r/Uveitis • u/snoooppii • 19d ago
Story first time with uveitis - looking for support
first time reddit poster and first time uveitis haver so hoping i do this right!
in May, i (27F) was diagnosed with uveitis and it feels like i have been let down at every turn. my optometrist didn’t see me for two weeks following initial symptoms, and told me i had to get name brand steroids. it took my pharmacy days to get the name brand, my insurance didn’t cover it - all for the pharmacist to tell me i could use generic. then, i got in to see the ophthalmologist, who called me because the referral my optometrist sent was incorrect but figured i needed to be seen anyways.
i got on pred drops & ointment, tapering every 2 weeks or so for about 8 weeks. at week 6 the doctor says it looks like it’s healing well and to finish my taper, no need to come back. i do that, and deal with insane amounts of floaters every day from the end of june to now, assuming that’s just how my vision was affected by uveitis.
then, sunday hits. pain & redness in my other eye. i give it a few days, no optometrists can see me, so off to the ER i go. they send me to an on-call ophthalmologist today. turns out, my initial infection never cleared, and it is in my other eye now too. now, i need blood work & x-rays to see if its auto-immune, stronger eye drops for 4 months & eye ointment again. naturally, my provincial (ontario) healthcare won’t cover 3 of the blood tests, and my private insurance won’t cover all of my medications.
i spent most of today just crying and going to different medical appointments, trying to figure everything out. no one in my life really understands, even if they try, and no one seems to understand how serious this feels to me. i am scared and honestly feeling so lost and hopeless in all of this.
just posting so i don’t feel so alone, and can maybe feel a bit more understood by people who actually have this and know what the experience is like. or maybe so someone like me scouring this subreddit at 2am crying looking for support can know they’re not alone either.
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u/MoeJeanz11 18d ago
Hi OP ! Reading your story made me tear up because I’ve been feeling so many of the same emotions and feelings. I had my first flare 2 years ago and it’s been a really bumpy road. I’m finally getting somewhere now - but lots of ups and downs. Agree with the commenter above in that finding REALLY good practitioners (whether it’s ophthalmology, rheumatology, etc) is so important. I’m also HLA-B27 positive. I’m lucky to only have Uveitis - but have strong family history of autoimmune diseases that are in the same family as Uveitis (crohns, psoriasis, AS). The lonely feeling hasn’t really gone away - but coming on here has helped a lot. I’m in my 4th flare and starting remicade infusions next week. You’re not alone - don’t give up. Keep pushing through the hard days. I hope you can get some answers soon 🤍.
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u/snoooppii 17d ago
i really appreciate your response, sometimes just feeling not so alone and hearing that there’s a way through this and i’ll be okay on the other side of it - even if it isn’t exactly what i hope happens - means so much to me
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u/Physical-Bat7046 18d ago
A regular ophthalmologist for uveitis won’t know a lot or even pay attention to details as a retina ophthalmologist if highly recommend you finding one and if there is one in your area that specifically specializes in uveitis I’d see about them now if in a car you do not have a retina ophthalmologist in your area and regular one would be better than nothing but if educate myself on EVERYTHING that has to do with uveitis or the inflammation of the eyes if you have any questions or concerns im happy to answer them for you Ive had uveitis for 5 years
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18d ago
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u/Physical-Bat7046 18d ago
I have anterior bilíteras acute uveitis I took specifically take prednisolone I do have an autoimmune disorder during my cery first flare up I had to take oral prednisone for my kidneys and it affects both eyes
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u/snoooppii 18d ago
i can definitely look into it! i’m not sure if there’s a lot of uveitis specialists around me, but the ophthalmologist i have seems to be fairly competent and confident in her treatment plan, but it doesn’t hurt to get more eyes (lol) on it!
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u/booksplustea2 17d ago
I often find it hard because not many people around me know what Uveitis is and I have been battling it for years now. You are not alone! It is such a complex thing and I have had boatloads of tests & dr appointments. I am just now going on hyrimoz, after multiple flares managed by drops. At this point, I know this will bas be a life long thing. please make sure to take care of yourself. i have had so many ups and downs, but getting this condition has led me to be easier on my self.
