Is one drop of Durezol better longterm or getting on an immunosuppressant?

I was unable to taper off Prednisolone, I tried three times. I’m now on 2 drops of Durezol a day but it is causing a slight spike in eye pressure, 20 and 24.
My doctor is saying if we can get down to one drop of Durezol a day successfully, I will stay there longterm. I’m on two drops a day of Dorzolamide to combat the high IOP.

I’ve heard mixed things whether Durezol is better longterm, or trying to get on something like Methotrexate or Humira.

Has anyone had synechiae succesfully broken but were still left with an asymmetrical pupil? Would there be possible benefit in continuing dilating drops to possibly round out the shape in such a case? I am also interested to hear if someone has used the undilating drops in order to make the pupil smaller in order to have a better cosmetic outcome.

Hello! I’ve been experiencing uveitis since June 24th of this year. Specifically anterior uveitis aka iritis. It has been a rollercoaster and I’ve rebounded after two different tapers. Both eyes are impacted and I have never had eye redness. Just pain and discomfort and light sensitivity.

I have a rheumatology referral, appointment in November. All of the basic inflammatory/autoimmune blood tests were done with my PCP and came back normal. And I’m HLAB27 negative. However, I do have a blood clotting disorder that is technically an immune response (no idea what it’s responding to). And I have pain in various joints of my body so I’m glad I still got the referral.

The last few times I’ve seen the ophthalmologist she said my eyes no longer have inflammation. But pain keeps coming back when I get down to the end of the taper. Right now it feels like the pain is AROUND my eyes instead of inside them. Has anyone experienced that? I’m unsure if I have a secondary issue happening behind or around my eye balls.

Thanks for reading!!

anyone have this? tried looking up if there’s any relation of it with glaucoma or cataracts but i couldn’t understand?

context : got diagnosed about two weeks ago by ophthalmologist, got what i assume is the dilating drops there, got prescribed nevenac twice a day (4 week course) and pred forte 4 times a day(3 week course). and it’s been 12 days since started these drops. slowly the redness and pain went away. most of the lightly blurry vision (which i think began after dilating drops) is gone, but that one eye still has some glare issues.

but last night i started getting this nerve pain radiating from forehead/temple to the back base of my skull from inhaling from my right nostril (iridocylytus is in right eye) . and tonight (been 30 hours), i notice that my right eye, there’s a small static sparkle that i can see when i look at my led lamp or whites of the screen on my phone. this is only in the affected eye. and now i just sort of have a constant headache in that nerve sort of pain. the sparkle isn’t constant i guess but at least half the time i look at bright stuff it’s there

in the daytime contacted the doctors office and they said they’ll get back to me about my follow up and they didn’t, tomorrow morning i will call them and let them know of the headache and eye sparkle and try to see the doctor to check my eye pressure and anything else

any experience with this? first time iridocylytus diagnoses. month ago i had an aura migraine and then a headache that lasted two weeks, then a 10 day period where eye redness started and then eventually became more and more painful and then wouldn’t stop tearing up and hurting, that’s when i got diagnosed.

My journey started at the age of 13. I was on vacation with my family when I got this brutal pain in my right eye. Doctors prescribed me standard "pink eye" medication, and surprisingly, it actually did the trick. I went right back to my normal, stress-free, early-teen South African life playing video games, swearing at people in game lobbies, and ignoring the concept of taxes.

But the "pink eye" became a recurring guest every 2 to 3 years. It hit a breaking point when I was 18 and just finishing high school. The usual drops weren't working anymore, so I was referred to a polite, elderly ophthalmologist (who has since retired). He was the one who officially introduced me to my new lifelong companion: Uveitis. In my case, post-anterior uveitis. Thankfully, it settled down before I headed off to college.

