Hey guys, my name is michelle. I am 22 and i have presistant low grade iritis. It spikes to chronic irits from time to time. I have been taking a drug called Relafin for a few months now, and that seemed to help most of my symptoms except the light sensitivity. And about two weeks ago i started going down hill again, and experiancing lots of pain and really bad headaches. I was wondering if anyone had any reccommendations for me on the next step. I am HLA-B27 positive, with a history of Juvenile RA. My father has psotaric arthritis and Ank... Spondalitis. My eye doctor has me on pred forte when the condition worsen, and my normal physician has me on relafin. i am in contact with a rheumatologist about the iritis and hla-b27 link, but just wanted to talk to others that understood what i was going through. it is so different day to day and that makes it hard for me to deal with, and others to understand.
thanks
Hi
Moderators: Mike Bartolatz, kwork
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Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Hi Michelle,
have you been given immunomodulating drugs like Methotrexate or Remicade in an attempt to break this recurrent and then Chronic uveitis related to your genetics?
boy did you get a boat load of ones with the HLA B27, along with the psoriatic arthritis and ankylosing spondylitis. I am very concerned about your eyes as JRA related uveitis alone is difficult to treat without immunomodulatory drugs. It would benefit you to see a true specialist if at all possible, one with allot of experience as if this continues to be difficult to control for you damage to your eyes will occur.
there is a support group in Boston affiliated with the ocular immunology and uveitis foundation. some of the kids there are undergoing MTX and Remicade treatment for their JRA related uveitis. you can talk to parents there at the parent forum.
additionally, there is a lady about 30 who has JRA related uveitis. she has fought an uphill battle for many years and it has taken about 5 years to get her eyes quiet and off all steroids using a combination of MTX and Remicade.
where do you live? I would like to suggest an ocular immunologist for a consultation. you most likely will have to travel to see one of these rare specialsits but it will save your eyes and control you JRA. the support group is at http://www.uosg.org
I Moderate the site as well as this one.
wish you the very best,
Mike@parsplanitis.org
have you been given immunomodulating drugs like Methotrexate or Remicade in an attempt to break this recurrent and then Chronic uveitis related to your genetics?
boy did you get a boat load of ones with the HLA B27, along with the psoriatic arthritis and ankylosing spondylitis. I am very concerned about your eyes as JRA related uveitis alone is difficult to treat without immunomodulatory drugs. It would benefit you to see a true specialist if at all possible, one with allot of experience as if this continues to be difficult to control for you damage to your eyes will occur.
there is a support group in Boston affiliated with the ocular immunology and uveitis foundation. some of the kids there are undergoing MTX and Remicade treatment for their JRA related uveitis. you can talk to parents there at the parent forum.
additionally, there is a lady about 30 who has JRA related uveitis. she has fought an uphill battle for many years and it has taken about 5 years to get her eyes quiet and off all steroids using a combination of MTX and Remicade.
where do you live? I would like to suggest an ocular immunologist for a consultation. you most likely will have to travel to see one of these rare specialsits but it will save your eyes and control you JRA. the support group is at http://www.uosg.org
I Moderate the site as well as this one.
wish you the very best,
Mike@parsplanitis.org
Mike Bartolatz
Moderator
Moderator
Hi, when were you first diagnosed with uveitis/JRA? I was diagnosed at aghe 2 with JRA and age 4 with iritis. I had low grade inflammation throughout high school and college that was slowly taking away my vision, by just being treated with steroids. I finally found a specialist who has made a world of difference. I am off all steroids, and am bing treated very successfully with Remicade. I was on methotrexate too, until January, but i want to get pregnant, so I weaned off of it.
Please feel free to write me at jessrms[at] optonline[dot]net. Alswo, Mike gave some great suggestions above. there is a support group that you may want to join, Mike gave the link above.... Please insert the correct symbols into my address.... Write uveitis in the subject line....
Jess
Please feel free to write me at jessrms[at] optonline[dot]net. Alswo, Mike gave some great suggestions above. there is a support group that you may want to join, Mike gave the link above.... Please insert the correct symbols into my address.... Write uveitis in the subject line....
Jess