r/Uveitis

Happy weekend everyone,

As seen I was recently diagnosed as HLA-B27 positive after a bad bout of Uveitis in the right eye. I don't believe I have AS but will need testing. What particular tests should I have done? In addition to that, I battle consistent red eyes that are on the mild side so it's sort of manageable with Lumify. It gives me so much anxiety with work and the implications so I need to find a solution. What can I do?

Best

I was diagnosed with anterior uveitis yesterday.

My eye was a little red on Wednesday, but I didn't worry too much because I've had conjunctivitis before, and for once I decided not to panic.

On Thursday morning, I woke up with my eye completely swollen, and the redness had spread. My eye was watering, and I was a little sensitive to light.

I went to see the on-call doctor, who immediately sent me to the ER because he wasn’t sure of the diagnosis since I wear contact lenses.

At the hospital, the resident examined me and immediately told me it was uveitis, before adding, “In one-third of cases, we can’t find a cause; in the rest of the cases, it’s an inflammatory disease. You’ll need to have a chest CT scan and a blood test.”

I burst into tears, and he didn’t understand why.

Since then, I’ve been terribly worried and I can’t stop crying.

My ex-partner had neurosarcoidosis, and I cared for him for many months. I witnessed the side effects of his treatments, his relapses, his hip replacement, his shattered skeleton, and his weight gain.

What should I expect? I arrived at the hospital with a red eye and left with a suspicion of a serious illness.

Thank you all.

On recall by USA Food & Drug Administration

PRED MILD (Prednisolone Acetate Ophthalmic Suspension)

Company: AbbVie Inc.; Allergen, Inc. (an AbbVie company)

Manufacturing Location: France

Scope: 2,736 bottles (0.12%, 10 mL)

Drug Purpose: Steroid eye drop used to treat eye inflammation

Recall Reason: Failed stability specifications; this could affect the drug’s effectiveness and shelf life.

Recall Date: May 18, 2026

Link: FDA Enforcement Report 

Prednisolone Acetate Ophthalmic Suspension, USP, 1%

Company: Lupin Pharmaceuticals Inc.

Manufacturing Location: Pithampur, India by Lupin Limited

Scope: 2,530,182 bottles of 5 mL, 10 mL, and 15 mL prednisolone acetate ophthalmic suspension

Drug Purpose: Steroid eye drop used to treat eye inflammation

Recall Reason: Presence of foreign substance (Because this recall was just announced on July 1, 2026, there are no additional details listed at the time of publication).

Recall Date: June 4, 2026

Last week I had some sudden pain behind my eyes and significant increase in light sensitivity. There is no redness and I have no changes to my vision. Just discomfort and light sensitivity.

I saw an optometrist the same day and she did not diagnose me with anything since there was no obvious signs of injury. She mentioned uveitis and ankylosing spondylitis because of some other symptoms I have. But it seems like she followed the uveitis treatment plan and gave me steroid eye drops. So I am assuming this is uveitis.

When I researched uveitis it sounded just like what I’m experiencing, but without any redness.

At my follow-up appointment she told me to wean off the eye drops and I was all set. But I don’t feel all set and I have more questions than answers. I don’t know if they’d have any other tests they can do. And I am feeling better, but I’m not confident that I’ll be “cured” by the time I’m done tapering.

Here are my questions:

1. Is it normal to not have any redness?

2. Should I see an ophthalmologist instead of an optometrist for a second opinion?

3. Do you think I’ll feel better by the time I taper off the eye drops? (I realize the answer to this depends on the person but I’m worried and skeptical)

Any advice is welcomed!

And as a side note, I started acupuncture the same week my eye issues started and omg it has helped my symptoms so much! Just sharing in case this can help someone else, too!

NOT ASKING FOR MEDICAL ADVICE

After getting my first ever tattoo (full blackout/geometric/mandala sleeve) I still have 1 more session to go totaling in 5 sessions (8-9 hour days).

After 4 months from my last session (4th session June 2025) my right eyes started acting weird. Went to the eye doctors and they could not tell what was going on... The eye doctor figured out it was Uveitis after a few weeks of constant checks. He then did the steps needed to see what was causing it. I had a bunch of blood work done, x-rays, Rheumatology visits and everything was pointing negative which the eye doctor thought was very odd as he has never seen Uveitis appear on someone where every check shows negative and let alone only 1 eyeball affected.

