Lydia’s Story

Even with the blinds drawn and the lights out, the bedroom in the ground level of my Mom’s house was too bright. I seem to have this unfortunate habit of getting quite ill on a holiday. It was Christmas Day 2003, and my right eye hurt badly. The white of my eye seemed a bit red when I had gone to sleep the evening before, and it had really hurt to watch TV in the dark. When I got up in the morning, I put a cold, wet, dark washcloth over my eye and, guided by my good eye, stumbled my way up the stairs. Fred, my stepfather, made me a cup of coffee as I sat down at my mom’s computer to search for information about treatments for conjunctivitis.

Because I had had conjunctivitis several times before, I was convinced that I was just having a bad case of pink eye. A couple of days before I traveled to Minnesota to visit my mom and stepfather, I noticed that my eye was feeling strange, and so I had been blasting it with homeopathic eye drops and Visine. However, the drops did not seem to be having any effect at all and I felt like my eye was smoldering. I typed “conjunctivitis” into the Medline Plus search engine and after studying the different flavors of this ailment, decided that I must be suffering from viral conjunctivitis. The symptoms all seemed to align: redness of the eye, watery discharge, extreme sensitivity to light, and failure to respond to the usual medications for bacterial conjunctivitis. Convinced that this would just have to run its course, I decided that I would get through this without medical help.

When I returned to Boston at the end of the month, my eye had not improved. I went to the Emergency Department at Mass General, where I found the wait on the day before New Year’s Eve was two hours. When the triage nurse learned that my complaint was related to my eye, she suggested that I try my luck next door at MEEI. I had no idea that a clinic like that would have an Emergency Department…

I talked the resident on duty at the ER into diagnosing me with viral conjunctivitis. He did not really question me, and after a very quick exam, prescribed a ten-day regimen of combination steroid/antibiotic eye drops. My eye felt better within hours, and by the end of the tenth day, I felt back to my old self. I stopped the drops and within two days, my eye was red and super sensitive to light again! I dragged myself back to the ER, saw the same resident, who this time had a theory that perhaps I had blepharitis, and advised me to go back on the drops four times a day, this time adding a nightly dose of antibiotic ointment and a morning routine of soaking my eyelashes in hot soapy water for ten minutes.
My condition improved, but this time, within 12 hours of discontinuing the drops, my eye got bright red. A friend at work told me early in the day that it looked like my eye was kind of pink, and when I stopped by to say good night to her around 6, she told me that my eye was very red. As I drove home that evening (it was February, so it was dark very early), the brightness from oncoming cars’ headlights stung my eye so badly that I felt like pulling over and crying. I decided to make a third trip to the ER at MEEI that evening, and this time saw a different resident (Dr. Laura Green) who examined me for nearly 20 minutes. I certainly had given up on trying diagnosing myself. She told me that I had iritis, and explained that the colored part of my eye was inflamed. I had no idea that this was even physically possible…

Dr. Green then talked to me for the next ten minutes, interviewing me about whether I or anyone in my family had back trouble, joint pain, or an irritable bowel. She said she did not want to scare me, but that sometimes iritis could be associated with diseases like lupus, arthritis, or ankylosing spondylitis. I had at least heard of these diseases, but had never had any reason to suspect that I might have them. She also told me that about half the time, no other underlying disease is ever detected in people that have iritis. Naively, I left the ER that night–armed with pred forte and dilating drops (which I was supposed to take every 90 minutes!)–thinking that this new course of treatment would be the one that would bring these trips to MEEI to an end.

About two weeks later, I was back at the ER with the same complaints. This time Dr. Green thought we should try tapering off the steroid drops more slowly. So, we tried that, and again within days of stopping the steroid drops, I was back at the ER. This time, the director of the ER (Dr. Matthew Gardiner) suggested that I should see a specialist (I cannot remember the doctor’s name, but it was not Dr. Foster) and helped me make an appointment six weeks from then, in mid-March. My eye, however, decided that it could not wait that long, and it flared up again after stopping the pred forte. I called MEEI again and this time made an appointment to see Dr. Foster on February 19, 2004.

Dr. Foster advised that I take the pred forte drops every two hours for one week, and then every three hours for another week and then come back to see him. He also ordered extensive blood work to discover whether my problem had an underlying cause. I choked back tears when he told me he wanted me to “donate” some blood, and though I cried from fear for almost an hour on the eighth floor at MEEI, I did let Eddie take my blood. To calm me down after we were done, when I told Eddie I liked a tattoo of his, he innocently asked me if I had any tattoos… I asked him if he thought that was very likely given how I had just cried like a baby at having my blood taken!

