My Experience with Uveitis: by Darren

I woke up, and my life had changed forever. I did not how or to what extent it had changed, but I knew that my life would never be the same. That day I was late for my 7 AM history class, just like every other normal day of my junior year in a California high school. My right eye did not seem normal, something odd was happening. It felt as though there was some sort of pressure building up within my eye, and my vision was very cloudy. I hoped that it would clear up and the next day would be better. Later that afternoon my vision did not improve, if anything it had gotten a bit worse. I continued my day, and after classes went to cross country practice. As I ran I continued to test my vision by winking one eye then the other and comparing my good left eye with the affected right eye. It was a very intriguing experience, in one eye I had perfect clear vision and in the other eye it was if a cloud of fog had rolled onto the track.

As a ûknow it all” fifteen-year-old boy, I did not want to visit the doctor. However, as a student very interested in biology, I realized that eye problems, as with most health problems, could become more complicated if not treated early in development. Thus, my mother and I went to the ophthalmologist, concerned that I might have some sort of glaucoma or cataract. I was told that I had iritis. I remember thinking ûWhew, it was nothing major.”

My treatment was to be four drops daily of this whitish stuff, called pred forte. I was grateful that the cloudiness went away after a couple of days of using the drops. For the next six months I visited the ophthalmologist every few weeks. My vision seemed fine to me, but my doctor seemed concerned that I continued to have trace amounts of inflammation. Each visit was the same; still trace amounts, always just a few cells indicating some small amount of inflammation. I began to think of it as an annoying cold that I couldnÃt shake. Finally my doctor said that I was clear and did not have to come back to see her anymore. I was done seeing her unless I had another flare up, which was a very high possibility since the inflammation had persisted for so long.

For the next six years I continued to experience random flare ups, however in my ignorance did not see a doctor. The cloudiness usually cleared up after a day or so, but in my mind did not warrant making an appointment to see a doctor. It was not until my arrival at the University of California at Davis that I experienced a flare up that forced me to see a doctor.

The incredible pain and photophobia was unbearable. My vision was horrible; floaters plagued my sight when the cloudiness was not obscuring my sight. So began a two-year treatment marked with soaring intraocular pressures, reduction of steroids followed with iritis flare-ups, numerous anti-glaucoma eye drops (including the infamous systemic treatment of diamox). Secondary to the disease I experienced the beginnings of a steroid induced cataract, and the loss of my phenomenal 10/20 vision. Following an intensely high pressure, accompanied with unimaginable pain, I noticed reduced sensitivity to light, and a dark spot in my vision. I tried to believe that the cataract was the cause of these problems.

What was the most frustrating was the fact that my disease was so rare that there was not a textbook treatment for me. I was told that most people never experience iritis, and that only 1% of all iritis cases become chronic. A referral to a rheumatologist marked the beginning of methotrexate treatment. My rheumatologist told me that he had no way to gauge how the treatment was going, and that the only thing he could do was to prescribe the dosage and do the blood work to make sure the medications werenÃt doing damage to my liver. I remember thinking; ûOh great IÃm a human guinea pig now.” Unfortunately, the methotrexate did not reduce the inflammation before causing my liver enzymes to rise. The methotrexate was discontinued, and the next medication to try was cyclosporine.

At the time my methotrexate was stopped I was granted admission into the Genetics program, for work on a masterÃs degree, at the University of New Hampshire. My rheumatologist and I decided that the best course of action would be to hold off on the cyclosporine until my arrival[B.1] on the east coast. In the meanwhile I was to take 40 mg of prednisone a day combined with 1 gram of naproxyn to control the iritis.

When I arrived at UNH, I immediately made an appointment to see an ophthalmologist. I desperately wanted to reduce the prednisone dosage and various other medications that I was taking. The local ophthalmologist did not know what to do with my case, and communication with my doctors in California and the UNH health services doctor resulted in a referral to a doctor in Boston. I felt as though I was now being tossed to another doctor who would experiment with the array of arthritis drugs until my iritis subsided.

My friends who grew up on the east coast told me that Massachusetts Eye and Ear Infirmary is where all the big shot doctors and the best medical facilities exist. I had no idea what to expect, my impression was that my extremely rare case had no experts. Believing it to be just another routine visit, I brought a friend down with me who would take me on a Boston tour after the appointment.

Into the exam room came Dr. Letko. It seemed a bit strange that the assistant would be a doctor as well. After he looked into my eyes, I asked how the inflammation looked. I was told to ask Dr. Foster when he came to see me. After the exam Dr. Foster and Dr. Letko were eerily quiet. I knew that there was some inflammation at the moment, but had no idea why they were so solemn. Dr. Foster closed the door, and looked at Dr. Letko. What was going on? Dr. Foster sat down in the chair opposite me, and looked me in the eye. ûDo you know what condition your iritis is in? More specifically, do you know what damage glaucoma can do?” the man asked in a very serious tone.

A conversation with my original ophthalmologist ran through my head about the possibility of optic nerve damage due to glaucoma. I replied, ûThe pressure can cause damage to the optic nerve.”

ûCAN cause damage?!”

Suddenly, my life changed. I crashed, all strength left in my body was immediately drained, and every muscle in my body became limp. As I filled in the blanks and the story unfolded before me, I remember thinking, ûWow! It did happen to me.” The high pressures that I had experienced the previous year had robbed me of partial vision that would never return. That dark spot would be with me for the rest of my life. Dr. Foster continued, ûThe loss of vision will only continue to progress with each subsequent flare up and high glaucoma pressure.”

Currently I cannot say that I am cured, however after approximately one year of treatment from Dr. Foster I feel much more confidant that remission is a definite possibility. The best news is the relatively small amount of medication I am currently taking. My stomach is very happy with the 5 mg of prednisone that I take daily, and it does not miss the naproxyn at all. These last few months adjusting to a new school, coast, life, and acceptance of the severity of my illness have been very difficult. What has served as a source of strength is the acceptance of my disease and learning about it from others who have it. I have a disease that is very rare and could possibly lead to blindness, but today I have most of my sight and can function at a relatively normal level. I realize that I could be struggling with this for the rest of my life, but I am strong enough to get through it. Had I not accidentally fallen into Dr. FosterÃs care, I think the sight that I do have would not be present.

Learning to live with iritis has been very challenging and trying. Being 3,000 miles away from my family and friends has made the experience that much more taxing. However, the care and expertise of Dr. Foster has served as a crutch in helping me through my trials. Secondly, the iritis support group has served as a gold mine in information and has been invaluable in simply being there to share the experiences of iritis.


How often should my child get an eye examination if they have JRA?

Juvenile Rheumatoid Arthritis and Uveitis

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     Uveitis and Steroid-Sparing Therapy

    Presented by C. Stephen Foster, MD, FACS, FACR

    Audio-Digest Ophthalmology Volume 56, Issue 15

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