After months on being on steroid eye drops he suggested I go to an eye specialist, specifically an eye doctor located in Philadelphia who is apparently a world renown eye doctor who specializes in Uveitis.. I made my appointment and made the drive. He looked through my medical history, notes, test results from everything I was asked to do for the past couple of months and he then asks did you do anything to your body out of the norm in the past year or around 4-6 before you started noticing eye issues? possibly a tattoo? and I said yes I got a tattoo (I had a jacket on). He asked to see the tattoo and saw some raised areas (when rubbing your finger against it you can see the skin was raised). He then said you have tattoo associated Uveitis. Very uncommon but "I went around the world and studied tribes with art on their bodies and did a whole research paper on Uveitis and tattoos". Reason he said this was because he had a student there I guess shadowing him so he was explaining to her what could cause this.. you can look up on google "Tattoo uveitis Dr. Dunn" and his stuff will appear. It is a SUPER rare and uncommon trigger that do not have all the answers.. my first question was did I go to a bad artist? he said no you can go to any tattoo artist in the world and this would've happen to me.

Regardless, my question is anyone that was diagnosed with Uveitis after getting a tattoo, did you continue getting tattoos after or stopped? I have my next appointment with the specialist a month before my 5th session so whatever he says I will go with and cancel my apt but... just curious to know what others have done.

Hi all, for those who get flashes with their posterior uveitis, how long does it take for prednisone to help improve + how much of prednisone are you usually prescribed?

Has anyone experienced this before?

I have uveitis in my left eye and I’ve woken up with a headache in my left side, and what feels like a swollen left side of my face but it’s not visibly swollen, and the inside of my left ear hurts too.

I’m on steroid drops already Pred Forte 1% and have been on them since 2024, with my longest break in flare up being about 3-4 months, and I’ve been on them every day since March for a recent flare up.

Just had follow up and it’s been about a year since my steroid injection and I've been cleared after about three years of trying to figure this thing out. Pressure at 15 in both eyes and no inflammation or worsening vision. only affected the left eyes and main cause was untreated infection and undiagnosed diabetes affecting healing and compromised my immune system. A1C under 7 and ready to live a relatively normal life! Best of luck to you all.

I wanted to write this to potentially help others as I found Reddit a great source of help when I was first diagnosed with severe intermediate uveitis and cystoid macula oedema in my left eye.

I was a 42 year old male. Demanding but enjoyable job and busy family life with small children (wife also working a demanding job). I wasn’t particularly unhealthy/overweight but I didn’t do much exercise and ate a carb heavy diet.

I had some mild stomach issues - mainly bouts of nausea and/or constipation - for 6-12 months prior, but no other health issues (past or present) other than lacking energy. I was one of those guys who had barely visited the doctor in 10 years.

Then three things happened:

1. I got a big promotion at work, in a very different area. I went from having no line management responsibilities to a team of 30 and several personnel issues to deal with. The business was in bad shape and I was now responsible for turning it round, but knew very little about it.

2. My mother was diagnosed with dementia.

3. My daughter (age 6) started to go through a really tough time at school, resulting in not wanting to attend / very stressful mornings trying to get her there.

I did what I usually do when faced with stress - just ploughed on. I wasn’t getting enough sleep, was eating lots of convenience food and trying to pretend to myself/everyone that I was coping fine.

My right eye is my dominant eye so I didn’t really notice when my left eye started to have problems, but it got to the stage that I couldn’t read car number/license plates without shutting my left eye. Thought I just needed glasses or something so made an appointment at the opticians for a couple of weeks’ time. Of course the optician realised something was seriously wrong and sent me to the nearest eye hospital emergency department.

That morning at the hospital was one of the scariest of my life. Doctor after doctor wanted to take a look at the state my left eye seemed to be in - I felt like a medical freak. The scans showed severe inflammation in both the front and, more significantly, the back of the eye (CMO). I kept mentioning stress and my stomach issues but no one seemed to care about those. The consultant had a very frank conversation with me that he was putting me on high dosage (60mg) oral steroids and eye drops in the ”hope” that they reduced the inflammation in my left eye. The undercurrent the whole time was that was the start of a long journey and was likely to be chronic/recurrent.

