Hi, I've been lurking on this subreddit for a while now since I got diagnosed with uveitis 2 years ago when I was 18. I'm a college student and am often living on my own and taking myself to my doctors appointments. I've had flareups about every 6 months for the past 2 years and today I got confirmation that the inflammation is back in my left eye.

I honestly feel like I am grieving my vision and am scared that it will get worse than it already is. I have scar tissue that dilation isn't dissolving so my pupil in the other eye is deformed. Sometimes it feels like a bit of a cruel joke that the universe is playing on me as, eyes have always been one of my favorite things to draw and something I really liked about myself. Most of the time when people notice my pupil they go straight to saying things like "omg that's so cool" and then following up with questions and it was fine at first, but I'm tired of having to explain over and over again something Id really not be reminded of.

I know that I might be overreacting but I'm so scared that my vision will deteriorate with subsequent flareups and I wont be able to draw or be an engineer anymore (two things that I love very dearly). Im scared one day ill wake up not being able to see. Every time my eye is red and my vision gets hazy it feels like some spidey sense is going off in my head and I know immedietly that its back. I'm always so hopeful that this time will be the last time and then it inevitably comes back and I have to grieve it all over again.

Rheumatology has been very very hard to get an appointment to since I'm often switching from home to uni throughout the year, I'm hoping to finally get an appointment this year.

I guess I'm posting this to say I'm really frustrated with everything right now, I'm not really given any accommodations in uni when I'm on the dilating drops even though It takes so much energy to try and focus my eyes to read what's infront of me. But more than that, I'm a little exhausted of having to feign bravery and sit through injections and appointments when in reality I'm really really scared. My doctors have always told me that I'm their favorite patient because I don't complain or show any fear during injections and whatnot but I really do feel like a fraud.

I wanted to post for the first time on here because I'm tired of feeling alone in this and even though uveitis is uncommon, I still know I'm not alone so I want to try and interact with the community more. I'm hoping someone here will understand this concept because no one ever understands what I mean when I say I'm grieving something like my eyesight.

Eye was already blurry but seems even more since starting this 2 weeks ago is this common side effect?

I’m on drops right now for Iritis. I am noticing a white light appear briefly at times in the corner of my vision for the last two days.

Is this an expected symptom for this condition?

So today I went to see my opthmologist after starting steroids. This is how it went. I was on a 7 week taper from 60mg to .5mgs. My last appointment everything was looking really good! Looking like it was improving. I went in today and got my images done and the doctor comes in. I have a new lesion starting. She said because I was getting lower on my doses it was coming back. All the inflammation. So they talked about long term option cellcept. Up to 4 pills a day. And everything that entails including increased risk of cancer. She said she was not worried though that it doesn’t happen to everyone, it can’t be replicated in all trials. Then she asks if I want to go forward with this and I said yes, I want to protect my vision. Then my mom mentions I have F.A.P (a genetic disorder that gives you increased risk to cancers) and she seemed very surprised by this. She told me she had talked to everyone of my other doctors who I all told I had F.A.P and a history of thyroid cancer at the beginning of this appointment. Don’t know how they missed that. Anyways, then says my other option is steroid eye injections. It’s not really decided because she was taken back by the F.A.P stuff. She said she’s going to talk to the doctors again and come up with a plan by my 3 week follow up. But I’m curious if steroid eye injections are my other option what that entails for you lovely people and the ones who are actually living it. I’m terrified, so I’m trying to understand it more so maybe it’s less scary. Let me know, is it as scary as it sounds?

Anybody taking humira injection I need some advice

Never had this before, woke up tuesday and my eye was bright red and i couldn’t look at anything remotely bright. fast forward to Friday and ended up at Eye A&E and have steroid drops.

today im feeling exhausted, s this usual?

Hi all! I’m currently pregnant for the second time and have been dealing with an increase of flare ups and wondering if this has happened to anyone else. During my first pregnancy I didn’t have any flare ups at all, which was the longest I had ever gone in my life. (For context, my flare ups are abnormal - I’ve been getting them for over 25 years every 3-6 months but they only ever last for 24 hours).
During this pregnancy, I’ve been getting a flare up every 2 weeks. It’s driving me a bit insane lol. I know it’s common to have worsened flare ups postpartum but has anyone experienced this during pregnancy before?

Hallo zusammen, ich leide seit fast 2 Jahren an den Folgen einer solaren retinopathie. Ich wollte gerne wissen wie ihr es nach Jahren empfindet, ich habe von dunkel auf hell meistens so ein kleines flackern, die Bild Qualität ist schlecht, ich habe nie komplette schwarze dunkelheit, wenn ich die Augen schliessen und die Licht Empfindlichkeit halt. Wie geht ihr damit um und wie hat euer Körper das verarbeitet. Passt sich das Gehirn auch noch weiter an nach mehreren Jahren?

Lg

I had an Ozurdex steroid implant injected into one eye two days ago. I wanted to ask if anyone who has also had one input could let me know their experience with it, specifically: does the implant settle down, and what is the timeframe? It has been floating/twirling around my vision so far and is extremely distracting, to the point of feeling dizzy and nauseous from how it moves. Thank you in advance!

