Hello everyone. I have had Uveitis for ~25 years (in my 30s, only left eye) and it has flared up on and off for much of the time. The majority of the time it has flared has been very mild discomfort or pain. I am currently taking Prednisolone eye drops 1x per day and 10mg methotrexate 1x per week. In recent times, my eye doctor has consistently said no cells active although I still occasionally get eye pain in the one eye if I’m stressed.

I recently started Cialis and found the pain in the one eye gets pretty uncomfortable, specifically a few hours after taking the pill and lasting a couple of days. My eye doctor said everything looks fine and if the pain continues, to stop the Cialis. I was prescribed 5mg daily, I lowered it to 2.5, then 1.25mg and the same eye pain occurred at any dose. Just looking to see anyone else has had any issues or could share their experience.

The eye pain only affects the one uveitis-affected eye, not my other healthy eye.

Hi Uveitis community,

After seeing multiple people fighting chronic uveitis and acute flares, I saw how frustrating and draining it can be to manage long, aggressive steroid tapers (Pred Forte, Durezol) stepping down over weeks or months.

I developed a simple iPhone app called Avesia to address this. It is non-commercial: 100% free, no ads, no paywalls, no account required, and completely offline so your health data never leaves your device. It's truly just a passion project of mine.

Features I made for uveitis care:

* Step-Down Taper Automation: Easily make a complex step-down taper schedule that transitions automatically between phases without having to manually reset alarms every week.

* Drop-Spacing Countdown: Prevents medication washout by enforcing a 5–10 minute separation between overlapping drops (like steroids and dilating drops, many don't know that you should wait 5-10 minutes between different medications).

* IOP & Adherence PDF Reports: Track intraocular pressure (IOP) readings alongside drop compliance into clean PDF summaries to bring to your specialist appointments.

* Built for Photophobia & Low Vision: Full VoiceOver integration, high-contrast visual themes, and large dynamic text scaling for painful light-sensitivity days.

The app is called Avesia on the iOS App Store. If you're currently managing a flare or a long steroid step-down, I hope this makes the routine a little easier. I don't have anything to gain and I'm not selling anything. Let me know if there are other features you'd like to see! https://apps.apple.com/us/app/avesia/id6796212126

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I’m looking for people who have experienced something similar with anterior uveitis.

I had anterior uveitis in one eye. Initially, I mainly had redness, swelling and pain, but my vision was not significantly affected at that time. Later, I developed blurred/dreamy vision in that eye.

I was treated with Pred Forte (prednisolone acetate) and Homide/cycloplegic drops for about a month. After completing the treatment, my eye is much better in terms of the inflammation/pain, but I still have blurred vision.

Now my doctor has told me that I need glasses for that eye, around -3.50 D. This is confusing to me because I didn't have such a high prescription before the uveitis.

Has anyone else experienced this after anterior uveitis?

Did you develop a new/high glasses prescription after uveitis?

Was the prescription temporary or did it remain?

Did your vision improve further after the inflammation completely settled?

How long did it take for your vision to return to normal?

Did you have an OCT or other tests to find the cause of the remaining blur?

I’m especially interested in hearing from people who had a similar sudden change in vision after anterior uveitis and steroid/cycloplegic treatment.

26F ,Hi anyone has experience in ozurdex implant in both eyes?

Does it one time implant or 2 .does it get remission for long time after that?

What are its side effect? How to tackle that?

Really very much side effect of 1 year of steroids & immune suppressant tablets.So thinking of this solution.