I left the hospital with my head all over the place. It took me two days to even start taking the steroids as I couldn‘t process it all. I was dreading the potential weight gain, moon face, type 2 diabetes risk, etc.

I decided I had to change my recent habits so I changed several things:

- I prioritised sleep over almost everything else - 8 hours a night

- I stopped caring about work. Not completely, but I told myself I was not going to let it stress me out...and somehow/weirdly this worked surprisingly well!

- I began eating much more healthily - avoiding inflammatory foods, fatty meat, white carbs, UPFs, dairy, gluten, etc. - increasing my intake of fibre (lots of fresh/fermented vegetables, beans and fruit) and lean protein (mainly chicken and oily fish)

- I started to meditate, using an app to help teach me

- I made much more effort to exercise - mainly cycling, which I used to do much more of. The steroids actually helped here as I had much more energy whilst on them.

It was a slow process but the steroids started to work and vision started to return to normal. Rather than putting on weight, I lost about 8 pounds, dropping a waist size. No moon face. Blood sugar normal.

I spent more than 6 months tapering down. I was really careful when dropping dosage to ensure it wasn’t when I was stressed/sleep deprived/had lots on at work/etc.

I hated the steroid eye drops - they made my eye dry, sore and (at times) blood shot. I tapered these as fast as I dared.

Every time I visited the hospital the doctors would talk to me about what the options if it came back - implants, immunosuppressants, etc. Even once I was off the medication, they wanted to see me regularly to check it hadn’t returned.

It’s now more than a year since that first trip to the hospital and I’ve been off medication completely for 6 months. No signs of anything returning. I keep eating healthily (but with the occasional cheat meal/naughty snack!), exercising and I’ve recently quit my job to move to something with less stress. I meditate occasionally still.

For me, I can’t help thinking that the uveitis was a symptom of stress and not looking after myself, despite the doctors not really seeing this as the cause. My stomach issues have gone and my eye is (for now) back to 20:20.

I’ve enjoyed writing this all down and I hope it helps others who may be in a similar position, albeit I realise for the majority of people here their uveitis may not go away so easily.

Happy to respond to any questions you may have.

Is it normal? I was prescribed steroid drops and iris enlarging drops and my uveitis is gone but I feel like I see texts and certain things literally double. Will it come back 🥲

Hi everyone, I’m hoping to hear about your experiences and gain some perspective.

I’m 34F, and I’ve been dealing with recurring anterior uveitis since 2020. I'm also HLAB27 positive, but have not been officially diagnosed with any other autoimmune condition. My rheumatologist says I may have an inclination towards Ankylosing Spondylitis but it is not present yet. I've only had 3 episodes so far but my episodes have become increasingly aggressive, requiring me to step up from Prednisone to stronger corticosteroids - Durezol/difluprednate. Because I’m worried about the long-term side effects of relying solely on steroids, I recently saw a uveitis specialist who recommended moving to DMARDs, specifically Methotrexate (MTX).

This has been a lot to process because my husband and I were just starting to consider family planning. The specialist advised that he wants me on a 2-year treatment plan and that I absolutely cannot be pregnant during that time. This news has really halted our plans. We are also currently exploring egg freezing options.

I’m hoping to get some input from those who have been through this:

• How did you respond to Methotrexate? Did you find it manageable? Any specific side effects?
• Is MTX typically a lifelong medication, or have many of you been able to stop after a certain period?
• How did you navigate family planning while on these medications? Were you able to pause MTX and start trying for a baby after 2 years? Did you experience any lingering fertility impacts?
• I’m planning to ask my doctor about switching to pregnancy-safe biologics instead of MTX. Has anyone successfully advocated for this switch, or had a similar experience navigating insurance/doctors to get on a pregnancy-safe alternative?

Any advice, personal stories, or questions you suggest I ask my specialist would be so appreciated. Thank you!

I apparently missed my HLA-B27 gene when I was glancing through the blood test results online but apparently i have both anterior and posterior uvietis (Birdshot Chorioretinopathy and anterior uvietis) and was curious what signs others have had in daily life and how you handle quality of life? My vision is a train wreck and a half, and I have more flareup days than I do good days. Thanks in advance!

Do we have people which couldnt find any infection, imflamation on their blood tests and all other test were negative (idiopatik)

And that have had only one episode?

