe the medication that he or she believes is in your child’s best interests. So…whichever one of your doctors is going to take on the responsibility of prescribing and monitoring for safety should make the decision, in consultation, of course, with you, after a dispassionate discussion of risks and benefits.
Hope this helps,
C. Stephen Foster, M.D. (10/5/2001)
Dear Dr. Foster,
My son has gone through his lens replacement and vitrectomy. He is doing well. He still does not have much sight out of the eye. They are hoping to move him to glasses and do some patching in about three weeks. Post surgery his pressure was 35 and is now down to 6. But… the inflammation is back. They put him on pred forte drops every half hour while he is awake for the last two days. We go in tomorrow to get things checked out. How on earth do you taper from such a high dosage?!?! How do we know when we should be seeking alternative immunomodulatory therapy? Our son is not even 6 yet. I realize that these white blood cells that have returned in the last few days may disappear with the inflammation but we will always have the fear in us that they will not (like the last time, and as such the reason for the vitrectomy).
What a vicious circle.
Ellie
Sorry, but I have forgotten, if I ever knew, the details of your son’s case. From the little that is contained in this message, it sounds as if he has had uveitis, bad enough to require lots of steroid therapy and to result in development of cataract, and that now he has gone through cataract surgery (?with a lens implant?) and is having a pretty rough time of it, with inflammation and a period of high pressure. Is that about it? And you’re wondering if now would be a good time to begin to consider immunomodulation?
The fact that he is “only 6 years old” is irrelevant with respect to the wisdom and appropriateness of immunomodulatory therapy; our best (most successful) patients are 3, 4, 5, 6 years old. It sounds to me as if such therapy should have been considered long ago. By reading the material on this site you will have learned or will learn that the past is a powerful teacher if one will allow it to be.
History tells us again and again of the foolishness and failures of the following:
Where are you? Who are the doctors involved in your child’s care? What is his medical program now? What is his level of vision?
Perhaps with more information of this sort we can help you get onto a path that leads to the best possible outcome for your child.
Sincerely Yours,
C. Stephen Foster, M.D. (10/12/2001)
Dear Dr. Foster:
I have been having recurring uveitis since January of this year. My opthalmologist treated me with Pred Forte to start with but the uveitis worsened. I was then put on oral steroids and the uveitis improved to the point where I was taken off of the steroids. 10 days after tapering off of the steroids my uveitis came back very severely. I started back on the Pred Forte and also the oral steroids (60 mg) again. I also was given a steroid eye injection as well. The inflammation improved and I tapered off of the oral steroids as well as the Pred Forte. I was clear from any inflammation for about 3 months. The uveitis came back again. My ophthalmologist has put me on just the Pred Forte for now (along with the dilated drops). My current uveitis flare up does not seem as severe as the previous one. My question is this. I have read your treatment options for HLA-B27 (This is what I have) and I wanted to know if you recommend any other type of treatment (i.e. oral non-steroidal anti-inflammatory drug or immunomodulatory therapy)?
Thanks,
Paula
Yes, of course. You have read my philosophy. If a person has multiple recurrences, as you clearly have, we move along to other strategies, rather than simply continue to play the same string on the guitar. Our next step typically is with daily use of an oral non-steroidal antiinflammatory agent in an effort to prevent yet another recurrence.
Best Wishes,
C. Stephen Foster, M.D. (01/17/2001)
Two questions. First, would an ALT level of 91 after starting MTX with 48 be reasonable cause to drop MTX? Second would continuing oral steriods after dropping MTX without any non-steriodal immunomodulators be a good idea?
Who is your chemotherapist? What has he or she advised you on this matter? I would certainly reduce the methotrexate dose in any patient of mine who showed a doubling of his ALT level on methotrexate; whether or not I stopped the drug altogether would depend upon the ALT behavior in response to the reduction in dose.
Other information on this site should indicate to you our negativity about chronic use of steroid, especially oral steroid.
C. Stephen Foster, M.D. (10/17/2001)
Dear Doctor Foster,
First, thank you for this excellent site. I’m a 54 yr old male with AS, otherwise good health, on 125mg/day indocin for 10 yrs with blood work OK. I had iritis flares every 1 to 3 yrs from ’89 to ’99 when it became chronic. It responded to Pred Forte. but came back every few months. 18 months ago, I began 2 drops/day (topical) 1% cyclosporin which seemed to work for a while. But now it’s back every few months. I’m willing to incur significant health risk if necessary to reduce risk or vision loss. Would you lean toward higher indocin dosage, another NSAID, going to methotrexate or something else?
I cannot comment specifically about you, since I do not practice over the internet. But in general, we advocate moving along on up the “stepladder” if one seems to get stuck being dependent on steroid or needing steroid again and again and again. Methotrexate is typically my next choice if chronic use of an oral nonsteroidal antiinflammatory agent is not stopping recurrences of uveitis. No harm in trying one or two more NSAID’s before moving on, if you wish and if you do not already have some vision loss because of the recurrences of uveitis. Voltaren, 75mg twice daily or Celebrex, 200mg twice daily are the regimens I commonly prescribe.
Hoping this helps,
Sincerely Yours,
C. Stephen Foster, M.D. (10/26/2001)
Dear Dr. Foster:
As you may or may not know, I saw an opthamologist in Edmonton for a second opinion. A Dr. D. Climenhaga. I got the impression from him that was quite against the use of immunodulators and that they have the side effects of deformed children (even after being off the drug) and possibly death (says he saw a case where someone died). This facts were scary to me. Can you clarify more?
Also, he told me that I had no more inflammation in my right eye, but I’m still seeing flashes and floaters (had vitrectomy in right eye in June) as well as pain. The left eye, also in pain, the vision had gone from 20/25 to 20/30 and he said that I had cells “off and on”. Is this considered active inflammation and would you consider it a good reason to come to you for a consultation.
Brenda
Please visit the American Journal of Ophthalmology site (there is a link to that site on the title page of my site) to educate yourself about the use of immunomodulatory therapy. Regrettably many doctors, including ophthalmologists, are totally ignorant of the facts regarding this type of therapy, and in their ignorance spread incredibly incorrect and frightening information to patients who then chose not to proceed with such therapy and who then, over a period of 10-20 years slowly needlessly lose vision.
Sincerely,
C. Stephen Foster, M.D. (10/20/2001)
Dear Dr. Foster,
I’m a 54 year old woman, HLA-B27 positive, with recurring uveitis. My uveitis became very severe and stubborn and frequent three years ago when I required oral prednisone at 160 mg per day (in addition to PredForte and dilating drops) to turn the inflammation around. I also have ankylosing spondylitis and Crohn’s disease for which I have been on daily non-steoidal anti-inflammatory drugs for 17 or more years. For more than a year I have been on Methotrexate as well, hoping to quell my uveitis attacks. In July, exactly one year after beginning Methotrexate, I had another very serious uveitis attack. This time, despite prednisone/ dilating drops, oral prednisone and injections of steroids in the eye area, I have ended up with marked loss of vision in the affected eye (it seems to mainly involve my right eye). Also, through the years of uveitis flares and prednisone drops I have developed mild cataracts as well. Do you have any hope for me? Anything I could consider for the future? What about Remicade as an immunosuppressant?
Donna
Regrettably I cannot treat you over the internet, and so have no advice for you. Your situation is clearly complex and severe. I would need to personally evaluate you and see your past records, understand what doses of methotrexate you have been on, look at the blood work results, examine the eyes, etc. Remicade affects only one chemical, tumor necrosis factor alpha. Our results with it have been very disappointing for care of patients with uveitis. My guess is that your situation is complex enough that you will require two or more medications (perhaps including Remicade) to create the perfect “recipe” that will stop the attacks.
With Best Wishes,
C. Stephen Foster, M.D. (11/1/2001)
I found ask the Dr. Is leucovorin calcium day after MTX as affective as 1 mg folic acid QD. Or is it too effective and doesnÿt let the MTX do it’s Job.
Thanks,
Anne
Both folate supplementation regimens reduce the incidence of elevated liver enzymes in patients taking methotrexate, and both are acceptable:
Sincerely Yours,
C. Stephen Foster, M.D.
No, not at all, in my opinion. It may provoke a flare-up; but the benefits of flu vaccination, in my very strong opinion, far outweigh the downside, and I would proceed to get vaccinate, if I were you.
C . Stephen Foster, M.D. (11/1/2001)
Are they related in any way. Could one have both? I am trying to figure out why I have such incredible tenderness in my temples and headaches.
Anne
Yes, but extremely rare. Additionally, temporal arteritis is generally seen in people over the age of 50, and almost always is associated with an elevated C-reactive protein and sedimentation rate. If you are concerned that you could have temporal arteritis, I urge you to raise this concern with your doctor immediately, today, and get the aforementioned laboratory tests performed. Temporal arteritis is an ophthalmic and medical emergency, with the potential for catastrophic, abrupt loss of vision without warning.
Sincerely,
C. Stephen Foster, m.d. (11/3/2001)
Hello Dr. Foster,
I have recently been switched from oral to injectible MTX. While using orally (10 mg), I was taking 2.5 mg of Leucovorin Calcium 24 hours after MTX dose. My doctor says I will not need to take this anymore, but I can if I wish.
Do you agree that stopping it is a good idea? Is it necessary?
Thanks!
Kristin
I am always loath to interfere with another doctor’s patient and instructions he or she has given to the patient. So….instead of answering you directly, may I please give to you a reference on the matter of folic acid and folinic acid use in patients taking methotrexate? You can obtain this through your local medical library or can at least read the abstract of the article through the online services of the National Library of Medicine (https://www.nlm.gov).
The reference is as follows:
van Ede, A.E., et al. Arthritis and Rheumatism, July, 2001, Vol 44, pp 1515-1524
Hope this helps in some way or other.
Sincerely Yours,
C. Stephen Foster, M.D. (11/15/2001)
Is there a difference between these two diagnoses? Is recurrent somehow different from chronic?
Thanks for the info,
Kristin
Yes, Kristin. Chronic means that the inflammation is there all the time, every day, day in and day out, to one degree or other. Recurrent means that the inflammation may be gone for a while and then recur.
C. Stephen Foster, M.D. (11/19/2001)
Hello Dr. Foster,
This is a bit of a follow up from Kristens’s question. When I turn to the treatment algorithms posted at this site, I see that there is one for recurrent non-granulatomas (sp?) uveitis, and for JRA associated uveitis – I am still not sure what pattern my son’s case would follow therefore what algorithm should be followed?
He is 13 and has been on pred-forte since June for his left eye for a 4+ inflammation, which has led to posterior synchiae. A week ago we found the inflammation was between 1/2+ and 1+ on and we now have 2+ inflammation in the right eye, and started the pred-forte in that eye. He has had the workups for JRA. SA, etc and his pediatrian and the pediatirc rheumatologist cannot find anything. Although he will be retested again in December to see if he develops any responses to these tests.
I know that this disease is rather hard to define in succinct terms, and that the treatment must be personalized in each case. My concern is that after 6 months, I see this as a chronic condition, and I am somewhat confused as what the next course of treamtent would likely be? The Non-granulatamas plan moves to short course sytemic steroids, followed by NSAIDs and then immunomodulators. However, the JRA also talks about ‘recur’ of inflammation, and I don’t think that we have reached a quiet state yet, so I think that we are not ‘recurring’ but are ‘chronic’.
After all of this long message, my underlying concern is that I cannot seem to interpret what the treatment algorithm is for chronic uveitis? Your insights are much appreciated.
Your clarification is much appreciated,
Lori
It doesn’t matter. The essential point is that your son is not at peace, with NO INFLAMMATION ON NO STEROID. Therefore, it’s time to move along. Do something. Anything. Just do something and do not continue with endless steroid drops for another 6 months. Whether the next step is a short course of systemic steroid or an oral nonsteroidal anti-inflammatory agent is patient dependent, and I cannot comment on your son’s particular case without personally evaluating him; I am loathe to practice medicine over the internet. But my view is that one wants to stay in the hunt and prevail by continuing to try one thing after another until the inflammation is in remission off all steroid.
Sincerely,
C. Stephen Foster, M.D. (11/21/2001)
Thank you Dr. Foster for such a prompt reply. I needed the clarification that regardless of the location of inflammation, the treatment goals are the same. In September he was ready to try the systemic steroids but as the inflammation was decreasing, we were to taper the left eye off the drops.