I followed Dr. Foster’s orders, and my eye improved (by the way, I have only ever had uveitis in my right eye; my left eye continues to enjoy the 20/20 vision it has always had). I tapered the drops every week and came back to see him a couple of weeks later. My inflammation decreased (I got very familiar with the cell counts that the fellows would indicate on my charts and was so pleased to watch the count dwindle from a high of 4 to >1) and all seemed well. We reviewed the results of the blood work, and Dr. Foster told me I had no “nameable” disease.

The inflammation was under control, however, my eye would not tolerate being off the steroids. I could go for only three days at a time with no drops before I would have a flare-up. All through that spring and summer, I went through a routine of flare-ups, having my vision deteriorate, going to see Dr. Foster, being told that I had to go on the drops every hour, having my vision improve, coming back for follow-ups, tapering the drops, and then having flare-ups again. Twice he suggested that I get an injection under my eye and twice, despite being terrified of needles, I went through with the injections.

Also during this time, I discovered that I was a “steroid responder,” meaning that the pressure in my eye became elevated in response to the pred forte. I have been on a couple of different drops (timolol and alphagan) to control the pressure. Adding insult to injury, I have also been slowly growing a cataract, which has decreased the quality of my vision.
In spite of these treatments, Dr. Foster was unsatisfied with my lack of progress, and last October he suggested that I try immunomodulatory therapy. The drug he wanted me to use was methotrexate. My stepfather had been on methotrexate for ten years, which had done a good job controlling his psoriatic arthritis. At one point in the late spring, I had read the uveitis newsletter and saw a story about patients who were taking methotrexate for juvenile idiopathic arthritis-linked uveitis. I had mentioned this to Fred and he was very concerned about this drug, as he knew it had some scary side effects, especially for women of childbearing age. So, when Dr. Foster suggested that I take methotrexate, I was very apprehensive. I told him to write me a prescription, but that I was not sure I would take it immediately. I wanted some time to think about whether I wanted to do this. He told me that the drug was well tolerated, and that the alternative (gradual, but most likely certain, deterioration of my vision) was worse.

The next day at work, I researched everything I could find about methotrexate through Medline and the uveitis.org site. I read several journal articles, and was pleased to see that so many of them listed Dr. Foster as the primary author. Going to my first uveitis support group meeting in November 2004 and hearing about other peoples’ experiences with the drug caused me to feel that I made the right decision to take methotrexate. I started to feel that maybe this medication would not actually kill me… (I was concerned about not being able to be pregnant while on the drug, but at this point in my life, I am not seriously thinking about having a baby. However, I felt a bit strange knowing that being pregnant would not be an option at all for at least the next two years).

I started the methotrexate slowly, taking only two pills a week. I feared that I would lose my hair or become horribly fatigued; however, I felt good, and the side effects that I was so worried about did not materialize. Nevertheless, the doses I took didn’t seem to be controlling the inflammation adequately, and so for several months I after rehashed the routine I had already been through in the spring and fall of 2004, this time increasing the dose of methotrexate every other month. At seven pills a week, I did start to experience some unpleasant side effects: canker sores and big pieces of skin that detached from the inside of my mouth. Dr. Foster decided that at I had reached my limit: the methotrexate was not cutting it. He wanted to try a different approach. This was at the end of August 2005.
The next suggestion was to try CellCept. I had heard from several people at the support group meeting that they had had some luck with this drug, so I felt good about trying something different. The dosing routine was kind of a pain, since CellCept must be taken twice a day on an empty stomach (I also have been taking Voltaren since May 2004, which has to be taken twice a day with food). We ramped up my dosage over a couple of weeks, and I felt fine on it. However, the two times I tried to discontinue the pred forte drops on CellCept (after very slow tapers), I had flare-ups. I last saw Dr. Foster on October 21, and he declared that the CellCept was a failure for me. He advised me to stop taking it and to take a break from the immunosuppressants (I also had had trouble getting over a cold that had held on for three weeks).

When I see him this Tuesday, Dr. Foster and I will discuss what the next steps are. I am scared that we may have to try more aggressive and radical treatments (I am terrified that he may suggest infusions). I am trying to be patient through this process and not get discouraged. I am optimistic that we will find an immunosuppressant that controls the inflammation. I just wish it was not taking so long to get there…

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