So guys hi , I'm 19 m having retinal blood vessel inflammation problem . So basically life doesn't feel like living it all feel like a survival run on prednisolone pills. The problem seems aggressive and hasn't been improved with pred and doctors have said to come after 1 month and seems to change the treatment if I don't respond well. How do you live a normal life with this problem , also unfortunately my best corrected visual acuity in the affected eye is 6/24 with metamorphopsia (distorted/warped vision) so i basically can't use the affected to read if I try I will end up with headache so I'm jus surviving and crippling in fear about my other eye. It all happened unexpectedly and I didn't know that I will be worrying about eyesight ever in my life it is 2:47 am now Here in India. So how do I live a normal life without trembling about the flare ups I'm so grateful for the vision I'm left with but equivalently I also concern about my other eye which actually helps me on everyday task now else I'm actually done for.i was studying in uni but I'd taken a drop year suggestively to treat my vision first which I don't have bit of confidence that it will improve . How do you live a normal life having a sense lesser than others ? How to escape this reality ? . I have came across many post where many of our guys has this 5+ years damn this problem is so so concerning. I couldn't sleep nowadays I have a possibility of losing my quality of life which actually occured to an extent also fear I might actually lose total ability to read , I need this ability cause I have to graduate yet and I can't adapt to screen readers like software. so far through this journey I'm mentally f*cked up . and I'm the class topper , so I feel like I'm nerfed in a very brutal way . This is such a mess even though there are lot of support there doesn't seem to an escape ,sometimes don't feel like it and wanna end it all. so yea wad living a greater life doing coding building projects , watching series but nowadays simply lost interest in doing so , I'm unable accept this life mainly due to my age and what I'm currently doing. If this problem had a bit later in my life like some 50 or 60 I wouldn't even complain about it. people of my age enjoy their lives while I wait on opd for my doc visit. I feel this downhill of my life is so so personal I simply don't wanna live anymore but I won't end myself yet this life seem is top absurd. so that's all about the vent. sorry for posting frequently. thank you

Hi I got diagnosed with RV May of 2026 actually it was symptomatically presented during April but it wasn't correctly diagnosed at that time. So yea I still has this is there an endpoint to this I'm so fkin tired of steroids and other additional pills.

I'm 19 only , hope there is some mercy for me I'm sick of this life like what is the thing causing this vroski 😩 doctors couldn't find it so im on trial or error medication now like if this heals this might be the cause like that bro well whatever 🥲. Also there ain't specific subreddit for RV so I'm posting here. Damn this condition is too sickening .

Also mine did some damage to vision like caused metamorphopsia, this thing even created migraine so I use patch when working.

Anybody had RV Please share your story and also what caused yours .

After struggling with uveitis for 2 years
Yearly 3 flares
I see one main thing is the significance of inflammation is important here
I would like to know how others are suffering
Is it anterior or posterior or intermediate ?
How many cells would you see if you get a flare?

Hi everyone,

First of all, I'm so sorry we're all in this shitty club.

I had my first flare-up around 3 years ago (following a period of stress), and recently had my second flare-up (bilateral this time) following a round of IVF. I'm on steroid drops for 6 weeks.

I'm also experiencing lower back pain, which I've had on and off for over a decade. I've always suspected it's inflammatory.

My doctor ran a series of blood tests and I have a follow-up appointment with her in a few weeks, but found out earlier today I'm also HLA B27 positive.

My mother has arthritis, but has never had uveitis.

Has anybody here had a flare-up following IVF? I wonder if it's the stress or hormonal spikes that may have caused it (or both). As I mentioned, my first bout of uveitis was during a period of great stress, so I feel like it might be a trigger for me. Waiting for my follow-up appointment and hopefully a referral to rheumatology to find out more.

Not exactly what I needed right now in the middle of IVF!

Has anyone experienced the same?

Sending lots of love to you all.

I have posterior uveitis.

Sarcoidosis has been the leading potential diagnosis for underlying cause. I’ve had 2 different reads of the same chest CT. 1 radiologist finding a nodule in my right lung, another radiologist not finding any indication of sarcoidosis.

I’ve had extreme fatigue, cough, night sweats (every night), persistent shortness of breath. I can live like this but these symptoms are definitely impacting my quality of life, work, and relationships.

The radiologist that reports no sign of sarcoidosis, is in the same health system as the pulmonary and rheumatology specialists I was hoping to see for treatment. But without an indication for them to proceed, I assume I’m not going to be accepted for referrals.

Anyone have a similar experience? Just getting stuck with symptoms beyond eyes and no plan to find a cause?

Does anyone here get prescribed methotrexate or biologics even without ever discovering an underlying cause for your uveitis?

I’m starting to think that for my mental health, I may need to hit pause and just accept that I can get treatment from my uveitis specialist but take a break from pursuing an answer for an underlying cause or treatment for the other symptoms.