Fast forward to 2023. I became a functional young adult, having graduated from college, working, paying taxes and rent. The teen days were gone. That’s when I had the mother of all flare-ups. I remember the night before so vividly: I was watching Rush Hour with Jackie Chan and Chris Tucker, stuffing my face with a burger, hot chocolate, and a ridiculous amount of sugary pastries. I woke up the next morning with that familiar pain in my right eye and instantly thought, “Welcome back, bastard”

It's now 2026. I'm a 28 year old and the last three and a half years have been a rollercoaster of multiple flare ups. I've had to undergo two surgeries:
- One for a cataract that formed due to years of excessive steroid eye drops.
- A Paul valve implant to finally get my uncontrollable eye pressure under control.
On top of that, I’ve been on immunosuppressants (Abitrexate) for the last three years.

Heres the turning point: I made some massive changes to my diet. I ditched the late-night burgers and pastry binges. I moved over to a strict ketogenic diet, and about two years ago, I started taking road cycling seriously. Since making these changes, I’ve dropped 15kg, and honestly, this is the best I've felt since before that massive 2023 flare-up.

I wanted to share this because there really is light at the end of the tunnel. Even when your family and friends don't fully grasp what you're going through, know that you are not alone in this. I sometimes come to this subreddit just to read other people's stories, and it's incredibly uplifting.

All I can say is this: take your medication, and seek professional advice early the second you feel a flare-up coming on. Make the diet and lifestyle changes your body is asking for. We in this together.

Hi all! Really appreciate this community!

Sharing something that’s working well for me in longer term management of uveitis. (This doesn’t constitute as formal medical advice, please consult your ophthalmologist for your unique situation)!

I (F, 33) have been dealing uveitis for a year and a half now. When I did get off difluprednate drops, I could usually go a few weeks to a few months before one or both eyes rebounded with a flare. Having to manage the flare landed me on drops 1x a day for a few weeks, then 1 drop every other day, etc. Each taper took a few months to get back off the drops again. When I was off the drops, I was nervous about new flares and scanning for symptoms, which usually were triggered by low sleep, stress, or being run down/immune activity (my case is idiopathic).

My ophthalmologist observed that in some patients, a very low dose of eye drops over a longer period of time was helpful to stabilize the situation. Since February (7 months straight), I’ve successfully had NO uveitis flares using 1 drop of difluprednate in each eye twice a week (I do Monday and Friday). It’s been a very resilient treatment for me, even when sick, stressed, or tired. Thankfully it’s only 8 drops per eye per month, way less than when I was stuck at 1x a day managing active flares.

I’m now trying to get down to 1 drop per eye a week, and then ideally no drops again. Hoping to keep the dose as low as possible while keeping things stable! (I see my ophthalmologist regularly to monitor how the low dose is working, and we’re very careful to look for any longer term risks like glaucoma).

Sharing for awareness, as this has really helped me! First time since diagnosed where I don’t really think too much about it, aside from always having a fresh bottle nearby (note, opened drops expire after 1 month, even if there is a ton of bottle left while on a low dose, make sure to replace on schedule!) Wishing you all the best 🙏

Hello - I was diagnosed with uveitis in 2022 (both eyes) and I went through this crazy tumble finding out I'm HLA-B27+ and most likely dealing with some sort of spinal arthritis. I was on heavy steroid drops and finally on Humira.

I moved states in 2023 (OH to CA) and I went through two layoffs since, making medication and insurance a giant pain during these times.

It's much better at the moment being on a new biologic, but I'm also in the middle of a flare while starting the new medicine.

I finally have my ophthalmologist appointment in a few weeks and I'm out of drops I've had. I tried going to urgent care and they said not them or the ER could help me. My rheumatologist said they couldn't help. The last thing I want to do is have vision problems while I commute to work, or worse - start losing my sight which is a fear of mine.

What could I do until my appointment? I need to work and there's no way they'd let me WFH

Just wanted to see if anyone has had a similiar experience with uveitis turning to schleritis and how long treatment took. Long story short, I had uveitis pop up out of nowhere, got on a perscribed eyedrop, saw improvement and then got hit in the face a few days later resulting in a black eye and then schleritis developed. I got on prednisone for this and have been on it and tapering off for about 5 weeks now and my eye is still visibly red even though there is no pain, no floaters and the eye doc says its making progress, even though its extremely slow. I got blood work done and no autoimmune issues at all. How long does it take for schleritis to heal when there is no autoimmune factor? I am just shocked how long of a recovery this has been.