I have set my goal as not leaving the office until we are on another course of action. No inflammation, no steroids will be my mantra.
Sincerely,
Lori
Dear Dr. Foster,
Thank you for all your kind advise. It has been most helpful in considering the direction of my son’s treatment. My search of Cyclosporine in regards to the risk of malignancy seems to turn up a weak risk factor at most. It is also helpful to know that we can still increase the dose of Imuran.
I really find your site and your dedication quite incredable. I have bookmarked your links and medical associations and have dragged them to the top of my most frequently visited sites. There doesn’t seem to be enough time in a day to read it all! In my searches I do come across one question that plagues me. Although granulomatous uveitis appears to be less common than non-granulomatous uveitis; does it really make a difference in terms of drug of choice? Has anyone ever looked at that? Or is inflamation treated as inflamation independantly of its nature in regards to granulomas?
Again, thanks for being my sounding board. I am glad to see that you got away for a weekend. Hopefully you did not discuss the newest treatments for uveitis over dinner.
Kathleen
Dear Kathleen:
It does matter, both from a treatment point and from the point of liklihood of systemic disease association and type of systemic disease to investigate.
Best Wishes,
Stephen Foster, M.D.
I read an article of a study done by Susan Lightman MD at Moorfield Eye in England that I found doing a Medline search a while ago. They plotted uveitis flares and stress in one’s life and found no correlation that was statistically significant. However there is research to show that stress does effect the immune system so ……… It would be interesting to plot one’s flares w/ events in one’s life and see the results.
Glenn
===
Hi Glenn,
I have reviewed the ophthalmology literature on stress and uveitis. There are seven articles; the Lightman article is a good example of the challenges of the task. From the point of view of stress research, the study is very poorly designed; the results are destined to be what she got. Like the rest of the ophthalmology literature in this area, in the end they tell us nothing of importance. The challenges of designing such a study (is stress implicated in recurrence of uveitis flaring?) are daunting and I really, really
appreciate all that have tried to do so. REALLY.
Here are some of the problems to solve:
1. What kind of stress should be measured (there are many, many ways to define stress)?
2. With what should it be measured?
3. How should the sample be stratified with regard to OID, psychological variables of importance, stress history, coping style, etc. etc. etc.
I have reviewed the stress and coping literature and have some ideas about all of this, but the practical problems of designing and implementing a feasible study, and one with potential for meaningful outcomes, remain daunting. Such studies need, for all of the obvious reasons, to be conducted in ophthalmology centers that see a substantial number of uveitis patients, so we have come full circle.
Such an interesting area. So interesting. All physicians “know” that stress is a factor in relapse (not initiation) of some illnesses. Try to find a study that “proves” that point, in any
medical field. I would love to see the references.
Turn on those search engines, gang.
Liz
Dear Glenn:
The Lightman article, in my opinion, is extremely flawed. Stress research is incredibly difficult, especially if one tries to “measure” stress longitudinally, i.e. on multiple occassions over, say, a 2 year period. This is a frustrating but favorite area of interest for me, and I have tried to interest several people over the years in attempting to do the research required to answer the question, since many, many patients and doctors are convinced that stress can provoke a flare-up of uveitis in a patient who has had uveitis. No luck. Dr. Irvin did a very extensive literature search, and had conversations with colleagues in her field (psychology) who are expert in the matter. I have tried to find laboratory resources for measurement of “proxy” markers of stress (blood tests), without success.
You’re right about stress affecting the immune system, and it’s very complex. Stress can down-regulate some aspects of immunity, increasing the susceptibility to infection, for example. But it also appears to enhance some aspects of immunity, particularly where autoimmune problems are concerned.
If you want to get involved, welcome aboard the train (so far) to nowhere.
Sincerely Yours,
Stephen Foster, M.D.
Does anyone know what the difference is between these drugs??? I am confused. My PCP did not want to continue issuing the 50 mg Vioxx to me. He said it was an unsafe level to be on .. . on a daily basis . . . and could affect the kidneys, etc. So . . . he has prescribed Celebrex 200mg twice a day.
The 50 mg Vioxx was working fantastic for me…whenever we tried to cut it down to 25 mg….I received no benefit by taking it. (Also, the reduction coincided with an increase in my migraines)….::::maybe “withdrawal” migraines). He told me they were basically the SAME medicine and this dosage (400mg a day) of Celebrex would be equal to the 50 mg of Vioxx.
My confusion lies in this. If they are the SAME medicines and equivalent dosages….then why change it??? Why would one be better than the other???? Anyone know???? Dr. Foster????? My PCP mumbled something about FDA approval of Vioxx on a sustained 50mg level… his babble made no sense.
::::hugs to all:::::
Susan
Vioxx and Celebrex are essentially “the same” in that both are selective COX-2 inhibitors, i.e. both inhibit the same enzyme. But they are not the same chemically, and therefore have differences in subtle and not so subtle side effect potentials and dosages. Your doctor is correct in his cautioning of you to stop what amounts to overdosing on Vioxx; you push the envelop, risk wise, by doing that, and while you might get away with it, his is the proper advice.
Sincerely,
C. Stephen Foster, M.D.
I took us more than 7 months to get a referral to Barnes (St. Louis), where we have finally been given the information we need to fight this. After some brief research early into my sons fight, but before finding Dr. Foster and this site, I feared we were being led down the path to blindness, one drop at a time. Something instinctively said “this is not right”. I am just beginning to develop the terminology needed to discuss this illness, and pretty much everyone, altho they care, they really don’t want to talk about it. And the stranger at the lettuce bin – really doesn’t have a clue either. So I was elated when I found Dr. Foster’s site and this support group. I have met very few of you, yet and already, I feel as if you have hoisted that elephant off my chest. I have had very little opportunity to vocalize my concerns or, more importantly, concur with the treatment plan Barnes ordered for my son and provide MY son with the support he needs.
He is a wonderful, compassionate teen who has struggled to keep some type of normalancy in his life. My son loves baseball. He has been the pitcher, shortstop and catcher for his team. This year, based on his performance and those of his team, they were two games away from the play offs when Bryant flared badly. He was one of two pitchers the team had…and at this age….they can only pitch a set amount of innings. The catcher was calling for the balls he wanted and Bryant could not make out what he was calling for. He never thought of quitting….wearing dark glasses, and protective gear, he pitched. It came down to playing three games on the last day with Bryant needing to pitch the championship game. He asked if the coach could put some tape around the catchers fingers….he asked for bright pink tape…thought he would be able to see that. Coach made decision not to try the tape, but told the catcher this would be a tough game for him because Bryant was just going to pitch and his job was to catch whatever he threw. The catcher rose to the task… the game went the entire 6 innings and two more in overtime. Bryant pitched a smoking 17 strike outs to the other pitchers outstanding 13 strike outs. Both teams left the field…knowing what a great game they played and knowing the extra challenge our team faced with Bryant’s illness. Bryant has said that day was the best day of his life. I have had to take back to the day many times since then. I remind him of what he said and tell him I know more are in store for him. And he is intuitive enough to know and has stated that it is odd that the best day of his life has occurred during one of the toughest times he has faced with his health. I tell him to fight….fight like he fought on that day…..hand in and do what must be done.
Cheryl
Thanks for posting your message on our site. it will be a very, very valuable lesson to hundreds of other mothers and fathers with children with uveitis. You have done EXACTLY what you should do, i.e. get into the care of a uveitis expert, in this instance, Dr. van Gelder; he is superb. Please tell us who are the other doctors involved in you son’s care: the general ophthalmologist, the “specialist”, the pediatric rheumatologist, etc. Who made the referral to Dr. van Gelder; you owe him or her a big debt of gratitude. Is the high ACE being followed up now? Although methotrexate has not succeeded in controlling the problem at doses that were tolerable, remember that there are many, many other immunomodulatory agents which can accomplish the job; it’s just a matter of never giving up, staying in the hunt, trying one thing after another until you achieve THE GOAL: complete freedom from all inflammation and recurrences, OFF all steroid.
With Sincerest Best Wishes for success, and soon.
C. Stephen Foster, M.D.
These exchanges are abstracted from our online support resource, Uveitis Support You will learn a lot about uveitis and about coping with this odd illness from reading this file.
Yikes! I am not sure what things I should know in order to make good decisions
CHEMO for uveitis? No way!
I understand, very well, being angry that you have not received proper care
When it comes to uveitis, you don’t have to be Black and poor to get crappy eye care in America
The incorrect treatment of this disease process knows no racial boundaries
I’ve never been on immunosupression drugs. What does that involve?
Can methotrexate (MTX) decrease the effectiveness of anti-depressants?
Please, somebody tell me I can give this eye disease back!!!
I am going to the opth. on Thursday, I seen my regular doctor on Saturday, I asked him to find out about a specialists for me. He told me he would look into it for me and let me know the scoop this week. I was wondering what are the good questions I should ask my eye doctor when I go in on Thursday? What is my eye pressure, vision level? Should I ask him for that referral? Yikes! I am not sure what things I should know…… in order to make good decisions about this . . .
Thanks for the help.
—————–
Later, Julie wrote:
Good Idea Liz.
I will print them out and show them to the doctor. To my knowledge I cannot make an appt. myself. I have tried to do that with a few eye doctors in the past several months (just to get someone in my city) but all would not book one for me unless my doctors office called them. Maybe it is different in the states? Either way I will be going for a few opinions, I don’t think I am going to settle for just one. I honestly would like 3 opinions of treatments and I would like the doctors to explain to me the effects of what they propose to treat me with, that way I can make an informed decision. Thanks for the advice,
Julie
Sounds like a great plan to me. I forgot that you are in the Canadian system. Yes, in the States, patients make their own appointments. What we have learned about the Canadian system, as a generalization, is that eye doctors seem to be slow to use immunosupression to treat uveitis and turn to this treatment only AFTER permanent damage has been done to the eye from inflammation; and then, frankly, only reluctantly. Many outright refuse to use immunosupression and try to discourage patients from seeking this treatment by providing misinformation (“your disease will burn out”; “there is nothing more I can do for you”; “methotrexate will make you sick”) and trying, frankly, to scare the patient. You need only read the material we have placed in the FILES section under CONVERSATIONS (left side of your screen, click on FILES) to read member accounts of these practices.
We are trying to encourage the use of immunomodulatory treatment BEFORE permanent damage is done to the eye for all of the obvious reasons. And, one way to do that is to arm patients with information about modern treatments and how to avoid the blinding consequences that accrue from persistent, long term inflammation and/or long-term steroid use. So, I am glad that you can print out those articles. Read them carefully and give them to your doctors to read. Then discuss with them moving on in the treatment algorithm (plan) to try a course of immunomodulation. It is the only way that most of us will recover, and your history suggests that you are in that group of patients that could profit from immunomodulatory treatment.
In the States as well eye doctors commonly do not prescribe these strong but effective drugs. I think it is because eye doctors, in general, are not specialists in treating the whole person (so to speak). The use of such medications is much more common in internal medicine, and Dr. Foster was first trained in internal medicine so has much greater comfort with these sorts of treatments and thinking and the routines that he and his patients must follow to monitor treatments than do most eye doctors. Even children tolerate these treatments well (just ask Glenn) and the use of immunomodulation will save their vision. So, it is common, when immunomodulators are prescribed for serious eye conditions, to have physicians work as a team. Rheumatologists, for example, often prescribe methotrexate (the drug I take) and the eye doctor and the rheumatologist team up, with the eye doctor monitoring the eye’s progress and response to the medication. That is one way to do it and seems to work very well. We encourage you not to be put off by “warnings” about how systemic treatments “can make you sick” and other such nonsense often stated, sadly, by some physicians not accustomed to their use. It is ignorance and has frightened many patients away from the very treatment that could save their vision. So, we encourage you as part of your search to inquire if the physician you are interviewing has experience prescribing immunomodulatory drugs for the treatment of uveitis. If they do not, ask for a referral to a specialist whose practice includes use of such treatments. This will most often be someone trained in the sub specialty of ocular immunology, or who works in a team as I described above. Dr. Foster has written extensively about these attitudes and practices in an effort to encourage physicians to adopt different attitudes and approaches. If you would like additional references we could track them down for you. Or, look in the Patient Information section at https://uveitis.org
Good luck with all of this. Remember, the goal is to preserve your vision. To do this, you will need to get to the point where you have absolutely NO INFLAMMATION at all (do not tolerate so-called “low grade” inflammation) AND OFF ALL STEROID. Steroid therapies will need to be employed when there is active inflammation, but then only briefly. Systemic treatments CURE your tendency to inflammation. Thus, use of immunomodulatory therapies it is also sometimes called a “steroid-sparing” regime.