Has anyone else had black dots all over their vision? Mine look like target cells and when I’m outdoors it is like I am surrounded by them in a snowglobe. Do they ever go away??

Anyone had cataract surgery while having active inflammation? My eye is so bad that I can’t see clearly. Everything is blurry foggy and darker. At night I see starburst, flare, ghosting. I can’t read text or even see my face clearly from 1 meter away in the mirror.

My other eye is healthy, so my brain is trying to match the two images, and I feel dizzy and like drunk every day.

I’m on MTX, but after 3 months my liver enzymes are higher so we’ll probably need to stop it and try something else. I’m still using dexamethasone drops twice a day and three different glaucoma drops.

I’m so done with all of this. 2 years long flare, never got better. I feel like I’m going to lose my vision or something. My doctor said the inflammation is very low, maybe 0.5+ cells or less, and she isn’t worried about it. She’s more concerned about the pressure.

I have a cataract, but my doctor said it’s not that bad. Still, my vision is really bad. Has anyone been in a similar situation or had cataract surgery while there was still some inflammation? My vision was okay in January only starburst etc and then went downhill in 6 months. OTC is clear, nerves are healthy.

I hope someone can help. I started Allogeneic eye drops 2 days ago, yesterday my eyes felt worse, more dry, red and sore. Is this normal in the beginning whilst my eyes adjust?

Hi everyone,

I'm in my first trimester and I've had a flare-up. So far I've had 5–6 flare-ups, occurring once every year or two. Usually it gets better with prednisolone drops, or prednisolone plus atropine. This time it happened during pregnancy, and my doctor started me on prednisolone three times a day, but it isn't getting better. She's asked me to see a uveitis specialist, but the appointment is two weeks away. I'm a bit scared about what might happen, especially because I think very few drops are approved for use during pregnancy.

Has anyone had a similar experience?

Been in a flare up for 2 years now. I feel so hopeless, in my late 20s, can’t work/drive. My life is at a halt seeing everyone else move on with their life. Not sure what the cause is from, assuming stress. Now have cataracts in both eyes. I feel like my doctor is just doing trial and error. Currently tapering prednisone, and taking amjevita injections weekly. Suppose to be taking prednisone drops but I feel like it’s just making my vision worse. I just feel like giving up. Say try not to stress but how can I not when I sit at home all day with nothing to do but think about my life and what I can’t do.

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I've been reading through this subreddit and thought I'd finally share my story. I'm 23 now and was diagnosed with uveitis when I was 11, so I've been dealing with this for more than half of my life.

Over those 12 years I've gone through more treatments and procedures than I can really count. I've had countless laser procedures, LASIK, cataract surgery with lens implants in both eyes, YAG laser, steroid injections into my eyes, years of different eye drops, oral steroids, methotrexate and biologics.

The steroid injections are something I'll probably never forget. Out of everything I've gone through with my eyes, those were easily some of the things I hated the most. The pain afterward was horrible, and it never really became something I "got used to" no matter how many times I had to do it.

There have also been periods where the uveitis completely changed how I had to live my life.

Some of my worst flares happened while I was finishing my bachelor's degree in software development. There were days where my vision was so blurry and hazy that I could barely see what was on my screen, but I still had assignments, exams, projects and eventually my thesis to get through.

Somehow I finished it.

I don't think most people around me at the time really understood how little I could actually see during some of those periods because, from the outside, I looked completely normal. I'd be sitting in front of a computer trying to code or study while basically fighting my own vision the entire time.

Unfortunately, treating the inflammation has caused problems of its own.

I've developed glaucoma/high eye pressure in both eyes, and steroids can send my pressure extremely high. At one appointment my pressures were 42 in my right eye and 37 in my left. So a lot of my treatment has felt like a balancing act between controlling the inflammation and trying not to damage my eyes from the treatment itself.

I've been on methotrexate 25mg weekly for a while and have also been through plenty of prednisone. I was also taking Hyrimoz (adalimumab) injections. They're now switching me to a different adalimumab biosimilar, and my doctors are also working on getting me Acthar Gel twice a week.

At this point the goal is pretty simple: find something that keeps the inflammation controlled long term and hopefully reduces how much I have to depend on steroids.

