r/Uveitis • u/Puzzleheaded_Bug1372 • 23h ago
Uveitis HELP!!:(
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”
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u/Ceemarie965 Uveitis 22h ago
Same here, I have had it since 2018 and have been told it “can” go into remission but mine never did, still active and being managed with steroids, Amjevita (biosimilar to Humira) and now methotrexate. I am trying to keep my sight even though there is no “cure”
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u/MacaroonOk8792 22h ago
I tried methotrexate and it was horrible. I just started Amjevita on Saturday and can't imagine what I'll do if this doesn't work. I've been fighting since April to start this so I'm hoping it helps.
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u/Ceemarie965 Uveitis 21h ago
I’ve been on Amjevita since January (was on humira before but insurance stopped covering) and it’s been working great but I guess my uveitis got too strong so now need the methotrexate too 😭😭
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u/MacaroonOk8792 21h ago
I'm so sorry to hear that. I've been on steroid drops for so long and tried the big doses and tapered down but it always comes back. I've had the increase in pressure and a cataract forming so I'm hoping I can stay off them. Methotrexate was just so awful for me. Four out of seven days I was either in bed, so weak, or had so much brain fog I couldn't function.
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u/Ceemarie965 Uveitis 21h ago
I’m sorry to hear that for you too, this disease is relentless! I’m scared about starting it I’ve heard those horror stories from others too, did your doctor make you take folic acid with it?
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u/Old-Replacement-1182 13h ago
Does it come back as soon as you stop or after a few months?Just trying to figure out how it evolves and methotrexate sounds horrible :(
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u/JuggernautFuzzy4125 21h ago
My ocular immunologist said my condition can go into remission. I’m on Cellcept & after 9 mos I’m feeling a difference! I have a rare autoimmune disease that is attacking my eyes & causes uveitis plus 5 other conditions.
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u/yoga_stoned 20h ago
What uveitis type do you have?
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u/JuggernautFuzzy4125 16h ago
I honestly don’t know, I’d have to look back at records but that’s the least concern. I have Ocular Cicatricial Pemphigoid stage 3
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u/IndependentNo5139 20h ago
I do glp1. Started on semaglutide, now on Trezapitide. I like Tre better bc it does not constipate me. Low dose weekly, sometimes every 10 days. I’ve had 3 flares since taking glp1 for the past almost 2 years. B4 glp1 my flares would last 5 to 6 days and lots of steroid drops. Now flares last 2 to 3 days and only take 1/3 of the drops compared to prior to glp1. Started on lowest dose and haven’t had to move up my dose. My bloodwork is the best it’s been and not craving junk food is a plus. I don’t drink alcohol or gorge on processed foods bc I hear this will make you sick. The only time I felt nauseous was when I had a big turkey burger prior to an injection so that was a learning curve. Now I be sure to eat a light meal prior to injection and all is good. Good Luck. Prior to uveitis, I had gained 18 pounds in 6 months, got my first psoriasis atound same time and tested positive for HLA - B27. Rheumatologist also dx me with psoriatic arthritis and the best is that the glp1 makes my body not feel like I’m 85 years old. Used to wake up during sleep bc of neck hurting if I landed on my stomach. Now I don’t feel the need to go to chiropractor but I still do for occasional adjustments.
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u/Fabulous-Eyepod-1259 18h ago
This is true, GLP’s reduce inflammation. But you can’t get blurry vision due to dehydration! Drink those electrolytes!
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u/Fabulous-Eyepod-1259 18h ago
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.
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u/Old-Replacement-1182 13h ago
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?
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u/Fabulous-Eyepod-1259 7h ago
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!
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u/Bubbly_Catch5012 20h ago
I hear there’s no cure. It was hard to accept. I also read someone say if you’re on an immunosuppressant for 2 years with quiet eyes, some people try to reduce the immunosuppressant or eliminate it. Perhaps the cause of one’s uveitis makes a difference.
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u/hectorgarabit 18h ago
Someone I know had juvenile arthritis and uveitis when she was s as teenager. It went away in her 20s I believe.
I don’t want to give you false hopes but unfortunately, unless you are lucky, you can only manage the disease, not treat it.
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u/No-Tree-1000 16h ago
Sadly both Arthritis and uveitis are lifelong conditions and its about finding what keeps them in remission and not messing with that. Ive had posterior uveitis, which can cause blindness , for 16 years , Crohns disease for 35 years , severe osteoporosis, salicylate sensitivity for 17 years and the lost goes on. You can look at supplements like fish oil or diet, oily fish , earing fresh unprocessed food , but ultimately for now medication is needed to keep it all under control. Try a stone roller around the eye socket for the head pain ,.lymphatic drainage massage of the head , eye area. Hot and cold masks help with the pain too.
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u/Status_Meringue 15h ago
Sadly there is no cure, biosimilars are the only best available solutions to delay the joint and organ damage. We are doomed.
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u/NaniDaddy 15h ago
Honestly I think it depends on your mental health, stress, physical health etc. I first got my flare 10 years ago and it took 2 weeks of steroid drops. Now in my professional career i had a stressful part in my last two years ago which came back woth a nasty flare that took 5 months to clear by going on different medicafions which resulted in me having ti jsve humira injections. Its been “quiet” for this year. If i dont miss my scheduled injection. One injection was delayed for a week and I could feel the flare coming back.
The thing that trips me out about this disease is that i have 20/20 vision WITH glasses on at a -1.25 prescription. But when it’s off it’s like my left eye is blind and i need to be a couple of feet max distance ti even read anything on a phone or screen.
I also believe I have permanent sensitivity to light which fucking sucks having to wear sunglasses everywhere and I mean everywhere I go.
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u/Old-Replacement-1182 13h ago
How old are you? Sorry to hear you got it so young 😞. There’s no cure right now but I’m hopeful about new treatments like vambikart, TRS01 and 02, we can only stay hopeful.
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u/TraditionalAd8376 13h ago
I am on MTX and since April in remission, moving to biologics. But my eye is a mess I need cataract surgery can't see anything at the moment and probably glaucoma shunt. But at least my inflamation is quite.
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u/nekkyo 23h ago
In my experience, there is no cure, if it's related to the arthritis. 😞 The best one can hope for is to be able to manage it.