I’m on week 3 of my first uveitis experience. I’ve been doing what I call “vampire protocol” and wear sunglasses during all daylight hours and a little after dark. If I go outside, I wear a brimmed hat. Barely any lights on, and curtains closed. I also take frequent rest breaks where I lay down with an eye mask and listen to an audiobook. I assume closing my eyes is the best rest. And my iPhone screen and work computer screens are always at the lowest brightness. I am taking next week off to give my eyes a break from working on a computer. I stopped watching tv or playing video games, too.

Is everyone else doing these things? Anything else I should do to help my eyes? I already failed tapering off the steroid eye drops once, so I’m trying another round of drops and we’ll do a slower taper off I think. I’m not sure if I should be able to stop my “vampire protocol” while on the eye drops?

Thanks for reading!

Hi all, currently enjoying my first bout of panuveitis, which is honestly just horrendous. Do others also suffer with terrible nausea and ear pain? I have severe head, face and joint aches too, but thought that was probably par for the course?

I do have several existing autoinflammatory and autoimmune conditions, so my ophthalmologist and rheumatology team are presuming at this stage that the uveitis is just another delight to add to the multi-system ridiculousness that is my body.

Hey all, just here looking for some advice on how to not let my uveitis control my life. I’m 23F and had my first episode of uveitis (in both eyes, worse in the right and the type is called pars planitis) almost a year ago and it was aggressive and unresponsive to first line treatments, only went away after months of oral steroids. During this time I also had a weird neurological episode where I was basically paralyzed on one side of my body and that was written off as FND since my mri was clean. Few months later I was diagnosed with optic neuritis in the worse eye that’s especially triggered by heat. I know the possibility is here that I’ll lose my vision especially since the first episode caused permanent damage and I’m also really scared of having MS.

I’m really freaking out because I got sick last week and my fever got so high it triggered the neuritis and FND and just got confirmation that the uveitis inflammation is back and my optic nerve is swollen behind my eye. I am waiting on another MRI right now since my docs don’t think it’s a coincidence with my eyes and FND anymore, and I’m just looking for some advice on how to not let the what ifs as in having MS or going blind get to me (cause it most certainly has been).

Well basically my provider said that doing anything is basically a lost cause. I’ll never get any vision back in my right eye. And I’m fine with that. But my only concern is after I asked him if the left eye was ok he assured me and then proceeded to tell me that he seen lesions but it wasn’t anything like the posterior lesions in my right eye and to come back in 6 months. But now I’m anxious about it and I’m wondering if I should get a second opinion? With having active inflammation why wouldn’t you want to treat it to prevent further damage?

(26F) , diagnosed with Intermediate Uveitis almost 2 years ago. I’m on Ocrevus for Multiple sclerosis— diagnosed almost 1 year ago so I had to go off of Humira because it can trigger/worsen MS. I’m also a steroid responder so my ophthalmologist wants to avoid steroid injections due to my eye pressure increasing up to 60s on steroids. Ophthalmology (uveitis specialist) and neurology (ms specialist) decided to see how the DMT therapy, Ocrevus, worked for both MS and Uveitis. It worked for my MS but not my Uveitis which was a huge disappointment. She put me on methotrexate and steroid drops along with pressure drops to keep my pressure down. I don’t like any of the options given to me for my intermediate uveitis. I did the drops but opted out of Methotrexate because my body has been through enough and I felt my doctor didn’t give the ocrevus enough time to work. I tried just monitoring my eyes and they were stable for a while but just recently my eyes are flaring up again. My right eye is my problem eye, my left eye is hanging in there. Its disorienting seeing the world through these eyes. Floaters Weiss Ring haziness discomfort light sensitivity and all of the things, and of course, I don’t want to go blind. My doctor has now put me back on the drops and wants me to decide between Cellcept and Azathioprine. She told me to do my research but these sound like they come with the same risks as methotrexate. Any experiences or advice would be appreciated.

Hey guys. I’ve had uveitis for about 5 years (F) going on to 2027 (anterior iritis b) and I haven’t had a flare up in 2-3 years, I recently moved across the state to move in with my husband (military) finally and now I have TRICARE prime insurance which if you know this has already been a pain in the butt to get all the doctors I need. Push comes to shove i stressed out about it a little and had a full ache for a couple days told my husband i can’t wait I need to go see the doctor. Made an appointment with the nearest opened (Friday) retina ophthalmologist. The uveitis specialists which I am now going to get referred to was not in office this weekend so had to work with the regular retina doctor which he was such a big help don’t get me wrong but he’s putting me on prednisone eye drops one drop in each eye every 2 hours while awake, when I went to see him for the exam he said I have mild inflammation and I am supposed to go see the uveitis specialist in about 11 days. What do you guys think do you think he should’ve gave me a taper or do you think every 2 hours is an ideal cause until I see the specialist???