To do this treatment is a journey of several years and requires the assistance of an informed physician, patience on your part, and that everyone on the team remain hopeful about licking this disease. It really IS possible to get well. Remember that and persist until you find someone that will join you in that effort. I am in the middle of my journey and it is so very encouraging.
Liz
Lyme disease? I can actually contract Lyme disease in the inner city? In the…”ghetto”? LOL
Thanks for your concern. I’m seeing an ophthalmologist who specializes in eye diseases. He insisted that I might have sarcoidosis because the disease in more prevalent in black women over 40. Yet the tests still come back negative. I’m screened for cataracts and glaucoma annually and everything checks out normal.
I am concerned about the vision loss in the left eye. What was 20/30 in 1969 is now 20/50. The right eye has always been weak — since childhood. Let me tell you right now that when I was growing up, eye care was low priority in my household. Many oculists didn’t take black patients, and there were NO black oculists. My father is STILL seeing the same oculist who missed (either innocent or on purpose) my uveitis. This guy still does cataract surgery the old-fashioned way and STILL immobilizes his patients with sandbags! This is why I really haven’t trusted too many doctors — There is still that notion that African American patients receive inferior care. BTW I was told at first I had posterior, THEN anterior. This was by THREE doctors who kept me on topical steroids for three months. I don’t like to take steroids because of side effects.
And I’ve been to the uveitis homepage. CHEMO? No way! That is a promise I made to myself long ago: If ever I was diagnosed with cancer I would refuse traditional treatment, and that would include chemo and radiation. I can’t put my body through that. Call it a personal conviction, a matter of the spiritual over the physical. I can’t and won’t do that. Faith, prayer and meditation has served me well thus far; it will serve me in years to come, whatever the outcome. And my question about seasonal episodes was not answered.
One of my coworkers also has uveitis, and says her doctor put her through the usual tests but everything comes back clean. We both wondered if seasonal changes aggravate uveitis. We also wondered if uveitis is more prevalent in African American women. We’re both over 40 and have been told by our respective doctors that there’s not much to do if there’s no underlying cause. Our flare ups happen at the same time — in late winter, early spring.
I’ve sought out doctors who I’d hope would treat my problems with respect and dignity, and NOT give me some song-and-dance “We can’t do much.” Sorry to go off like that but I believe this is why so many black Americans don’t get quality care. Either we can’t afford it or, if we can, we get less attention and care than others.
Unsigned,
from Indianapolis (4/7/2001)
For the first few years my flares seemed to come on in fall and winter also, but that has changed…it just happens whenever. I have episodes of optic neuritis and pars planitis, and just this past year was the first time I received any treatment for either started having problems in ’94).
I understand, very well, being angry that you have not received proper care. I believe that many of us have had bad experiences with either drs who do not specialize in the care of our disease(s) or the facilities they work from not allowing ample time for a correct diagnosis and/or informing patient about his/her disease. it really is amazing, some of the stories we could share on bad experiences… I’m trying to put all the bad experiences behind me, so that I can forge ahead and receive correct care. it is a difficult task, but vision is too precious to let go of without a fight. thanks to Dr. Foster and this amazing support group, the information that they have provided, I’m better educated on my disease(s) and can seek proper care and treatment. I no longer have to hear it said that nothing can be done without complications (blah, blah, blah). there are alternatives.
I wish you luck in your treatment and care,
Steph T. (4/7/2001)
Dear “Indianapolis”:
I will reply to each of your comments as best I can, interspersing your text with my response. I must say, I am VERY appreciative of your frankness and directness. It is very refreshing and encourages discussion.
Indianapolis: Lyme disease? I can actually contract Lyme disease in the inner city? In the…”ghetto”? LOL
Liz: YES, you can. Less likely, but quite possible.
Indianapolis: Thanks for your concern. I’m seeing an ophthalmologist who specializes in eye diseases. He insisted that I might have sarcoidosis because the disease in more prevalent in black women over 40. Yet the tests still come back negative.
Liz: In the MEEI series, patients later found to have sarcoid, but who were “negative” on early, repeated screenings for systemic indications of sarcoid, have been found to present with uveitis as the only symptom for up to 7 years prior to systemic detection of sarcoid. So, your physician may be right (or they may not be right). Time will tell. What, specifically, are the findings of granulomatous disease that your physician found that lead to the hypothesis of sarcoid? In my case, it was, for example, the appearance of bilateral “Koeppe’s” nodules in the iris. Recommended reading: Ocular Sarcoidosis
Indianapolis: I’m screened for cataracts and glaucoma annually and everything checks out normal.
Liz: African Americans are in the very highest risk group for developing glaucoma and should be screened at least annually, perhaps twice a year, past age 40 for same. Early detection and treatment is the only way to prevent blindness secondary to glaucoma.
Indianapolis: I am concerned about the vision loss in the left eye. What was 20/30 in 1969 is now 20/50. The right eye has always been weak — since childhood.
Liz: What is the cause of your vision loss? Aging, refraction error, early cataract, macula edema, chronic low grade inflammation. What has your vision specialist told you, specifically?
Indianapolis: Let me tell you right now that when I was growing up, eye care was low priority in my household. Many oculists didn’t take black patients, and there were NO black oculists. My father is STILL seeing the same oculist who missed (either innocent or on purpose) my uveitis. This guy still does cataract surgery the old-fashioned way and STILL immobilizes his patients with sandbags! This is why I really haven’t trusted too many doctors — There is still that notion that African American patients receive inferior care.
Liz: Yes, there is no doubt that racism and poverty have played a significant factor in the medical care many minorities in America receive. However, let me assure you, when it comes to uveitis, you don’t have to be Black and poor to get crappy eye care in America. Your experience is actually quite typical of most of our member’s experience. For whatever combination of reasons, the physicians with whom we consult don’t know enough about uveitis, and actually give out quite a bit of misinformation to boot. Just read member stories in this section.
Indianapolis: BTW I was told at first I had posterior, THEN anterior. This was by THREE doctors who kept me on topical steroids for three months. I don’t like to take steroids because of side effects.
Liz: Perhaps you have both? It is sometimes called “panuveitis” (uveitis / inflammation in more than one part of the eye)
Indianapolis: And I’ve been to the uveitis homepage. CHEMO? No way! That is a promise I made to myself long ago: If ever I was diagnosed with cancer I would refuse traditional treatment, and that would include chemo and radiation. I can’t put my body through that. Call it a personal conviction, a matter of the spiritual over the physical. I can’t and won’t do that. Faith, prayer and meditation has served me well thus far; it will serve me in years to come, whatever the outcome.
Liz: Yes, it is quite true that our faith-based attitudes and belief systems must enter into the treatment equation. I frequently use prayer, both as a comfort and as an intervention. The example you provide here, however, in my view, is not a faith-based issue ( . . . And I’ve been to the uveitis homepage. CHEMO? No way! That is a promise I made to myself long ago . . .) Rather, it is a good example of fear-based conclusions (as you say, a “personal conviction”) that we all reach about various things; in this instance, about your body. Your faith will provide you with an alternative strategy in the face of this “conviction” or “fear”; prayer or whatever is the important ritual. In my own personal experience, prayer AND “chemotherapy” are a powerful combination. I hope you might be able to consider such a powerful combination for yourself. You describe that you have, already poor vision in one eye, and that your other is at risk, with declining vision. And, since you are quite obviously an intelligent and thorough reader, you have no doubt discovered that the terms “chemotherapy” as applied to the use of immunomodulatory therapy for uveitis is overblown, hysterical, misleading, and leads to exactly the kind of reaction you report in yourself. This is immumodulatory therapy. That is its correct concept, not chemotherapy. Many different medications are available for immunomodulatory therapy; the choice of which medication to use is a very individual thing. I pray that you will examine your thinking critically in this regard. It could save your vision to do so.
Indianapolis: And my question about seasonal episodes was not answered. One of my coworkers also has uveitis, and says her doctor put her through the usual tests but everything comes back clean. We both wondered if seasonal changes aggravate uveitis. We also wondered if uveitis is more prevalent in African American women. We’re both over 40 and have been told by our respective doctors that there’s not much to do if there’s no underlying cause. Our flare ups happen at the same time — in late winter, early spring.
Liz: “Season allergies” come in several forms in my view. One is the allergic type (trees, grasses, etc.), and there is definitely a connection between these stimuli and some forms of uveitis flaring. The other “seasonal allergy” is in the form of stress. So, for example, some types of work have “seasonal” stress (for example, teaching), and stress can trigger episodes of uveitis/scleritis in individuals with a history of uveitis. I think that things such as mold and dust and sources of chemical sensitivity may also provoke inflammation. Someone else would need to comment on the possibility that such stimuli are sufficient, in and of themselves, to “cause” uveitis (as opposed to provoking episodes or uveitis). Whatever the provocateur, the recurrent inflammation such as you describe will need to be treated to prevent permanent structural damage to your eyes. Where external causes can be identified, those can and should be removed.
Indianapolis: I’ve sought out doctors who I’d hope would treat my problems with respect and dignity, and NOT give me some song-and- dance “We can’t do much.”
Liz: We have all met idiots in our search for adequate eye care. There is no protection inferred by class, race, or religion that I know of that will protect us from same.
Indianapolis: Sorry to go off like that but I believe this is why so many black Americans don’t get quality care. Either we can’t afford it or, if we can, we get less attention and care than others.
Liz: I hope you will examine your reactions further. There are NO BARRIERS at this time to you getting expert, informed, skillful treatment except your own attitudes and formulations. None at all. Your own thoughts are power, not what other people think about you; I think you know that from what you have written.
Best regards,
Liz (4/7/2001)
Once again welcome to the group.
I would first like to say that those of us who post to this site regularly are here to help anyone with this disease/diseases and associated conditions to get the proper, modern, effective treatment that they deserve as human beings. It is truly sad that racism plays a role in medical treatment and care. I have read of this and it sickens me. Now as to the lyme disease comment. Lyme disease is spread by the deer ticks’ nymph stage and is usually transported by mice and other rodents. You usually will not even know that you are affected by this until you start presenting with some of the signs. there have been cases of uveitis caused by the pathogen associated with Lyme disease where none of the associated signs and symptoms have been present. You mention that you have granulomatous uveitis, you also indicate that you have sinus problems.
Do you have ear problems too? There are other causes besides those you have mentioned that cause posterior uveitis. You really need to be seen by a uveitis specialist, an Individual who has dedicated his/her life to finding the cause and treating each case appropriately. Please allow us to help you find adequate care. I am humbled and saddened by the care that you have received to date. Much like that which I received and I now have significant vision loss because of inadequate care. I am 51, White and a male. The incorrect treatment of this disease process knows no racial boundaries. I as well as all of the members here are here to support you in any way that YOU see fit.
Wishing you good health and happiness,
Mike (4/7/2001)
Hi Liz,
No.. . I’ve never been on immunosuppressants..what does this involve? I have always been on the same sort of medication…prednisone, predneferin or predsol…and at present Acular.
Ally
There are many medications that can be tried for your disease that have not been tried in your case. It makes me sad to read about the care you have had because the disease you have is treatable. With the correct treatment, inflammation can be stopped. Basically, this is the idea, or “framework” for treating uveitis: Steroids are tried for some months; if the patient continues to flare (have inflammation) when steroids are stopped, then NSAIDS (non- steroidal anti-inflammatory drugs are tried next); if the patient continues to flare when NSAIDS are given, then those are stopped and the patient takes immunomodulatory drugs.
There are a number of immunomodulatory drugs, they are taken usually by mouth, sometimes by injection. These drugs usually put the uveitis into remission. For some people, the uveitis never, ever returns once in remission. (The “Drill”: A Patient’s Description of Her Treatment for Uveitis). The idea is that your body’s immune system isn’t working properly; it is misrecognizing tissue as foreign and attacking it, thus causing your symptoms. Autoimmune-related problems are very common (diabetes, for example, is an autoimmune disorder; arthritis, gut problems, etc., etc.).