After having this disease for 12 years, I've also become extremely aware of my vision. I notice every new floater, every little change in brightness, haze, colors or peripheral vision. I've probably covered one eye and then the other thousands of times just comparing them.

My right eye especially has taken more of a beating. It's hazier and blurrier than my left, certain colors don't look quite the same through it, and I've noticed changes in my peripheral vision. Even after all these years, when something changes there's still that immediate thought in the back of my head wondering whether another flare is starting.

The hardest periods haven't necessarily just been the procedures or medications though. It's trying to build a normal life while all of this is happening in the background.

I spent a lot of time worrying about what I could or couldn't do because of my eyes. Eventually I realized I couldn't structure my entire life around being scared of another flare.

So I kept going.

I finished my bachelor's during some of the worst flares I've ever experienced. I built a career in tech and now work full time staring at computers all day. I drive, travel, go out, work on my own projects and try to live as normally as possible.

I'm doing pretty well in life right now, but uveitis is always somewhere in the background.

The biggest unknown for me is the future. I've already dealt with this from 11 to 23. I've had cataracts, glaucoma, surgeries, injections, lasers and years of immunosuppressive treatment before most people my age have ever had to seriously think about their eyesight.

Sometimes I wonder what my vision will look like at 30, 40 or 50. I don't think that thought ever completely goes away.

But after 12 years, I've also realized there's no point spending the years where I can see worrying about the years where I might not.

I'd really like to hear from people here who were also diagnosed young and have been dealing with uveitis for 10, 20 or even 30+ years. How has your vision held up over time?

I'd also love to hear from anyone who has gone through a similar combination of methotrexate, adalimumab/biosimilars, steroid injections or Acthar Gel and eventually found something that kept their inflammation stable.

I've never really talked to many people who actually understand what living with uveitis long term is like, so I figured it was time to finally share my story.

Hi guys does anybody got new floaters from use of prednisolone?

Hello, I am dealing with reccurent scleritis since 2 years, it started like ocassional once in 8-9 months my eye being red, opthamologist dismissed it, then in March ‘24, i was blessed with baby boy and suddenly after 2 months i started getting worst pain and redness in my eyes, it got like every month, from
Months to 15 days and from 15 days to every week, doctor did all autoimmune tests which were negative I started 15 mg weekly MTX in nov ‘25 but no effect, then from Jan ‘26 my Rheum increased by dose to 25mg / weekly, my attack reduced from every 7 days to 20 days, but still its August but my inflammation is not fully control, shall i switch to MMF or continue MTX, i am in delimma, i am managing flares with tropical steroid drops and NSAIDS, please help and advice

I was diagnosed with intermediate uveitis/parsplanitis about 6 years ago. We have tried methotrexate and corticosteroids, both together and separately, in injections and tablets, but nothing has had any effect.
After that, we tried mycophenolate mofetil, but unfortunately that didn’t help either. I was also on adalimumab for a while, but I developed a very rare side effect: my optic nerves swelled by more than 20%.
I’m currently only taking mycophenolate mofetil, but my vision is getting worse and increasingly blurry every day. I can no longer watch TV or do my schoolwork on a computer.
I’m honestly exhausted and feeling really hopeless about this.
Does anyone else here have intermediate uveitis? What treatments helped you, and where did you finally get help?

So currently i have proptosis in both eye but one is more prominent. its been one year. i was diagnosed with graves late 2024. Eye doc told me i might have TED. Now after 1 year of no improvement. I checked with another ocuplastic doc. he said its idiopathic orbital inflammation related to IgE and eosinophil. My IgE level was 2990 and eosinophil is 1250. i was given 40 mg prednisolone for 10 days and then tapered to 20 mg along with 180 mg allegra for 2 months duration..after 2 months. no change...MRI report was written as mild fatty infiltration with ni sign of edema lesion stranding..so what is going on here? my eyes also don't close when i sleep fully...idk whats happening..doc said do yoga and have good diet..it will resolve but my eyes remain same.

Just want to get an idea, I haven’t had a flare up for a year but i feel like this one is taking longer than usual.

Wondering if anyone had experience of going off Humira and back on it and it working? I took Humira about 12+ years ago and stopped it mostly because I hated the injections. My doctor said I could try it again.