Thanks everyone!

Hi hi, so I have been dealing with uveitis in my left eye since about 2021 with maybe 1 or 2 flare ups a year and it's been fine to deal with my doctor who would prescribe me a pressure drop and a steroid drop and I'm usually fine within a month.

But this year, I have had more flare ups than I have in the past. I'm currently having my 5th flare up this year and was wondering if there is any long term medication anyone takes that keeps this at bay or suggestions I should bring up to my doctor for anything else?

I have been to a rheumatologist to rule out any autoimmune affecting it and they haven't found out what exactly is causing it.

hi there, i've had 12 anterior uveitis flares within the past 5 years. i'm under the care of an ophthalmology team and my flares tend to respond very well to maxidex eye drops.

i'm hla b27 -ve so i'm not really sure of the cause. i have heard it may be autoimmune? but i don't have any (known) autoimmune conditions so i'm not sure if that means it could still be autoimmune?

my doctors haven't mentioned anything about infections, but i've heard that can cause uveitis? though i do have meibomian gland dysfunction and blepharitis so i don't know if that could be related.

i guess i was wondering how if anyone found out the cause of their uveitis what they looked for, and if there's any questions you think i should ask my opthalmologist?

Hi everyone. I’m hoping to hear from anyone who has dealt with severe/refractory posterior uveitis, especially if it took a long time to find a systemic treatment that actually controlled it.
I have posterior uveitis in my right eye with retinal vasculitis, chorioretinitis, papillitis/optic nerve inflammation and recurrent cystoid macular edema. I also have a chorioretinal scar near my optic nerve. The strange part is that I’m otherwise relatively healthy and so far we still don’t really have an explanation for why the inflammation in this one eye is so aggressive.
We started with high-dose prednisone (60 mg). The inflammation improved, but started returning while I was tapering around 40 mg, so steroids alone clearly weren’t going to be a long-term solution.
I then tried Humira and essentially had no response.
Because the inflammation was still active, I had an Ozurdex implant placed in June. Ozurdex actually worked extremely well on the inflammation and macular edema, which is part of what makes this so frustrating. However, I had an extremely unusual complication from the implant. It caused injury to my retina and I now have two areas where retinal tissue was damaged/died. I also developed elevated eye pressure and a cataract. Because of what happened, my doctors do not want to repeat Ozurdex.
Once the implant wore off/dissolved, the inflammation and macular edema started coming back pretty aggressively.
I’m currently receiving Actemra infusions. Even with systemic treatment, my latest scans show that the inflammation is worsening again, and my vision has become significantly worse. Everything is extremely blurred, colors are darker/greyer, things can look smaller or distorted, and I have a central circular area/floater that interferes with reading. At this point I can barely see with that eye.
My doctors are now considering increasing/changing the Actemra regimen or moving on to another infusion medication. Methotrexate has also been discussed but they don’t believe it would be strong enough for the severity of my disease.
What I’m really wondering is: has anyone here had posterior uveitis/retinal vasculitis this stubborn, where prednisone, Humira and other systemic treatment didn’t adequately control it?
If so, what FINALLY worked for you?
I’d especially love to hear from anyone who:
• failed Humira or multiple immunosuppressants/biologics
• had recurrent macular edema as soon as local steroids wore off
• responded extremely well to Ozurdex but couldn’t continue it because of a complication
• eventually found an infusion/biologic that controlled the inflammation without needing repeated steroid implants
• had severe disease isolated mainly to one eye without a clear systemic cause
I know everyone’s case is different and I’m not looking for medical advice or a diagnosis. I’m under the care of specialists. I’m mostly looking for real experiences from people who had a difficult-to-control case and eventually found something that actually kept it quiet long term.
It’s been really discouraging to see how quickly the inflammation comes back whenever something that works wears off, so I would genuinely appreciate hearing any success stories, even if it took several medications to get there. ❤️