In your case (and in mine), the autoimmune problem occurs in the eye; the body, essentially, attacks itself when the immune system goes amuck. Immunosupression treatment helps your immune system reset itself. It is complicated science, but the treatment, actually, is very straightforward. You take the medication for several years. Read Dr. Foster’s reply to the question: What is HLA-B27 Uveitis. It is exactly the sort of idea he talks about in that post. You need to get your treatment from someone who understand how to treat uveitis. You are being under treated. And, sadly, steroid will also cause problems (cataracts and glaucoma).
Can we help you find a uveitis specialist? You have probably already said where you live, so forgive me as I can’t remember. These online references will teach you more about the problem you have: That is a lot of material, but I think if you spend time with it and read it through carefully, you will get a very good idea about your illness and how is should be treated. Print out the Uveitis Glossary. That will help you define some of the terms you may not know. Where do you live? Let’s help you find an ocular immunologist. You may have to travel. It is so-o-o-o-o-o worth it.
My best regards,
Liz (3/15/2001)
Click and read . . .
Hello to all, including all the new members.
So here is the update. I sure felt like whacking Mike (her 12 year old) on the behind when the ophthalmologist asks how things are and he said just as fine as our September visit! As if I would make a rush appointment if everything was peachy! The Dr. said well obviously things are not fine and are getting worse – in the right eye! We were on 2 drops Pred Forte on the left eye only and 2 Advil per day. In Sept. right eye was fine. Now we have the left eye still occasional cell, pressure up to 23. The right eye is 2+ and we are now on pred forte 2X day in both eyes, still on the Advil. Doc isn’t sure what the flashing is, retinas look ok. We are to try and document those better – when he has them etc. So, I am a little bummed out thinking that we were on top of things. So back in December to see how things are then.
Lori
Sorry to hear that Mikes eyes are challanging you both. Eric gets mad at me too. When I go to the doctors even when things were bad I would say i was great. Refuring to my life in general. I figured that the doctor knows that things are not good or I would not be there. Try not to stress, you have to take care of yourself too. Happy days Holly Dear Lori and Holly,
When I was a kid, I used to memorize the eye charts so I would not make my parents upset if I couldn’t read it. I used to be able to read through the middle of the 20/30 line, so every visit, whether or not I would see it, I would say ” OFLCTAPEOTF TZ…. Umm, Can’t see any more than that.” And that was acceptable, because my vision was okay to them. If they knew I couldn’t read much better than the big E, they would be upset, and I used to think it was my fault. I know it wasn’t me, but that was how I helped them cope. Then, one of the nurses got tricky and started giving me numbers! Oh boy! That was definitely an eye opener!!
I will be hoping for a good visit for Michael in December! Take care!
Jess
Hello to all,
Welcome new members. I hope that you are finding the information than you are looking for, you have found a great group and will discover it I am sure.
It has been a hard 12 days with the passing of my mother. I am handling it with the help of my friends especially all of you who support me on the site. Going to Boston was the best thing I could have done in this difficult time. When ever I get too stressed i just think of all the fun we enjoyed on the walk, it was so good to meet so many. if there is anyone I did not get a chance to talk to I hope that I will have the oppertunity to meet at a latter date. I still have not had a chance to catch up. I hope that everyone is winning their battles. i feel confident that i will.
I arrived late sunday night. To my suprise the next morning I was told I had receive a letter from Dr Foster. I must tell you just when you think the best can’t get any better he does. I have never meet a more thourow doctor or person. Dr Foster is a man with a purpose. For thoses of you who know him you know what I mean, for thoses of you who will meet him in the future know that there will be no idle chatter as I suspected. But you will get the knowledge that you antisipated. He will not be you buddie but he will be your best advocate for the best posible care you counld ever deam of having. He is brillent and not affraid to make a mistake. He is sure of himself but very Humble a unique combination that is lacking in many who call themselfs doctor. he is tireless in his quest for the answer to solve the puzzles that so many of us possess with this rare eye problems. Yet there is no dought for me at how much he really cares for all of us at this site and all those who walk through his door. For any who dought the motivations of this mortal man called Dr Foster dought no more for he is truly out for you best possible out come.
There are several avenues that he has sugested for my doctors here to investigate. I will keep you informed if anything unfolds. I wish that the man could be cloned but since he can’t I would encourage anyone who is not sure if they are getting the right treatment to see the best. It will be worth every pennie you spend. My Eyes are doing very well. But the mischift continues eleswere in my body. Mabe I will find an answer, but if I don’t I know I have done all that I can.
I bet a couple of you are wondering who our spirt walkers were. I had two, Brenda and Tony from canada. i felt that since you are soon to be wed that you should walk together. Eric had Ritika (sp) from india. WE all had a good time and missed those who could not make it. The walk was very healing for me in many ways. Demi and her sisters Ashley and Brittney were a delight. Their parrents are doing a fine job. I am affraid to list all those that I met for fear that I will leave someone out. Everyone was special and an honor to spend time with. I took many pictures and if any come out I will send to Liz to put on the site if she wants. I don’t know how this remarable women ever had time to have a job. Wishing you all a healthy happy day.
Holly
Dear Sheila,
Do not have any information or experience to suggest that it does? Prednisone can affect mood quite a bit. I found that, at higher doses of MTX, I had less energy. There are many ways in which this can “feel” like depression; but, I also observed that I did not have the cognitive changes usually associated with depression. That is, I did not have a paucity of ideas or thoughts. In fact, my imagination was quite lively; but, my follow through was not. By “higher” doses of MTX I mean 40-50 MG Week. I found that the combination of MTX and prednisone, for me, was difficult. Once I was off the prednisone, I felt much better, even at higher doses of MTX. So, if an N of one has relevance, that is my experience.
The rheumatology literature reports that patients taking MTX for arthritis do seem to have some cognitive changes on the MTX that are subtle. However, this is not necessarily a good comparison group because the age is higher and the disease process itself is quite debilitating, with lots of side effects from multiple other drugs confounding the picture often in this population. I found that I was quite fatigued for the first week or two of an increased dose of MTX, then it all seemed to go away and not be very noticeable. With each dose increase there was a period of adjustment.
The basic answer to your questions is, “no, not that I know of”. Hope this is responsive to your question.
Liz
____________________
As always, yes, your responses are VERY helpful. It is probably the added stress of the increase in meds and the disappointment of having to do it and the worry of what it will bring, no?
You’re great! Thanks,
Sheila
To the person who inquired about injections:
You should plan on taking the rest of the day off. The other thing to be informed about is the effect of injections on intraocular pressures. This is the more important emphasis to consider. That is, specifically, since you have never had an injection before you will not know if your eye pressures will rise after being given an injection. If they rise with prednisone drops alone, you would be well advised to discuss the risks with your physician of actually having the drug injected. They are substantial. If prednisone drops do NOT cause a rise in your intraocular pressure, then the prudent next step would be to get the injection in a SHORT ACTING form. The longer acting, depo form, can be quite dangerous in a person whose pressures rise in response to injections, so the only way to know is to try the injection. The short acting injections, if you do have a pressure increase, are safer. If you receive a long acting injection it will last for weeks and weeks and, if you were a “prednisone responder”, then it would pose a significant management problem to get the pressures down, including, as a last resort removal of the injected material surgically. High pressures can kill the optic nerve, so this is an important issue.
I recommend that you go to the glossary and look up GLAUCOMA. Under glaucoma, you will find a link to information about IOP (intraocular pressure) and steroid injections.
So, to distill this longwinded post, know the answers to these questions before consenting to a steroid injection:
With regard to the work issue, I think I did respond to you earlier about this. You should plan to take the rest of the day off.
Since the injection is given with an anesthetic (usually), your vision will temporarily be compromised as the muscles don’t work as well briefly (you can see double). After the anesthetic wears off, your eye may ache some, or it may not. People and technique vary. Patients are generally advised to not drive a car and to take it easy for the rest of the day. After the injection, to minimize swelling, press IMMEDIATELY for a minimum of three minutes along the underside of your eye (along the “pouch”). Take care not to actually press on your eye, but rather the tissue under it. 3-5 minuets will help minimize swelling. Cool compresses later, or a properly insulated cold pacs.
Hoping this is helpful.
Liz
Great post and advice. I have a question: If pressures go up slightly, but are still in normal range, is that a reaction to the steroids? I’ve had this happen but I’ve never been out of the normal range. How are things going with you. Get your treatment today? I hope it went well, if you did.
Brenda 🙂
I don’t know the answer to your question. But, it seems likely to me that if your eye pressures go up each time you have had an injection, even by a small amount, it is reasonable to conclude that the added prednisone may be involved. Ironically, pressures can go up after an injection because the injection is effective in quelling the inflammation. If the ciliary body was involved in the inflammation, it may/will produce less aqueous humor. So, paradoxically, as that (ciliary body) heals, more fluid is produced. So, for example, when I had active inflammation, I developed HYPOTONY (low IOP) because the ciliary body was not manufacturing fluid efficiently. As that got better, the fluids were produced at a normal rate, but my meshwork (drain) was somewhat clogged up with gunk from the inflammation, so the pressures went up. Did I get it right Dr. Foster?
It is complicated stuff. Your eye doctor needs to be paying attention.
I have a treatment tomorrow. Saw the glaucoma group today for a workup, so postponed the treatment. I’ll report in tomorrow.
Take care. Congrats on the job. First rate.
Liz
Yes, Liz, you understand and got it perfectly.
C. Stephen Foster, M. D.
Apparently my school has services such as “interpreters, readers, note-taking assistance, and parking permits”. I guess I don’t even know what kind of services I need! Sometimes I cannot make it to class due to pain / photophobia, or cannot complete assignments on time or be prepared for tests due to those things or the wonderful effects of steroids. I am not sure that special services would extend to arbitrarily excusing me from class and allowing me to turn things in late? But it seems that those are allowances I need sometimes, just as people who are disabled in other manners need their specific assistance. I am nervous about having to explain it all, dealing with the people who say “but you don’t look sick”, and having to explain to my doctor all the effects this is having on my school work. But I will do it! I am going to make an appointment with my advisor tomorrow, and of course I will keep everyone posted. In the meantime, if anyone has any ideas or suggestions, they would be much appreciated!!!
Kristin 🙂
My name is Brenda and I have received disability support at the University I attend. A friend of mine suggested I go to the Office of Students with Disabilities when I no longer could read the overheads. I was hesitant because I did not really feel that I was disabled or qualified for any special assistance. I felt there were people who were worse off than me and also that because my disability was evident to those around me, people may feel I was abusing the system. Despite those feelings, I went to the office. My vision was deteriorating on a daily basis and I was getting more and more frustrated. The people at the office were wonderfully helpful. No one judged me and all they wanted to do was help me. They set me up with note takers in all of my classes. The note takers received carbon paper and would give me their copy of the notes at the end of class. All of this was done discreetly. In a class of 300 people, I didn’t want everyone staring at me and unless I actually told people about my disability, no one was aware of it. I received accommodations for tests, which were enlarged so that I could read them. The office also did scanning of my textbooks then edited them into larger print so that I could read them. I also received, as a government grant, a computer at home with all of the technology I needed to enlarge texts or have them read to me through the screen. Eventually, I overcame my hesitation of being labeled disabled and I graciously accepted the help that was offered me. This help allowed me to be competitive in the University. I also imagine that if you need extra time to do assignments, that will be allotted. All you need to do is ask.
Good luck to you and let me know how it goes!
Brenda
I never asked for it and I don’t want it! I am so incredibly frustrated, it’s beyond words… I am trying to make myself better. It is so hard, I’m trying to be a good student but all I can think about is where I can go to next for treatment. I have phoned doctors and I have e-mailed doctors (thank you Dr. Foster for your response to me). I have gotten some good responses it’s just so incredibly frustrating to try to plan out how I’m going to travel, afford to travel, and take time off of school to travel, to get treatment. Why can’t it be easier… I just want to give it back.
Sorry for venting but I knew you guys would understand…
Brenda
Right now I wish I could take this pars planitis from you and start all over again with your disease affecting me. It brings me to tears when I feel the agony of what this crap does to all of you. I have been so very fortunate that I have not required the vitrectomies or the cryo surgery or the ahmed valve that so many of you have had to have installed. I have tried so very hard to help you and others get to treatment and I feel that I have failed to help you. I wish I had a response for you. Life just happens.