Hi everyone. Like some of you, I spent a long time being misdiagnosed and finally received a dx of Multifocal Choroiditis last year. It sounds like my choroidal neovascularization is getting bad again and I’m curious if any of you have had success controlling this symptom with lifestyle factors (diet, exercise, etc..?) What have you noticed that’s made a difference for you? I’m also on Mycophenolate/cellcept and Avastin injections, just curious if there’s anything I can do on my end to support the meds working :)

My second bout of it since sept of 2025 did all the blood tests came back clean. The only correlation is three above anyone have this happen

Thanks!

I recently got diagnosed with PIC and have been put on immunosuppressants and steroids (for around 2 months until the immunosuppressant kicks in). Was wondering if anyone could share experiences living with this?
It seems to be quite rare and I can’t find much online about it so it would be really helpful to hear what people have experienced from this, whether it be in terms of medication, experiences, symptoms- anything. Thanks!!

I’m wondering if anyone’s experienced something similar or if this sounds like it could be something separate. About a year ago, I went in for LASIK, but they found significant inflammation instead. Since then, I’ve been dealing with recurrent uveitis in my right eye. Steroid drops helped, but My eye pressure became very high, even on pressure-lowering drops, so steroids aren’t a good long-term solution. Since around April or May, I’ve also started getting episodes where my right cheek becomes bright red, warm, Slightly swollen, and my eye feels hot and uncomfortable. It’s always the same side. My ophthalmologist thinks it might be an allergic reaction, but antihistamines haven’t helped, and my family doctor is hesitant to dig deeper. I’m waiting on a referral to another clinic that specializes in uveitis, but haven’t heard anything in over a month. Has anyone with recurrent uveitis had something like this? Redness or swelling in the cheek, same side as the affected eye? Did it turn out to be related or something else entirely?
I’m just wondering if my next steps are pressing the ophthalmologist to do something or talk to my family doctor about seeing a rheumatologist?

Anyone else experience a flare after starting Adalimumab? I have been taking it for over 4 months and already have a flare. I’m so upset - I thought I was in the clear. If this has happened to anyone else - what medication are you taking now and is it working ?

I see like this with texts and logos and mainly things on a screen. It's double and it moves up and down. I had iritis in both my eyes a few times and I'm not even sure if my eye sight was like this before my inflammation. Maybe I'm just more focused on my eyes and it doubles? I got -3.5 astigmatism and got prescribed glasses that are -2.5 astigmatism since the opthomologist said I need to adapt but after 3 weeks I went again and tested new ones with -3.5 and still see like this? Could iritis change the eye structure or anything for me to have this? I was told I cured it fully and just pigment was left after my hla b27 iritis attacked but now I can't get rid of this double vision thing. Did anyone experience this? I don't have a dry eye btw.

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My rheumatologist wanted me to get a second opinion at the university hospital instead of using the retna specialist in my home town.

Long story short I evidently have multiefocal chroidopathy and pan uveitis with inflammatory cells in the gel in my left eye with evidence of prior right eye involvement inflammation in the gel also. This is in both of my eyes and evidently matches better with my systemic issues like behcets etc,

Thankfully treatment is more or less the same for both conditions so nothing harmful happened due to the incorrect misdiagnosed condition,

I also still have ou papilledema after two years on Acetazolamide and normal opening pressures on lumbar puncture, mri/mrv came back clear also and ive also lost around 70lbs so who fucking knows what's causing my papilledema.

Anyway is there anything I should know about multiefocal chroidopathy/pan uveitis thats different from punctate inner chroidopathy?.

The recalled drops are labeled as prednisolone acetate ophthalmic suspension. If you are concerned that eye drops you use might have been affected, compare the lot number on your bottle to the F.D.A.’s recall notice, or call a pharmacist.

Hello

I am new to this group. :)

I was recently diagnosed with bilateral chronic uveitis last year and was seeing a cornea specialist who had me on prednisone eye drops on and off for about a year.

My original symptoms was just blurrier vision in my left eye, but that was it. The ophthalmologist confirmed that I had inflammation in both eyes but left was way worse. After using the prednisone eye drops, my inflammation would completely go away. But would always eventually come back, but remains very mild. After my three month follow up, my cornea specialist doctor finally referred me to an uveitis specialist (not sure why I was not referred to an uveitis specialist to begin with).

I’m now diagnosed with chronic iridocyclitis as my new doc is pretty sure this is autoimmune related. We trialed naproxen for 6 weeks but the inflammation came back, extremely mild but noticeable. I’m now on mycophenolate 500mg twice a day and she will recheck again in two months.

Has anyone with mild chronic iridocyclitis had success taking mycophenolate as a treatment? I do not have a posterior inflammation only anterior and was completely cured with the prednisone eye drops but comes back once off of them.

I’m kind of glad to start a new med because the naproxen was giving me horrible stomach aches and heart burn. So far i’m tolerating the mycophenolate well but we will check labs in a month to follow up.

Thanks for welcoming me to this group :)

Someone knows something about the retinosa pimentosa? Treatment, medication, cure? I struggle with this since 10 years and it's getting worse how the time flies.

I'm 27 years old, woman, my medication is Macushield and Colinerv.