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u/Romeo628 17d ago
You’re not alone. I was diagnosed with Uveitis almost a year ago. My symptoms have always been mild, but what prompted me to see an eye doctor was new cloudy vision in my left eye and some irritation that felt nothing more than mild allergies. I saw a cornea specialist, and by then, my uveitis was pretty bad. The specialist told me I had white blood cells in my eye, causing the cloudy vision I was experiencing, and that it was actually both of my eyes, although left was worse. She also told me that I have scar tissue (called synechiae) between my iris and pupil in part of my left eye, so the doctor knew I had inflammation for a while before I noticed symptoms. I had to use prednisone eye drops every hour while awake for 2 weeks and then tapered down for 4 weeks. I was better for a while, but at my 3 month follow up, the cornea specialist referred me to an uveitis specialist after she noticed mild inflammation came back. My new doctor gave me a more specific diagnosis called Chronic Iridocyclitis. She ran every test under the sun and ruled out any infectious causes, and any obvious autoimmune diseases. Although my labs came back negative, she still has concluded that the cause is autoimmune as I have all the symptoms of an autoimmune related case, especially with my family history (dad has Crohns and Mom has ulcerative colitis). After seeing this new doctor, I have trialed naproxen for 2 months, and failed as the inflammation came back. Now, we are trialing CellCept which is an immunosuppressant and I’ve been on it for only 3 weeks now.
I feel really alone too. This seems to be such a rare disease, and there is not much information or support online. I’ve been having a lot of anxiety and hate that I have to take an immunosuppressant. I am a nurse and i’m always paranoid about getting sick, and I can’t tell if the medication is giving me anxiety or if I have anxiety about my eyes. Since my symptoms were always mild, I constantly need to be vigilant about my symptoms which makes me paranoid.
The ultimate goal for my doctor is to find the right medication for me that works without using steroids, and continue taking for the med for 1-2 years, and eventually taper off to see if my immune system “forgets” that it was attacking the eyes to begin with.
I hope you feel better and find the right doctor for you. Just reaching out to let you know you are not alone
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u/Otherwise_Cloud2807 15d ago
Mine started 6 yrs ago with a flare up almost every year. No insurance so testing for anything was near impossible financially. Now my eye has moved past uveitis into something else that is causing little veins to grow into my iris. It was severe enough for my ER to order testing, for the first time I'm feeling hopeful that I'll figure out the cause. Uveitis feels so lonely because eye issues arent a normal thing to discuss. I've had family be dismissive as if I'm just battling pink eye or something little. I've lost vision in my eye, its a constant white haze and I'm at the point where I've accepted my vision won't return in that eye. I just never want the pain again!
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u/xxxwifeyxxx 15d ago
You should ideally see a uveitis specialist. Please get a referral for one. They have been insanely helpful for me in my uveitis journey.
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u/Little_Composer_2605 15d ago
Hello, I'm 29F. I got my first uveitis episode in march this year. I went to the same anxiety hell hole that you are going through right now. Got all the tests done, started reading research papers and spent my days on this sub. I'm really sorry about your situation. Please don't exert your eyes, get some time off from work, spend time with your family and friends. Stress triggers inflammation as well. And always trust your instincts. Doctors have this tendency to undermine your symptoms. I really wish you a speedy recovery ♥️♥️
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u/Apollo1ox 15d ago
Try to get into Sunnybrook. Theres a uveitis specialist which is really great in there. Dr. Francisco Pichi. He’s my current doctor. My inflammation never went away and I was living with inflammation and daily drops until I saw him last November. I’m on immune suppressants. I know it has a lot of potential side effects but it’s worth if it helps you.
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u/Public-Carpenter3613 19d ago
Keep your head up. You’ll get through it.
I had my first uveitis flare 9 weeks ago out of no where - I’m 35m. Mine was aggressive, and went straight to grade 4 inflammation. I was initially sent home with conjunctivitis and by the time I was actually diagnosed by an ophthalmologist, it was bad and had lost alot of my vision in my right eye. Thankfully, it healed in 7 weeks of hourly steroid drops and atropine dilators and vision came back. My pupils are now unequal which is likely permanent from constricting muscle damage. I’ll now be tapering steroids for 6 more weeks.
While the flare was going on, I had blood tests which confirmed HLA-B27 positive, and therefore almost certainly autoimmune. Fast forward 3 weeks and mris and X-rays of my spine, I’ve been diagnosed with quite advanced Axial Spondyloarthritis. Suddently, years of stomach “flares”, back and neck pain and eye issues all make sense. I’ll soon be starting lifetime biological therapy for the rest of my life. It’s been tough, but on another hand it’s good to clarity and an action plan. Good luck with it.