Wish you the best my friend,
Mike
Oh Mikey (dad), you have not failed to help me. You’re one of my biggest supporters and just knowing that you’re there for me and trying to help, is help enough. No one could ask for a better father figure than you! Yes, life happens, I will deal, I promise, okay? 🙂
Brenda
I am SO SORRY for all that you are going through, and have had to go through. I have been standing in the “Uveitis Return” line for awhile and it does not seem to be moving at all 🙂
What can I do to help?
Hugs,
Kristin
Just being the good friend that you are is help enough! Thanks 🙂
Brenda
How I wish that I had the answers or the right words for you. You have every right to be so darn mad about this disease! It is so frustrating for us to not be able to find you someone in your area to treat you the way you should be treated!
I know financial issues can be such a barrier for some of us. If only it were easy to just hop on a plane and get the treatment right away, huh? A perfect world it isn’t… especially these days. I am here to listen, anytime. That is all I can offer at this time. Hopefully, knowing that we are all supporting your efforts, is enough to keep you going, Brenda.
Love and Hugs,
Gae
Thanks to you for your kind words of support. Everyone at this site is so wonderful, helpful, and understanding. I am at the point where I don’t care so much about the cost as I do about making sure I graduate… there are ways to get around it, however. Your words
always inspire me, Gae.
How are you doing? How is your family? Hope things are well.
Hugs,
Brenda
I want to give my eye disease back, and I don’t even have to travel for treatment. Do you know where I can ship it to?
Liz
Maybe a cave in Afghanistan. Have you recovered from the weekend, Liz, and how is your scleritis?
Cindy
I think that at next year’s walk, there should be a “Return Uveitis” booth (as Kristin so eloquently put it!). There would be a long lineup but I think it would be well worth the wait! :-). What do you think?
Brenda
Well put. Next subject. Walker #1 has spoken! How is everybody doing? I’m on circuit overload, trying to get out from under.
Here’s the script. I take on a project. I do it well. I can’t leave well enough alone; I do it better than well (or than it ever needs to be done); eventually folks get annoyed with me, or, they join in the spirit of it all, as in “the walk”.
Now, Walker #1 would say that I am overdoing (agree), and getting myself all stressed out (not sure about that); and, he could for sure be quoted as saying that stress is at least ASSOCIATED with RECURRENCE of uveitis flare (or, more specifically, what he actually said was recurrence of scleritis flares). But, we are splitting hairs here as I seem to have both; taking on more than I “should” under the circumstances (chemotherapy, chronic flaring etc. etc. etc.), “glaucoma”, CME, Scleritis, funky hearing etc. etc. etc. (don’t have all of those now; don’t panic. But, I agree, it is a very long list that doesn’t seem to be getting any shorter).
Do I stop? Of course not. So, not enough to do, Liz? How about taking on auditioning for an orchestra. So, now my elbow is sore and I can’t practice. ARE YOU STARTING TO SEE A PATTERN HERE? Well, OK. So, I am an “over doer”. I am a “hyper-reactor” in more than just my eyes it would seem. So, I go take one of those courses that Harvard teaches about, God, what was its name (something about Mind and Body . . .) they had a “branding” problem; had 4 or 5 names so I can never remember the ACTUAL name. Anyway, the group was interesting; no shortage of zealots there. And, I relearned some important things that it is easy to forget when you spend your life hyper-focusing from project to project.
This is way too long, I know. But . . . So, are you starting to see a pattern here? Well, I am. So, what can I do?
Now, have any of the rest of you noticed this pattern in yourselves or in me? I sure have. So, that’s the topic I propose for discussion. I don’t think I’m the only one in this group with this approach to life. Way too long.
Thanks for reading if you are the one who got to the end of this “rant” (love that phrase, Frances).
Liz
To all of you who read the “Rant” post:
There is an astonishing degree of insight exhibited in this post, and an extraordinary openness in publicly “confessing” such insightful epiphany. Whether or not anything important and long lasting will come of it, of course, only time will tell; it is so difficult for one to change one’s “soul”. But if ever there were a way to do it, recognition and confrontation of the issues is step number 1. I am so touched by this candor in an effort to reach out to help others attempt similar introspection. Incredibly complex matters. Complex way beyond my ken.
Thank you, Liz.
C. Stephen Foster, M.D.
Liz,
I am voting for number 4. Moderation in all things. I understand that you feel sad when you are not busy. I feel guilty when I am not doing something, even if there is nothing to be done. I, like you, play an instrument. I have found that playing my flute is good therapy. I am doing something. I am busy. But I find playing to be stress-relieving, wonderful, a good confidence-builder, etc, etc. Anyone else who plays can also add to this list. Playing is a wonderful thing. So maybe you could try playing more often (elbow needs to work with you on this, though), and letting some other things that are not so pressing, not so fun!, and that are very stressful, go on the back burner. Play when you feel you must be busy?
You don’t need to be sick (option 1), you obviously are unable to slow down (option 2), and i don’t think you should speed up (option 3). Four would be your only option, no?
This is one suggestion. I will think more.
Kristin 🙂
Spectacular, Kristin. My new motto. Absolutely spectacular.
Thanks, Liz
Liz! Wow!
When I read this, I thought that someone had wrote a synopsis for my mind (in part anyway). I too am faced with a similar set of upcoming decisions. I’m so so sorry to hear that your elbow hurts and that you have had to stop to reconsider things that you really love doing (that hurts tremendously). I also commend you for the amount of moderation that you are able to live with….teach me your secrets, as I can’t seem to do much less than go go go, without getting very sad and frustrated. I am so glad that you wrote, because I believe there’s healing in speaking what goes on in the mind. I really hope that soon things will calm, and you will be able to resume with things you love, and that I will be able to hear your masterful playing (which I’m really looking forward to!). Hang in there…you’re strong and I know things will work out for the best!
You’re in my thoughts.
eHugs,
Anya
Hi, Anya. Thank you. Much appreciated. So, you know the sadness bug, too? What are you sad about do you imagine?
One of the techniques I use is to sit with the sadness; I don’t really know exactly what it is about; but, I ask myself, why run from it? Actually, this is something I learned from my uveitis; the “floaters” used to bother me more than they do now. So, instead of complaining, so to speak, about them or “wishing” them away, I looked at them with some curiousity. They reminded me of the “fire flys” of my childhood, and that image has stayed with me to this day. Fascination and non-judgemental observation is so peaceful, don’t you think.
I’ve posted this before, so those of you who have read it bear with me.
So, Anya, what makes you sad? And so very, very, very busy. You make me look like I am in slow motion; and that, as Mike would say “young lady”, is no small feat.
Liz
Mindfulness
The game is transformed by summer’s heat.
Evening quiets the mirage.
Darkness hesitates so the fireflies can play and
cast shadows on the screen of my mind.
Shimmering stars beckon the players to rest.
Liz
11 December 2000
It is, of course, a reflection on uveitis
The game (life/vision)
Summer’s heat (inflammation)
Evening (medications/meditations)
Mirage (visual disturbances/ocular migraine)
Darkness (blindness)
Fireflies (vitrious “floaters”)
Screen of my mind (retina)
Shimmering stars (effects of macula edema)
Players (patients)
Liz
Liz,
I love it when you rant!!!!
I as well as many others know the frustration of trying to be a functional person with our limitations that most of society CAN’T SEE so they EXPECT US to act like everyone else. All through our working careers it has been DO MORE WITH LESS and the stress level has made us flare from whatever the disease process has been, arthritis, uveitis, diabetes, Chron’s, Multiple Sclerosis etc. You are one of the most caring individuals whom i have ever met (albeit on line). We work harder so we don’t need some of the drugs to counteract our depression or what ever and try to block out the pain, blurred vision etc. My internist always comments on HOW GOOD I LOOK. What am I supposed to do; cry when i go in?
Scream and complain about how miserable my life is at times? NO, that is not me. At least I have xrays and MRI’s and nodules on my fingers and when he looks in my eyes he remarks. ‘I can’t see your retina!’ DUH! I have uveitis U VEE EYE TIS My eyes are full of garbage! Haven’t you been listening to me for the past three years???? The opthalmologists are just as bad. they only want the EASY STUFF. Cataract surgery on old people, Lasik on normal people. Tri focals etc. None of them will GO ON LINE LIKE WE DO AND FIND OUT WHAT THE HELL IS GOING ON WITH US!!!!
Then we take the information to them and they say something like “I READ ABOUT THAT SUBJECT TOO (30 YEARS AGO)”. All of us can relate to your frustration. some are just now experiencing this stuff and they look to you for guidance just like i do. We also look to Dr Foster to help us sort all of this stuff out. We read and understand more than most of those treating us.
Dr Foster’s treatment algorithms make sense, common sense! Stop all inflammation and ya stop the deterioration of the systems affected. It is just that simple. Why can’t the medical world figure this out. My god if it was their bank account that was slowly deteriorating, missing funds, they would stop that! Why can’t they stop the inflammation that is robbing us of our vision? Especially when there is a way to do it as Dr Foster has outlined.
Maybe we should all write letters to the National Eye Institute and have them start publishing the treatment methods that they use for uveitis, especially since it is the same as that which our Dr Foster employs.
I guess I got on a soap box again. I’ll behave tomorrow!
Mikey
Mike,
Well said!! Wow, a lot of powerful feelings and posts tonight!! I bet you are glad you got that out! You are right on with everything you said.
Like your point about the internist saying how good you look. Recently went through something like this myself. I have bad friends (Anya, back me up here!!) They are unsupportive and uncaring re: my disease. They are also no longer my friends. One recently asked why I was not talking to her, and I explained that she was uncaring and uncompassionate to me in the face of my medical problems, and to me that translated into a bad friend. And she actually said that she expects my eye to flare, and I should, too. She’s not surprised, therefore does not ask since she has heard it all before. Plus (and this is more what relates to your story – I am getting there, promise!) she said that I deal with it so well, how would she know that I needed support?
Let me just say that most of the time, for reasons of medical problems or dealing with idiots like this, I feel like: banging my head into walls, kicking and throwing things, crying, etc. But I don’t, because that is not solving anything (and with most of our disease processes, this has the potential to make things worse!). I try to see the bright side in things, yes, even U VEE EYE TIS, and move on with my life in the best way that i know how. I guess there was no point to this story, really. Just venting and getting it all out!
I will redeem myself with a more interesting, pertinent tidbit: I was recently in Michigan, out at a pub with my boyfriend’s friends. I was not drinking (MTX) and when asked why, I explained that I had uveitis and about the new medication. One of Joe’s friends jumped up and said “Hey! My sister had that!! You have that!” He was freaking out, had never heard the word spoken other than in a doctor’s office!! His sister was misdiagnosed (at Crittenden, for you MI folks) with pinkeye SEVERAL times. She was finally treated (steroids) and has not had an exacerbation for some time.
Lucky girl. Interesting story! That is the closest I have come to meeting someone with uveitis.
Kristin 🙂
Hi all.
I was going to take a few days off from posting and just do some lurking but I feel I must respond to these rants. WOW. I get you guys. Liz moderate, don’t overdo it. You’re such an incredible person and I want you to be stress-free. Sometimes that seems like an unattainable goal :-).
Mike: Somehow you got into my mind and put everything I was thinking into words!!! How did you do that? Are you psychic? 🙂 I know, we all face so many of the same obstacles that we can really connect with what is going on with each other. I have never experienced this before in this crazy disease process. 13 years I have dealt with this, unknowing because doctors are UNAWARE!!!
As many of you know, I’ve been dealing with this situation where I JUST CAN’T FIND A DOCTOR NEAR TO ME, WHO WILL TREAT ME!!! AAAHHHHH! I’ve got some major thinking to do on my situation which is why I thought I’d just lurk for a few days. But… Liz and Mike, you have inspired me, yet again! Stop that, you two!!! I just wanted to veg out for a week straight.
Okay now I’m getting lengthy. Long story, short HA HA, yeah right! I met with the mother of the son who has iritis, last night. She is willing to do what it takes to get her son modern treatment. She said she might post here and I hope she does. I am hoping that we can get together and write a letter to our health minister. I also have a friend who is a news anchor here in Edmonton. I am seriously considering getting her involved, if she’s interested in a story.
