17 years of chronic bilateral uveitis

[bluemoojie]

Hi there,
My name is Debbie and I am 48 years old. My journey with uveitis began as bilateral iritis 17 years ago which seemed to come right out of the blue. Regular doc thought I was crazy, but opthamologist didn't. I have a theory about the trigger, but no proof.

Over the 17 years I have progressed to chronic bilateral uveitis with very few quiet periods. I could write a book with the entire story so will settle for where I am now. I live in Oregon and have been to the uveitis clinic at OHSU on several occasions to consult with Dr Rosebaum. I am Hla B27+. His recommendation was to go on methotrexate. I did not want to, but finally resolved that I had to try something. So I went on it for a year. It didn't seem to do anything. The only thing that seemed to work were the cortocosteroid injections. At one point I had an interocular injection,( a few years earlier), I don't know what it was called specifically, but a deeper shot, and experienced a significant loss of vision in my left eye afterward.

I hated how I felt on the methotrexate and just wanted to feel normal. So, I quit...everything. Denial I guess you could say. I tried nutritional ideas, herbs, anything that was natural. I ended up with retinas that were so inflamed it has taken a year to try and calm them down. Back with my trusted retinologist who came out of retirement, thank God.

Over this past year, I have been with a rheumatologist also who has supervised a methotrexate regimen. I still don't feel that it has been successful at all, and my retina doc has been frustrated with it's lack of results also. The first step when I came back into treatment was the methotrexate oral pills, dose gradually increased. The second was corticosteroid injections, both eyes. Those improved vision, but retinas were still quite swollen. Continued to up the methotrexate dosage and went to injections with it. Started with 6cc and now up to 9cc. Still didn't see much response to the methotrexate. So, did an Ozurdex implant in my left eye. Fabulous results with vision and retina swelling went down within a week. Then we decided to try the Ozurdex implant with the right eye. The results were great the first week, but at the one month checkup my vision had decreased. However, at this appointment I also had slight swelling of my eyelids and a general puffiness of my face, as well as pain in both my feet, which I describe as tendonitis. It effects many parts of my feet including my ankles. In addition I had, and have had a rash (for many years) across my face, which most docs have said is rosacea. So, after a visit to my rheum doc last week and CRP of 14.7, he ordered a new slew of tests to rule out lupus, hopefully once and for all.

I have another consult with OHSU at the end of September. I know this site is not about feet, but my feet don't seem to get better with rest and they don't seem to get worse with activity. They are quite painful. It was both feet effected a couple of weeks ago, right now it is only my right foot. Also, I have had foot pain since I was in my early 20's, but have been more bothered with it the past few years as a chronic problem.

So, this is the "short" version.

Debbie

[Mike Bartolatz]

Welcome to the group! anyone suggest adding another class of drug to the regimen such as REMICADE which works very well in HLA B27 related uveitis? taken along with the MTX to get best results.
foot pain is linked to reactive arthritis along with the Achilles tendinitis also linked to HLA B27. if NSAIDS don't help, you might ask for Neurontin used to treat neurological pain. It has helped to ease my foot pain. I also take Tramadol along with a muscle relaxer, flexeril. my feet have bothered me since High School (back in the dark ages . I am diabetic and have neuropathy for which the Neurontin was prescribed so I get a 2fer if you know what I mean.

do you also have severe dry eyes? this can occur as well. Restasis eyedrops can help. Dry mouth also occurs and Salagan can be used to help with it. I have punctal plugs implanted in the drains for the eye to help to keep moisture on the surface of the eyes longer before evaporating. I also use lubricating eyedrops.

join us in the general discussion forum, click on BOARD INDEX at the top of the page and then select the forum you wish to use.

take care,
Mike