Mike,
Thanks for your reply and info from my post in the introduce yourself section. I am seeing 2 retina specialists based out of Lexington, but with a satellite office in Ashland. They both specialize in the treatment of iritis and uveitis. My rheumatologist, I am told, is one of the best on the east coast and has treated both my grandfather and is currently treating my father, so he knows the family history. He is also in Ashland. I am unsure if it's ok to post their names here. You can let me know or I could email you if that's better. I am currently satisfied with the treatment AFTER the iritis manifests itself, it's just the retina team holds the rheumatologist accountable to treat and prevent the disease since it's an auto-immune disorder. They just treat the symptoms after they arise-similar to a fire dept putting out fires. My rheumatologist guarantees he can find and treat the disease, but he told me it can take up to 2 years though to figure it out. Right now, he is just manipulating the dose of methatrexate to try to get it adjusted right to prevent the flare ups. I go back every 6 weeks for blood work and med changes. This is just so frustrating because it's a long drawn out process. He is pushing the Remicaide IV treatments, which is what my dad takes. I am unsure about needing those at such a young age. They are incredibly expensive and it will be a fight with my insurance company to get them to cover any part of them. I have no problem driving to Columbus to start with a new doc if need be. I just want this fixed before it's too late.
On a side note, all 12 of my flare ups have been in my left eye. My retina docs tell me I have not suffered any permanent damage...yet. I just can't help but think how much more steroids I can put in my eye before I do. I know the oral preds are bad for me also. Also, my retina docs have discussed the injection, but I have never needed it since the Durezol and oral pred have always worked great. From the time the iritis starts, I can be off all meds and have my eyes quite within 2-2 1/2 weeks. It just seems as though my last 2 flare ups(esp. this one) have been far more intense. They have went 3-4 weeks before my eyes go quiet and I taper off the meds. I go back to the retina doc during each flare up and my pressures have always been good. This flare up is the first time I have noticed any pain. I have never needed the atropine before, although I may have to take some this time. My eye is sensitive to touch and light, but that has not been the case with the other flare ups. As far as joint pain, I have a little knee pain, but VERY slight. It seems to be better since I started the MTX. No other symptoms have come about yet.
I have an appt with my rheumatologist in 2 weeks. I am trying to get in to the retina doc tomorrow, but will have to wait and see if they can work me in. Thanks again.
Jason
Continued post
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Mike Bartolatz
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Re: Continued post
Jason,
I am saddened by your eye problems. your rheumatologist is correct in treating this aggressively with Methotrexate but the goal is 'off all steroids without inflammation' and you haven't gotten there with methotrexate alone so the next step on a stepladder approach to treatment is to add a TNF A blocking drug such as Remicade which has the best results for uveitis according to Dr Foster at Harvard, the best ocular immunologist in the World. you would continue the MTX however as it is needed to stop the production of the white blood cells causing the problem. you stay on the combination of drugs for two years to accomplish this once you are off all steroids without inflammation.
the use of steroids is cumulative and can lead to cataracts and sometimes glaucoma (me). the injection isn't into the eye but outside the eye. they sound worse than they are.
Dr Klisovic is trained to diagnose and treat uveitis and underlying causes using methotrexate, remicade etc
your doctors will have to write letters to the insurance company to get remicade approved. Durezol is the only drug actually approved for uveitis treatment BTW. even corticosteroids are used off label and insurance companies allow them to be used because uveitis is a RARE disease. did your rheumatologist try using the NSAID Celebrex along with the MTX?
hopefully you will NEVER end up with one of the seronegative arthropathies. many individuals with HLA B27 only get uveitis.
wish you the best,
mike
I am saddened by your eye problems. your rheumatologist is correct in treating this aggressively with Methotrexate but the goal is 'off all steroids without inflammation' and you haven't gotten there with methotrexate alone so the next step on a stepladder approach to treatment is to add a TNF A blocking drug such as Remicade which has the best results for uveitis according to Dr Foster at Harvard, the best ocular immunologist in the World. you would continue the MTX however as it is needed to stop the production of the white blood cells causing the problem. you stay on the combination of drugs for two years to accomplish this once you are off all steroids without inflammation.
the use of steroids is cumulative and can lead to cataracts and sometimes glaucoma (me). the injection isn't into the eye but outside the eye. they sound worse than they are.
Dr Klisovic is trained to diagnose and treat uveitis and underlying causes using methotrexate, remicade etc
your doctors will have to write letters to the insurance company to get remicade approved. Durezol is the only drug actually approved for uveitis treatment BTW. even corticosteroids are used off label and insurance companies allow them to be used because uveitis is a RARE disease. did your rheumatologist try using the NSAID Celebrex along with the MTX?
hopefully you will NEVER end up with one of the seronegative arthropathies. many individuals with HLA B27 only get uveitis.
wish you the best,
mike
Mike Bartolatz
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