What do you think guys? I have no backbone, so need suggestions. Another good friend e-mailed me today (you know who you are). And also suggested that it is ridiculous that some of us cannot get the treatment we need to help this crazy !@$%@#! disease!!! Sorry, I’m getting angry with the system. It is time to do something about this. We need to band together and get it out there… all across North America, Central America, South America, Europe, Asia, Australia, Africa…. EVERYWHERE. This is so incredibly unfair that some of us may have to pay thousands of dollars because we can’t get treated nearby.
Okay, I’m done venting and ranting. Sorry it took so long and please forgive me for going on and on and on …. What was that you used to say Mike? oh yeah, I remember I saw it on the PP Homepage. Hand in hand.
Brenda
These member profiles are abstracted from conversations on Uveitis Support.
The first indication that something was wrong with my left eye and got my attention was “floaters”. So I had my eyes checked with an ophthalmologist, about 4 years ago. His diagnosis was “take care of your right eye so nothing happens to it cause your left eye has limited seeing abilities”, floaters. After a few months went by and my eye was getting worse, while going outdoors in the sunlight my left eye bothered me because of the brightness. I knew something was not right so I started to search for another eye specialist. There I found out what my real problem was, uveitis, uvei what? and I had a cataract.
I’ve had in the past year, treatment with prednisolone (steroid) drops a few times a day, plus voltaren (nonsteroidal anti-inflammatory eye drops) and one other kind I don’t recall. Eye chart exam showed no improvement, frustration set in. Time for some pictures of the eye. An injection of dye in my arm and then bright lights and click a snap shot of the inside of the eye and blood vessels, this was not much fun. I had this done 3 times. I also had a few blood tests and a chest x-ray, all were normal. I, however, do suffer from Fibromyalgia (has nothing to do with my eye problems).
Some improvement, but not much, came after the 3 injections of prednisone (steroid). I could read a little farther down on the eye chart, that was good news. Now I’m off of the prednisone injections and my right eye has started to get inflamed, so I have been putting prednisolone (steroid) drops in my right 4 times a day for about 2 months or so and now I’m being weaned off of that.
The next step is a recommendation to a specialist at USC Doheney Eye Institute in L.A. on March 6th. I would like to say that any and all sight I have now is a blessing. I love nature and birding and I can see all of this, but it is a frustrating disease, there are good days and not so good days. Most are good. I am anxious to find out more from this new eye institute and dig deeper into what can be done and what is causing my eye problems.
Thanks, I wanted to add this to your other letters of experiences from others. I hope this will help others.
Sincerely,
Alyse from California
Hello,
Just thought I would write this so that you all could learn a little about me.
I am a 26 year old who has been diagnosed with pars planitis for 20 years, since I was six. For the better part of that time the disease was controlled by cortizone injections, at least until I was 18. Then I was put on pretnosone and scyclesporin and have been on them off and on since then.
After I turned 18 I went through a cataract surgery in my right eye where they put a lens implant in. I also had several laser treatments, Cryo treatments, and membrane peals done to my right eye about this same time. Right afterwards I went back for two different glaucoma surgeries and ended up loosing my sight in my right eye. Then back in 97 I started having major problems with my left eye. So since then I have been up to the Mayo Clinic in Rochester MN almost every week.
The major difficulty with my eye now seems to be that the inflammation is causing abnormal blood vessels to develop inside the eye. Because these blood vessels are so immature they break open quiet easily, or at least that has been my experience. The doctors have me on a no activity lifestyle, where I can not exercise or do anything strenuous for fear of breaking open these blood vessels. When a blood vessel leaks my vision gets very hazy. To make this worse the fluid producing part of the eye is surrounded in scar tissue so that there is very little chance of the eye clearing the blood out itself.
Also the abnormal blood vessels are blocking the area where the fluid would flow out of the eye. We have done several surgeries to try and fix these things: A surgery where they exchanged the fluid in my eye to give me clearer vision. They also did some cryo treatment and several other things at this time. A cataract surgery where they did not put an implant in. A surgery where they put a Ahmed valve in because the pressure was too high. Another surgery where they exchanged the fluid in my eye for clearer vision. They also did some laser treatment for the retina and some cryo on the abnormal blood vessels.
This surgery was done a week ago this last Friday and has improved my vision significantly. Right now I haven’t worked since September 21, 2000 because I have been legally blind since that time. That was when the worst of the problems happened. But as of this last Friday I was able to see 20/100 on the eye chart when I went for my appointment. After that appointment I was able to talk my doctor into seeing if I can go back to work when I see him again in two weeks. The doc is still a little iffy he believes that I will most likely have another bleed so he wants to wait the two weeks to be sure. But he does say that my eye is looking a lot better than he thought it would.
This last little while has been pretty good news wise for me. Sitting at home and doing nothing isn’t really for me.
Like I said, I just thought I should introduce myself a little here.
Denny
My name is Frances and I am 35 years old now. I have had uveitis related to JRA for 25 years. I am near blind in one eye from it and thanks to Dr. Foster and immunomodulators like methotrexate I have 20/20 vision in my other eye. If I didn’t listen to Dr. Foster, I would be blind right now and as it is I suffer from continued problems because I was allowed to live with inflammation for so long.
I read your posts and think to myself that you are headed down that same road and I hope you read my story and that it helps you to make the right decisions and do the treatment that provides complete resolution of your inflammation. We all know that chronic steroids are not the route to take because they cause damage in and of themselves. You see I was first diagnosed in the 70s and my mother took me to an ophthalmologist who was affiliated with the MEEI, but didn’t realize that he didn’t specialize in Uveitis. He had a backwards way of thinking and allowed low level inflammation to exist in my eyes and treated me for 13 years with steroids.
It wasn’t until I was about 24 and working as a nurse that I started to think something was wrong. My vision was declining and I was seeing lots of floaters and was looking through a haze. I then asked for another referral. He sent me to a retina doctor who was absolutely astonished at the damage to my only seeing eye and the cataract that was forming in it. She was the first one to alert me to the cataract and the blinding nature of the disease. I was told it would “burn out”, but what I was not told by my first doctor was that it would burn out after I was blind.
The retina specialist thankfully sent me to Dr. Foster. On my first or second visit to him, he said if I continue on the chronic steroids and have persistent flares, I would be blind in a few years. I didn’t want to believe him and was really angry. It took another year of flare ups and steroids to finally see the light. I went on the next step of treatment, which is the immunomodulators, and after a year or so of treatment I have been in complete remission since 1992. Unfortunately, because I let the inflammation go so long, I have glaucoma. I have had a valve placed to control it as medications didn’t work any longer. However, because of the glaucoma and inflammation I now have a badly damaged optic nerve.
Despite a low pressure, I recently suffered more damage to the nerve and now have a blind spot in my only one remaining eye. When I read your posts I think, Why would you want to be like me. Massive irreparable damage from prolonged inflammation and chronic steroid use that continues to haunt me with problems. The damage to my optic nerve is not treatable and I am a walking time bomb not knowing if it will produce more blindness.
I wished I had someone tell me when I was a lot younger that I would go blind and not that it would be burn out. I also have had bilateral cataracts removed. I am not a candidate for implants and dealing with contacts to see anything and glasses isn’t fun, plus your own lens is much better than a replacement as I have lots of glare since having cataracts removed. I don’t speak about my left eye because it was finished by the time I was diagnosed. The inflammation caused macular edema and I have no central vision because it was never treated and not having my inflammation properly treated when my cataract was removed has left me with poor vision that isn’t retractable.
I hope my story helps you to make the right decisions about your treatment.
Good luck.
Frances
Diagnosed with Uveitis at Age 11 and How that has Effected My Life
Hello my name is Holly.
I would like to thank all of you for sharing from your hearts about your personal experiences. I had my first flare up in march 2000. One Saturday night as I was getting ready for bed I noticed my eyes were slightly sensitive to the light and I had a bad headache right where people complain about having a sinus headache. The next morning I felt like I was in a vampire movie and I was the vampire.
I finally went to the emergency room sun night. I was told that I had pinkeye by the doctor. I was told to see an eye doctor I might need glasses. I convinced her to take another look. Still she found nothing but decided to do a cat scan since I was blurry in both eyes. She made an appointment with an ophthalmologist for the next morning. I did the whole Iritis what thing. My pupils were funny shaped. I was told to use dilation drops along with prednisolone every hour. He said I would get use to it in a day or two and be able to drive.
Three days latter he reduced me to every three hours. All the adhesion were gone except one and I had developed astigmatism I don’t recall if they went away but I also had wrinkled corneas and could not see. I just recently found out that I was 4+ but in less then three week no cells or flair. By April 25 I was weaned off all medication but by May 9 2+ in one eye and 1+ in another. I was put on three times a day and weaned to one drop every other day. I had to switch doctor because of insurance has changed at my husbands work.
This doctor took me off and it has been five weeks no flair but one scare. Thursday night I was slightly blurry with same headache. My biggest problem is that this has been happening with my eyes a week before my period for over four years. Both flare-ups happened at that same familiar time. I have had all the blood tests twice now nothing conclusive. Also a colonoscopie because my grandmother had crones. I am 38 and a mother of four I don’t spend much time on myself I don’t have it. Though I have had to slow down.
I am just starting to realize how serious this is. I feel like a sitting Duck. What if I don’t feel it coming on? Is that possible. Most of the time I am In good spirits. It has really helped knowing that there are others who understand how I feel. If anyone knows of a specialist in the NJ area I would like it just in case.
Have a Happy Day,
Holly
My name is Ramona and I am 27 living in Indiana. I have been suffering with uveitis for going on 3 years now. I lost my right eye to the disease in March of 2000 and now am going though this again in my left eye. I am just totally devastated by this. It’s bad enough being blind in one eye and now having to go through maybe losing another one to this. Nothing that the doctors do for me really help either. I am not responding to treatment very well.
My thoughts are kinda scattered right now, so please forgive me. I guess I could start out and tell you my story. I’m sure you are all familiar with everything that happens when you go through this, though. But, bear with me.
In February of 1998, I contracted Bell’s Palsy. This is paralysis mainly on the face. At least it’s where I had mine at. It was located on the right side of my face. My mouth would slant to one side, I couldn’t close my right eye at all, everything just seemed to droop and was very numb. This lasted for about a month. My brother gets the same sort of thing about every 2-3 years, so I knew what I was going through when it happened to me. Within two weeks of getting over that, I came down with Strep throat. Really bad. To the point that I couldn’t even hardly breathe for a severely swollen throat. This lasted about a week and a half. Then I went through the normal spring time bout of colds, head and chest. Never thought anything about it. Never even gave it a second thought. I thought that this was just my time to get sick.
In June of 1998, I noticed my right eye was getting kinda foggy like. I couldn’t really see out of it all that well. It was like a permanent shadow over the right side of my vision field. I just thought that I was extremely tired. Where I work, we had just installed a new computer software system that was going haywire and I had been working 12-14 hour days for weeks trying to get the system up and running by then. I was a first time contact wearer at that time, so I thought that maybe I just needed a break from them, so I quit wearing them and started wearing my glasses again. Well, it just kept getting worse and worse. I didn’t know what was going on. I even went as far as getting a new prescription for my glasses. Nothing helped.
One day, I noticed my eye was really scratchy. Like something was in it. I always kept eye drops in my desk. Working like I had been, my eyes would start hurting really bad and I would use those. Well, this time when I did, I mean, talk about incredible pain. My right eye went completely blood red, I was totally sensitive to light, couldn’t stand my computer screen even on the lowest possible brightness, and got an immediate headache. And I got scared then. I didn’t have a clue about what was going on with me. I made a doctor’s appointment for that day after work. I just went to my family doctor. I had no clue it was this serious. And he didn’t make it seem like it was really serious either. He gave me Gentimiacin drops and Econopred drops and told me to use them twice a day. I will never forget that. Twice a day! He said that it was an inflammation and that it would clear up in a couple of weeks. Well, after a month of severe pain, light sensitivity, headaches, things like that, things wasn’t getting any better. In fact, I was a lot worse. I couldn’t even hardly work. Sunglasses and Tylenol became my new best friends.
So, he sent me to an ophthalmologist. Now, I am not here to bash doctors. I really do believe that they have a God-given gift for healing within science, so don’t take me wrong or think bad of me after I say these next few sentences. Anyway, my family doctor sent me to an ophthalmologist. His family has national name recognition in the field of ophthalmology, so I thought, hey, he’s sending me to the best. Well, come to find out, it’s his FATHER that has the name, not the son, which is who I saw. In two months time, 16 appointments, I hadn’t gotten any better. I was really bad. So bad, to the point that it felt like there was so much pressure on my eye and that part of my head, that it was going to explode. By this time, I was off of work, living in a room with all of my windows covered with dark paper. I didn’t watch TV anymore. The light hurt too much. All I did was sit there.