Or these people which have no episode anymore dont comment here and live their lives :D

Thanks

Hey y’all, been lurking and exploring this subreddit for a while before getting the courage to post. I’m 24F in the U.S., living with chronic anterior uveitis and ocular hypotony or low eye pressure. I had cataracts as a teen/young adult and got surgery at 21. I got mono lenses because it was all I could afford. It was successful in one eye but not the other, one eye seems to be targeted worse by the uveitis (doctors don’t really know why), and I lost my vision in one of my eyes (light perception only) in my early twenties. My other eye is all I’ve got, it’s a trooper but has its issues.
Finally wanted to post because I’ve been feeling really alone in all of this, struggling in living with presbyopia post cataract surgery including daily life struggles, and just difficulty with navigating space and having horrendous body/spatial awareness from my myriad of conditions.
I’m so glad this community is here, and I hope some of you have had similar experiences or advice. Looking forward to meeting people 🫶🏻

Hey everyone, I'm 27 female with panuveitis (for 7 years) and glaucoma (for about 6 months). My doctor said i have a early degree of lens change in both eyes in the last letter he sent to me. He probably mentioned it while actually looking at my eyes but I didn't know what it meant so it never really registered. I have since googled it and learned it means I have started to develop cataracts. I used to use prednisone for about 6 years now I'm on lotemax.

How quickly will the cataracts develop now I've got them? I worry that even though it's taken years for them to start, they might escalate quickly.

Will it be posterior subcapsular cataracts? I googled that that is what it will most likely be.

Will this effect my other conditions? Make them worse?

What is your experiance with this combination of conditions?

How do you deal with having so many eye conditions? Is there another one around the corner for me?

After suffering from dry eye disease, ocular rosacea, trichiasis, distichiasis I was finally diagnosed with Ocular Cicatricial Pemphigoid & have been on immunotherapy for 6 months. This is my biggest issue. So frustrating I can’t function normally. 😤

Pics in comments. Bottom lashes growing straight up rubbing my eye. Top lashes in corner growing down. I get them plucked every 3 to 4 weeks. They usually pluck 30 eyelashes.

I have recurrent, aggressive anterior and intermediate bilateral uveitis caused by my tattoos. Before starting Humira, I couldn't taper below 20mg of prednisone without having a flare (I had macular edemas and optic disc inflammation every single time).

For the first time since December 2024, my eyes have been completely quiet for two months. My doctors and I are now hoping to taper off prednisone completely in the near future.

Humira doesn't work for everyone, but if you're just starting it or waiting for it to kick in, don't lose hope! It took time, but it has been life-changing for me. I can only hope it'll continue to work for as long as possible 🤞

Wishing everyone the best ❤️

Currently on my 5th attempt to taper off prednisolone after being diagnosed with anterior iritis in February, and I feel that pesky dull ache slowly coming back. Each time I rebound my ophthalmologist will just up the dose again and again and try to taper off slower the next time. I’ve done a week of oral steroids as well to try to hit the inflammation harder this round and there are zero cells at every appointment so we thought this would be the final taper, unfortunately probably not. I’m also a steroid responder so my Dr is becoming concerned about my pressures and added on another drop to lower them. At what point should there be another course of treatment? She seems pretty passive about it, “you just don’t respond well to steroids it seems” but hasn’t recommended another course of treatment after battling this for 4 months. Is this going to be my life forever 😂. All tests have been negative regarding autoimmune as well.

23/NB just diagnosed with posterior uveitis last week! I also have OCT, Chorioretinal lesions, and mild disc edema. Idrk what all that means it’s just what was in my impressions in my clinical notes. Everything the doctors say is a bit confusing. I’ve never had vision problems before, but I am also diagnosed with familial ademosis pyllopsis or F.A.P for short. So medical issues aren’t new for me. In short I just came to say this experience has been very isolating. I feel like I cannot find people like me I guess. Idrk. This is all so confusing. I have big large grey area in my left eye, and recently have developed some floaters in the good part of that eye which is very little. I can still see through the grey area sometimes everything is just grey. Doctors say I will not be getting my vision back. Just never thought I’d ever lose my vision like that. Thankfully only in one eye. I just feel so alone and lost and would love some guidance, advice, kind words.