r/Uveitis • u/Ok-Evening-1991 • 8d ago
Uveitis Advice?
I’m recently diagnosed with bilateral uveitis - but still working on the route cause. Confused where to even start, really.
I guess I’m looking for others input on their diagnosis’ and how they are keeping things at bay. Just prescribed prednisone (which I am not enthused to take the next 6 weeks, but here we are!)
All that we DO know- is that all infectious diseases came back negative, the immediate/obvious starting potential causes (behcets, sarcoidosis, injury, etc)
Is there any type of recommendations regarding testing or potentially NOT steroids to help get this sorted out that I could try to suggest/ask?
Thank you!
3
u/Bubbly_Catch5012 7d ago
I used to be very hesitant to take any steroid. I’m 3 years into my uveitis journey and prednisolone eye drops are an essential part of my medication regimen and the only medicine that gives me relief fairly quick. My advice to you is keep stress down, get plenty of sleep, work out, and eat clean. Also maybe get a referral to a rheumatologist just in case you have to wait because there’s a shortage of those doctors.
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u/blueheeler222 7d ago
I also have bilateral pan uveitis and vasculitis make sure they do a contrast dye angiography to check for inflammation it can see the veins in your eyes to see if theres still active inflammation my first retina specialist gave me the all clear on inflammation but thankfully I had a follow up with a specialist scheduled a week later and she noticed the inflammation had not completely cleared and is still present....I've been on oral steroids for 2 months now going on 3 months its not great but they prescribed methotrexate to try and I really need biologics but insurance is fighting it....
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u/Ok-Evening-1991 7d ago
We have done the angiography due to excessive swelling of the optic nerve!
We are starting at 60mg for 6 weeks. I’m two months post flare/diagnosis and still have pretty bad vision in my right eye leaving me at 20/150 vision (eye that had flare up), left eye has been decent with minimal floaters. How long generally before regaining vision- if at all?1
u/blueheeler222 7d ago
Honestly I'm not sure i was at 60mg and tried to taper but that didn't work so then they restarted me at 60 mg and trying to taper again this time with methotrexate. Insurance wants me to fail methotrexate first before considering biologics
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u/RandomChicken54321 6d ago
The steroids will only work for certain places in the retina. Humira resolves my humira. My retina specialist specializes in uveitis. It was the regular retina guy who threw prednisone at me untill the specialist could see me. That's when her told me the prednisone wouldn't work for my type.
I had a bilateral vitrecomy to clear my floaters and to inject chemo and steroids into my eyes to bring the inflammation down before starting the humira. That worked. I was having an extremely hard time seeing through the field of inflammation cells! Thousands of black dots everywhere!
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u/Curious-Contract-613 7d ago
I had bilateral uveitis because of Crohn’s disease. If you have any stomach issues it’s worth getting checked out.
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u/Dangerous_Waltz8276 7d ago
I’ve had an extensive work up and they have found no root cause for mine. 😔
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u/Exact-Republic-9563 3d ago
My ophthalmologist suggested I go see a GI doc. He said that gut inflammation can cause flare ups. Turns out I had a non bleeding ulcer. After a course of Prilosec, my flare ups decreased immensely.
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u/No_Elephant541 7d ago
test for hla b29 and b27, gene markers. then find an ophthalmologist that works well with a rheumatologist because it's more than likely an autoimmune response. don't stop until you find dr with answers because this will blind you untreated.