At this time, I still didn’t know what I was dealing with. No one had given me a name for this. They just kept telling me that it was an inflammation in the eye. I remember the day that my dad took me to the hospital finally. He had watched me suffer with this and getting steadily worse for going on four months now. I couldn’t sleep that day. The pain was so bad, every time I would lay down, there was just so much pressure there. I would try to turn over on my stomach for some relief and nothing. I was up all night and all day like this. My dad came home from work that evening and my eye was almost totally swollen shut. That’s when he packed me up in the car and took me to the hospital. And this is when I found out just how bad I really was and how far gone I really was.
When the ER doctor examined me, he was in total amazement. He couldn’t believe that I had been under a doctor’s care now for 3 months. I had ulcers all throughout my iris, my retina was just a big blob, all swollen and puckered, I had one of the worst cataracts he had ever seen on a person my age, I was a mess. He called in another ophthalmologist from the area. I didn’t get to hear all that was being said, but he was furious. That’s when I found out that this was called Uveitis and that in my case, I was legally and permanently blind in my right eye. I was devastated and can honestly say here that for the first time in my life, I had thought about suicide. I had always been in perfect health. My whole family is. And now, I’m sitting in this hospital and someone is telling me that this is it. There was no help.
The ophthalmologist sent me on to another ophthalmologist that specialized in Uveitis. From there, I went through the Vitrectomy, I went through the numerous steroid shots, the countless appointments. I can say that Dr. Walker did everything in his power to save my eye. I knew going into this that this was all that could be done. He didn’t want me to lose the whole eye. And we failed. The last surgery I went through was injecting silicone oil into the eye. I wasn’t holding a pressure at all. Normal is roughly in-between a 12-24. I was holding a 2. So, we did the oil shots. That worked and I held a good pressure for about 9 months. Then my eye became once again very red, very painful, swollen, and I was sensitive to light again. I kept thinking, what else is going to happen? Come to find out, my eye decided to go ahead and start making pressure on it’s own coupled with the oil that we already had in there and I had severe glaucoma. I was at a 46 pressure in two days time. In a matter of a month, my eye had become as Dr. Walker described it “an 8 ball”.
There was no iris left. Just one big black dot in the center of my eye. It was at this point that I had had enough. And I made the decision to have it removed. On March 21, 2000, I was wheeled into the operating room, had it removed, and then had a ball of coral implanted. This way, when I would get my prostheses, it would move. I thought that the nightmare was finally over. I was wrong. Like I said in the beginning, I am now in my 2nd month of having it in my left eye now and it’s fast becoming a harrowing experience. I’m 27 years old and I have to wear bi-focals now. Pred-Forte and Homatropine are my constant companions now. Prednisone at 60 mgs. daily are getting more and more easier to take, even with the bitterness. Pharmacists know me by name now. I’m getting used to my heart seeming to beat out of my chest because of the pills. Sleepless nights are great to catch up on things. I know. It sounds like I am whining. I am really trying to be strong and brave through this, but it’s getting so hard.
I see what my family is going through with me. They have had to completely rearrange their lives around me now just to help me make it through my days. I have a beautiful car sitting out front of my house that I can’t even drive anymore. I have a cat that I can’t even tell by looking at her if she’s even breathing or not when she’s asleep. When is this going to end? How much more am I going to have to take? I see that people on other boards have gone through this for years upon years. I don’t know if I can take that. These past three years have been a living hell for me as it is. I can’t handle the thought of having to go through this another 10. Anyone out there have any pearls of wisdom or advice for me to try and live on?
Ramona joined Uveitis Support-MEEI on 11/26/2000
Brian’s story begins at the age of 7, when we realized he was not seeing from a distance. He has an older sister who was found to be nearsighted at this age, so I told him he would get to pick out some glasses the day I took him to our ophthalmologist.
After the nurse was unsuccessful in finding the right prescription and the doctor’s examination, the doctor said, in front of Brian, “Well, he’s legally blind. There are three possible reasons.” and he spoke as if reading from some text. Then he asked several times if we had any blindness in our family. (Other than macular degeneration, we do not.) They made an appointment for us to see a pediatric ophthalmologist the following week. He and the nurse walked out of the office and I was left asking “Doesn’t he get some glasses?” The nurse tersely said, “Oh no, that won’t help!” And continued to walk on. I busied Brian with a toy table in the waiting room and walked to the nurse’s station to ask questions, but didn’t even know what to ask. They told me he didn’t see color at all.
By this time I was so confused. We got in the car and while I was reeling, I realized my 7 yr. old had heard that he was legally blind. Of course what he understood was that he was blind. I don’t know if he will ever get over that pronouncement. His dad and I both tried to explain the difference between begin legally blind and being blind. Soon I began to see how Brian was already an expert at compensating, without knowing what he was doing. For instance, I had just bought him a little lap-sized pool table. I heard him explain to his cousin that he had memorized the numbers on the balls by their color. When you played with him, you had no idea he wasn’t reading the numbers. I also began to see that I had been his eyes much of the time.
When we went to the pediatric ophthalmologist they did an exam and partial ERG, but only got results on the rods, which were functioning normally. Brian couldn’t tolerate the device any longer, so we never found our about his cone function. The only conclusion they came to was that he had one form or another of a genetic degenerative disease. They said to come back when he was 10 and they could probably get better data.
I came home to begin my study about RP, Stargaardt’s, cone-rod dysfunction and all the rest. I had no idea what to do with a child with low vision, but the public librarian sent me to the library for the blind, who sent me to the department of human services, who sent me to the public school vision teacher. (I home school Brian.) I began to read about low vision and blindness. The vision teacher and I decided to introduce Braille, believing he was destined to blindness. Our ophthalmologist recommended a certain seasoned ophthalmologist in a distant city to get a more definitive diagnosis. This doctor was the first to find floaters. From the fluorescence angiogram, he concluded that Brian probably did not have one of the degenerative diseases. He sent us home to do a short course of prednasone. This improved Brian’s vision from 20/200 to 20/100 to 150. It wasn’t much, but it did show that his condition was inflammatory in nature and not genetic. Brian perceived a big improvement in his vision. He was happy to have a name for his disease, pars planitis! After all the blood tests and chest X-ray, thankfully he fell in the idiopathic category. We were happy to think he was not necessarily going to be blind. The only prognosis we got was that the disease burns out in adulthood, and were told that some people get improved vision and some do not. This seemed so much better than what we had been thinking. Then my study took a turn into uveitis, a whole new world!
The next spring he flared and we did another short course of steroid. After observing for these 3 years, he seems to have his worst flare in the spring. His vision continues to fluctuate between 20/100 and 20/200, with some pulling away of the vitreous base and the resultant flashing lights, and I believe, epiretinal membrane. He says his vision has always been like this, but he has never had a hint of nystagmas. He did tell me his vision is clear in some of his dreams. We will never know how long he had this condition before we found it.
Kelli
Liz Hi,
I am giving you more detail than my last letter about my son John. I was first told he had pars planitis about 5 years ago. He was immediately put on Acular 4 times a day in both eyes, Trusopt twice a day and Timoptic twice a day and FML any where from 1 to 4 drops a day depending on the amount of inflammation and his pressure. His pressure at times has been as high as 32, but usually sits around 18 to 22. The doctor we go to in Oshawa, Ont. Canada is a retina specialist and seems very thorough with John and does not hesitate to get another opinion from others. We also went to Dr. Rabinovitch in Toronto twice. He idea in treatment was always the same as hers. Dr. Baziuk in Oshawa sent us to a Dr. in Montreal in Jan of this year. He put John on Vioxx at the time and took him off the FML (but left all the other drops as is) The Vioxx was given to see if it would get rid of the inflammation that is causing his retina to separate. John took that for about 2 months with no change. We were then sent to St. Michaels Hospital in Toronto, to a Rheumatologist ( not sure about the spelling) to make sure there were no underlying problems that have surfaced since being check for everything under the sun when he was 12. Nothing showed up other than good old Uveitis (chronic inflammation). At this time Dr. Baziuk decided to put John on 50 mg of prednisone for 5 weeks to see it that would get the inflammation to settle down along with his same eye drops. We go again tomorrow Wed March 28 to another Rheumatologist in Oshawa. I am not really sure but I think it is just to be check because of being on the prednisone. I am not to pleased about having to put John on this drug but this eye sight is very important and if that is what it takes I guess we have no choice. We go back to Dr. Bazik the second week on April. I pray when we go back that the prednisone has done its job and he can start to go off it. She did also mention she may add MTX to a lower dose of prednisone depending on what see finds when we go back to her. I hope this explains a little more the problems we have been having for the past 5 years . Thanks for your reply. Susan Chapman P.S. John got this when he was 12 and is now 16 he handles it very well and with glasses plays hockey as well as other sports but it is just the long term effect that constantly worries me.
Hello, my name is Pam and I’ve suffered off and on with uveitis since ’89. My old ophthalmologist never caught it during my high school and college days, although early-onset glaucoma runs in my family. My take is that he either never caught it OR never bothered to tell me. I’ve had the usual symptoms: photophobia, pain, throbbing, redness, blurry vision, loss of acuity. I finally got a new doctor in ’92 and I haven’t a serious episode since. He put me on Prednisone and atropine, then on Flarex. The latter was far more effective than the others, with fewer side effects. Right now eyes are OK but I’ve lost visual acuity, esp. in the left eye. My doctor has done all the usual underlying causes. Lupus, rheumatoid arthritis, sickle cell, sarcoidosis, diabetes, lymphoma. Everything keeps coming back clean. I haven’t had MS screening, perhaps because I don’t WANT to test positive for MS. But let me throw this at you. Tell me what you think. My attacks flare up during the late winter and early spring, and then late summer. I seldom have uveitis flare ups in winter or late fall. Could changes in light, air pressure, humidity, air temperature, be factors that trigger the symptoms? So far, the photophobia’s been the most bothersome. I’m back on Flarex for the next ten days until the symptoms cease. BTW, my pupils have shrunk to the size of pin dots…They’ve always been smaller than usual, but now they’re really tiny, even in a darkened room. I have them dilated occasionally but I really don’t want to depend on drops and steroids (which I really don’t want to take because of side effects). I’ve been looking into alternative therapies. What about bilberry supplements? I know it’s effective for improving night vision but how is bilberry with other eye ailments?
Thanks for having me in your group. Sorry for lurking for so long. 🙂
Pam (4/6/2001)
My name is Kim, i’m 32 and live in WI. About 12 weeks ago I was diagnosed with ulcerative colitis, after several years of denial of symptoms. I am taking sulfasalazine and things are going pretty good. Looking back in my medical history I have had UC for quite some time.
About a month ago My eyes seemed rather irritated. Dry, achey.
This was preceded by one of the worst headaches I have ever had. When I returned to work (this started over a weekend) I started putting rewetting drops in my eyes they were so uncomfortable. My left eye became VERY red and irritated. Noticebly so – people were commenting on them Being a mom, I assumed pink eye. I remember feeling like my eyeball was too big for my eyelid to cover when I blinked. It also felt like it was throbbing. I sat in the dark at work as the light really was bothering my eye. So I went in to the eye dr. and recieved the iritis/uveitis diagnosis. I started out on prednisolone every 2 hours and homatropine 3xday.
After a week he cut me down to every 3 hours and had me continue with the dialting drops. He also had me start putting the pred in the right eye. Things seemed to take a nose dive last week. The right eye looked good, but the left was getting worse. He mentioned the injection if it doesn’t look any better on Wednesday.
Typically do these things occur again (we are checking but I may have had a bout of this about 7 or 8 years ago)? If so do they tend to clear up faster when they recur? How is your vision affected by the injection? I am having some issues driving at night. The halos around oncoming lights are literally almost blinding and I am getting a little scared to drive after dusk.
Thanks again!
