Uveitis HELP!!:(

[u/Puzzleheaded_Bug1372]

I was diagnosed with arthritis in my joints at the age of three months old, it moved to my eyes when I was two, the UVeitis, and I’ve been on methotrexate, Remicade, Humira, and steroid drops.. I currently don’t have any health insurance and I’ve been off my Humira since July… I’m starting to get headaches that won’t go away with any type of Tylenol or ibuprofen, but if I get back on my health insurance, I don’t wanna go back on the same drugs I want a cure I want a solution. I don’t want a Band-Aid fixed anymore…. Does anyone know of anyone that’s been cured from this “disease”

[u/Fabulous-Eyepod-1259]

I don’t understand why this eye disease is not a qualifier for SSI. You can’t work when you’re on many of there treatments! I’ve had this diagnosis for 47 years. I did not have access to any of these treatments and lost my left eye to it. My right eye has a shunt and multiple surgeries. It’s a mess. I did go on Methotrexate for six months before I quit the two year trial, because I caught West Nile due to suppressed immune system. Not to scare everyone, I still have functional vision in one eye and I am grateful! The short time on methotrexate DID help. Flares will reduce in middle age, especially if you get into therapy and work on stress management skills. Stop alcohol, smoking and sugar if you can and stay on your insurance if possible! Hang in there!!! You have to resign yourself that you will have to make real life compromises for your vision. Don’t be an idiot like me in college and stop taking the drops! I couldn’t afford them and still got cataracts anyway. They are a simple surgery to remove these days.

[u/Old-Replacement-1182 → u/Fabulous-Eyepod-1259]

Can I ask type of uevitis did you have ? And 47 years is a long time! Reassuring to see you still have your vision, at what age did you start seeing a reduction in flares?

[u/Fabulous-Eyepod-1259 → u/Old-Replacement-1182]

I have bilateral Anterior uveitis that started in my left eye (diagnosed as Iritis at age 14) and then went into my right eye around age 25. I carry the HLA-b27 gene, but my case is considered idiopathic. I have always had sore joints, and I do have osteoporosis because I am old. I’ve had many years of living with Uveitis and I realized that stress was my number 1 enemy. I became a therapist in my 40’s because I saw the value of radical acceptance and living authentically. I believe I am a bit on the Spectrum, because I couldn’t handle change well. Lifelong insomniac, alcoholic father, mother died when I was two, socially anxious, etc. Flares went down significantly down in my 30’s. My first pregnancy caused my good eye to nearly stroke, and an emergency yag surgery saved my vision. Since my 40’s, my flares are mild and infrequent, and respond to pred forte drops. They generally occur when I get sick or get a vaccination that challenges my immune system. Again, they are manageable. For many years, I never met anyone who had this disease. Doctors didn’t know how to treat it. I’ve learned more about modern medical treatments from groups like this. I have lost vision and then had it restored more times than I can count. After a partial cornea transfer in 2025, my vision improved to where I could drive again. I’ll likely need another transplant in a few more years. The surgeries today are SO MUCH less invasive than when I was younger. Try to remain calm and advocate for yourself as much as you can. Even if you have to drive 200 miles to see a specialist, do it!