Kim
Hello everyone. I know I just kinda jumped in when responding to Kristin’s message about school, without properly introducing myself. I just really felt I knew where she was coming from. Anyway, my name is Brenda. Mike B and Jess S should know me from the PP Homepage. I actually had joined this group last summer but my computer crashed then I got into being a student and found I had no time for anything but school. I am 30 years old. I live in Edmonton, Alberta, Canada. I was diagnosed with Pars Planitis / Uveitis when I was 17.
Actually, I didn’t even know that PP was a form of uveitis until Mike enlightened me. I can’t believe how much I have learned and will learn just from reading the posts on this site! Thanks to everyone! About a month ago, i had a vitrectomy in my right eye. So far, so good, but I still have no vision in the top of that eye. The doctor assured me it would come back, but I’m wondering if it’s a permanent blind spot.
Does anyone know if there is a list of questions that I could go to my doctor armed with? Where I live, there are a limited amount of doctors who are specialists of the retina. There are two here in Edmonton, and one in Calgary. These 3 doctors cater to patients in Northern British Columbia, all of Alberta, and all of Saskatchewan. Needless to say, my doc is busy!!!!! He is a wonderful man, but I find sometimes that he lacks in explanations. He has never mentioned Methotrexate or Cell Cept and he is a bit on the conservative side. However, when I asked him to treat more aggressively, he really listened to me and agreed to do the vitrectomy. Another thing, I don’t even know what idiopathic means, or if that is how my condition is.
These are the kinds of questions, I guess, that I need to ask him. I also have Fibromyalgia. (I know I’m starting to ramble here, but it’s nice to share!). I joined a FMS support group through Yahoo groups last week and made a post. I have yet to here from anyone. What I’m saying is I’m so impressed with the level of care and attention that people receive at this website. It truly seems like you all are friends and that is important. Also, I have learned more from Mike B about Fibromyalgia than I have through the FMS support group. Now I’m rambling, but anyway Mike, you know I appreciate all the information you pass on to me.
Enough for now. Will ramble more another time. Seems like I spend more time researching my diseases than planning my wedding! Priorities, right? Health comes first.
Thanks to all.
Sincerely,
Brenda
Hi, everyone. My name is Cheryl. I was diagnosed with iritis in the fall of 1998. I only had it in my left eye at the time, but six months later my right eye decided to join in on the “fun”. My doctor first treated me with Pred Forte drops and Prednisone. He did a taper of both over the course of six months, and when all was said and done the iritis was not quite gone. The inflammation was very minimal, so he kept me on just drops. After a month or two, I had a terrible morning when I awoke with pain and redness so awful I wished for the sun to burn out right then and there! Of course, I had to drive myself to the doctors office (thankfully it’s only a mile away). He put my eye drops back to every hour in both eyes, and told me I had scleritis along with my iritis, but only in my left eye. He treated my left eye much more aggressively than my right. After what seems like forever, the inflammation was down, but never completely gone. I’ve been on low doses of Prednisone for over a year: had three BAD flare ups over that time.
Lucky for me the eyes don’t stay bad for very long. At most, a day or two. My doctor has run every test he could possibly think of trying to find some hint of an underlying condition. Of course, like many of you, he has come up with nothing every time. I was on Methotrexate for about eight or nine months last year, and took myself off of it after I was seriously ill from the Methotrexate reacting with Bactrim that I was given bronchitis (I know…I know…..BAD move to quit the drug without doctor supervision, but lucky for me I was okay. No flare up after stopping it.) I still was not completely off the prednisone, nor have I been since before then (that was back in the early fall of 2000).
In December 200 I had cataract surgery on my left eye (which is the one that has been predominantly the worst of the two). Surprising to my doctor, my inflammation stayed relatively quiet after the surgery. He had increased my prednisone to 60 mg a week beforehand, then did a quick taper afterward. Of course, no complete remission yet. In the meantime, the long term prednisone use has caused me every problem it possibly can: the bloating, mood swings, food cravings (which caused some big time weight gain, I might add), the high blood sugar, the achy joints when tapering, but worst of all are the muscle aches I get from it.
Recently I was taking 25 mg Vioxx daily on top of my 5 mg of Prednisone and my drops 4x daily. I ran out of the Vioxx two weeks ago. Four days after I was out of the Vioxx, another flare up. I went back to see the doctor who said I should be back on 60 mg of Prednisone AGAIN, with more drops (hourly). Not a word about the Vioxx. Not being happy with the answer, I went to see my family doctor a few days later (Oh! I didn’t take the Prednisone….instead I went home and took 400 mg of Motrin and felt pretty good an hour later!)
My family doc has recommended a trip to the U of M hospital in Ann Arbor to see a different rheumatologist. He wants a muscle biopsy done to see if we can’t find out more information on whatever underlying problem I may have. (I’m not completely convinced this is the right route, but…..). I am also scheduled to go see an allergist in the meantime. (I have found that my flare ups occur when the mold count is very high, or when I eat dairy products in large amounts, but because there is no research to back me up, my doctors don’t think I’m correct on that note).
Anyhow, I could go on and on….and there is much more to this story …. believe it or not! 🙂 I am hoping that someone can direct me to a uveitis specialist in my area. Has anyone had any experience with any doctors in Michigan? I did see one doctor out of Henry Ford Hospital when this all began, but he has since moved to California. (By the way, his treatment was basically what you’ve read above, as my current doctor was consulting with him a few times regarding me.) I have read through part of “the drill”, and have a question: once the inflammation is down and there is another flare up, do you start right away with the oral steroids and medications, or go through trying just drops at first???
Thanks for reading! Hoping for the best for all of us!
Cheryl
Welcome to this wonderful site. My name is Jane, I am from Sydney Australia and I have little Natalie who is 6 years old – has had JRA and severe chronic uveitis since she was three years old but I am confident that we are going to beat this.
This is a great place to ask questions and just to know that there are others out there from all over the world who care. Natalie had been on cyclosporine for 3 years and oral Prednisolone for 2 periods of time – the longest being 13 months. She also had cataracts develop in both eyes – yes she definitely had sight loss when she had them – especially as they became thicker. Eventually she had them both removed one at a time. We found by experience that by increasing her dose of Predmix (Prednisolone) 10 nays prior to each op. helped her with inflammation from the surgery. Also 1/2 hrly drops around the clock helped her to reduce the flare quickly. Certainly we were advised that Natalie must be inflammation free for at least 3 months prior to any surgery (in the best case scenario). The combination of medication that she was on upset her stomach constantly – she was constantly feeling queasy – however I truly believe that is what saved her eyesight. Every one of course is different, however that worked best for us.
With bets regards,
Jane L.
We received a dx of “pink eye” but the eye did not respond to meds given. I have been a psoriatic arthritis pt. for many years, and having a “one-time flare of iritis” and raised the ? of iritis, based on sons level of sensitivity to light and pain. Although I was made to feel my reaction was “over concerned”, my son was seen and dx with iritis. We began a ritual of pred. drops and drops to dialate the eye. Son appreared to get better….drops were decreased and then my son felt his other eye was becoming involved. Exam did prove that was true. At all points we asked questions….we were diligent with meds, and we received very little answers. “Everyone is allowed a case of iritis” was all that was given to us. After both of his eyes were involved, we pressed for labs, wondering if another dis. process was driving this iritis….after weeks we finally received the orders for labs to be drawn but only after our request for a pediat. rhuem. was honored. We were told all tests returned “normal” and that the drops were the course of treatment. We did not want something to be wrong with our child, but we had the “gut” instinct something was driving this…..months passed….drops weaned…flares ….drops often hourly….appointments with very, very little conversation from the Dr….even tho we tried to form that relationship. We asked about other treatment measures and were met with looks of indignation. Finally, in June, more than 6 months of treatment, my son flared again, both eyes still involved, flared without ever coming off the drops….just as the drops when decreasing. Dr did not even want to see him….only wanted drops increased again. My son was 12 years old at the time and his pain for six months was not addressed in any manner. He could not bear light in any form, reading was impossible and he missed so much school. Even thru all of this, he managed to do his work, when he could and made High Honors for the school year. He was active in sports and many community activities, before iritis. He struggled to stay involved, his eyes looked like hamburger alot of the time. Iritis impacted him at every level. Out of pure frustration, we took our son to a local “eye doc”….after the response we received from the “eye specialist”…we did not know what else to do…he saw a son immediately. At that point he alerted us to the possibility that our son’s eyes were very serious. He saw him on a Wed. was out of town on Thurs, and wanted to see him again on Friday. At that point, he told us we needed special intervention and referred us to Barnes in St. Louis. Barnes made immediate arrangements to see us. And finally we received the verbal exchange we had been longing for. Dr. VanGelder informed us “Your son has very sick eyes.” All threee levels of his eyes were involved, with punch out lesions. After much discussion the dis. was made to begin MTX,(15mg) with 1mg of folic acid. Also until the mtx began 65mg of oral pred. We also learned that he has a toxoplasmosis scar which occurred before he was born, this required 600mg of antibotic every day. Being on the mtx, might allow the toxo infection to become active again. We also learned that one lab test ran by the previous dr.(ACE) came back “high” and was never acted upon. Dr. at Barnes ran additional lab work. When we came home with the treatment plan, which included needed follow-ups with “specialist” we were seeing locally, he, at first set an appointment for two months later..we questioned shouldn’t our son be seen sooner…and were given a firm no. Shortly after that, his nurse called to inform us the Dr was withdrawing from our sons care. After many phone calls, and another meeting with Ped. Rhuem. learned the local “specialist” did not agree with the treatment plan. Felt the continued use of drops would suffice. This left us with hard questions to ask ourselves….and left us with and uneasy feeling. I did what research I could do….but still was left with a feeling of why would a Dr. reject such a treatment. It was so reassuring to find this site two weeks ago. Although, I have complete confidence in Dr. VanGelder….there was just something here that addressed “that gut instinct” of a parent was correct. I know this is long, and apologize for that, venting….for the first time…no one understands was is going on, even tho they try. I have not read “everything” in your site, but from what I have, I believe we are on the right track….but I did not see Barnes listed in your referral. If I go on the “gut instinct”, I feel Dr. VanGelder is the guy to go to.
We are still battling! Son cleared completely, for two months, altho became cushnoid. Once steriods were attempted to weaned he flared again. Had considerable reaction to being withdrawn from the steriods….we have had to go so slow…and are are 4mg now. Upped the MTX two more pills and he began to have complete exhaustion. Stopped all activities, slept most of the time and became very depressed. He said it was worth it, if it was working, but it wasn’t (Appointment 12/26) so he is coming off mtx. He just had an injection of kenalog in one eye. If pressure stays down, the other eye will be done….Dr. VanGelder mentioned that if son tolerates this well, there is a case study being done with a three-year dosing device….may not have the terminology right but is there a web site on that procedure, I could use to provide info?
Thanks again for the time given to this disease. My anxiety level remains high.
Cheryl
Hello Everyone,
Referred here by Mike B. who gets credit for putting me on the road to recovery. Interesting story. I was told I had Iritis by Ophthalmologist and put on Prednisolone drops. Was posting symptoms on another Website and Mike B replied that it sounded more like Intermediate Uveitis/pars planitis. Suggested I consult with specialist. Sure enough, the Uveitis specialist said it was Intermediate Uveitis, not Iritis. (1+ inflammation). Also found out I have Bilateral Optic Atrophy (pallor) likely from Optic Neuritis. Have been undergoing testing for last 2 years for MS, suspected because I see stationary objects moving and various other visual and neurological symptoms. All tests done, nothing definite found yet. Now plan is consult with 1) Neuro-opthalmologist to determine cause of Optic Neuritis and 2) Rheumatologist for extensive tests to see if treatable cause of Uveitis can be found.
Very glad that I sought the advice of the Uveitis specialist right away. I am so grateful for Mike and Dr. Foster and others here who are so dedicated to the cause of aggressively treating this disease. I’m pleased to be in such good company. Hope to get to know you and do what I can to support. There is so much to learn and this site is so beneficial.
Wish you all good health…
Sincerely,
Liz
Call Foundation at 781-647-1431 x407
Frances Barrett Foster, MS, NP, CS
Co-leader/Patient Representative
Email: ffoster@mersi.com
Alison Justus, MSPM
Director of Development and Programs/Patient Representative
Email: ajustus@mersi.com
Click here to listen to
Uveitis and Steroid-Sparing Therapy
Presented by C. Stephen Foster, MD, FACS, FACR
Audio-Digest Ophthalmology Volume 56, Issue 15
 |
|
|
|