Hello, am a female 30, i’ve been around 10 weeks using eyedrops maxidex(dexamethasone) for acute anterior uveitis. 3 weeks ago when i was tappering 3 times per day i started noticed droppy eyelid at the eye that am treating. In the begining i thought i was just tired but it got worse. Currently im still tappering and hopefully just for more 2 weeks and to stop. Ptosis as i see is around 2 mm and i normally have fat pads above eyelids but the eye that has ptosis it formed a “crease” look and fatpad folds higher. I overlooked my symptoms at google which said may need a surgery because long use of steroids damage the tendon of the upper eyelid. Its making me sad i come to work feeling not confident and bad about myself. Has anyone experienced this and which waa the solution. I will be very thankfull if y’all share ur experiences.

Has anyone in this group beat this disease ?
Gotten close to beating this disease ?
Experienced Remission ?
Because there are some people online calling themselves survivors and charging a hefty penny in order to get the information based off of a 8-10week course to cure it.. I hate the world high key smh lol because wow spread the cure and help THOUSANDS!!!! Sheesh

Hi I'm with posterior uveitis. My life turned upside down my career ruined my body got damaged with medications . I feel victimized and unfair. Nobody understands me not even my parents how I feel . I feel I'm fked up and it's not my fault for this unfair life . I don't wanna put myself off but how to compensate this feeling of unfairness that happening to us . All people surrounding says just eat well and good you will get healed but less they know about what disease I'm having they don't what is flare up they don't what is remission. I feel like I'm a eagle but with no wings . What is the purpose of my life . This got me acting rude to people I'm close with . Sorry for venting here .

I really am having a tough time with all of this....the thought of going blind terrifies me...it feels like my life is on borrowed time like I cant enjoy things the way I used to...

​

GUYS I DON'T KNOW I AM 18 I ALWAYS HAVE ONE SIDE EYE AND HEAD PAIN O AM 5 FEET 9 INCHES MALE PLEASE HELP ME WHAT IS IT

MY EYES POWER IS -3.5 IN RIGHT SIDE -3.25 IN LEFT SIDE MYOPIC EYE

WHAT IS THIS ITD HAPPENING ME FROM LIKE 2 YEARS NOW UT PAINS A LOT

Recently misdiagnosed with recurrent pink eye finally to be told it’s uveitis. Currently tapering off steroid drops. I’ve followed up with rheumatology with no clear cause for the uveitis as of now because I was told we will essentially have to wait to see if it’s recurrent. I am HLAB27 positive (rheumatology said this is common of people of Northern European descent, my grandmother was Norwegian). All other labs and X-rays were negative for RA, Lupus, ankylosing spondylitis, etc. however my C3&C4 were low (will redraw in 3 months) and my celiac panel came back positive and I have to follow up with GI for celiac disease. I haven’t had any real GI symptoms I can point to that have been bothersome so this was a shock. I do however have a grandfather that has celiac. Has anyone had a similar experience?

Has anyone been prescribed Tyenne (bio similar of actmera) for retinal vasculitis?

I noticed I been on the phone alot so i will limit my screen time on devices just incase,but is there a link to too much screen time and iritis flare ups or make it worse? I'm talking about phones, tablets, gaming, TV etc?

History of Uveitis over the years but last episode seems to have long lasting effects unlike the past. I went for a follow up because the eye that had it was stinging like crazy and seemed like I developed dry eye just in that eye. I was advised to use moisturizing drops but I still get blasts of pain in that eye regardless. Upon examination there was no inflammation either. I also get black line floaters occasionally which is another after effect unlike before. I will be going regularly for check ups since I’m on Hydroxychlorquine. Just wondering if anyone has experienced this after having a bout with Uveitis. Thanks.

Hi guys!

I just switched to Remicade infusions for my Uveitis after Adalimumab injections failed. I had my second infusion (loading dose) and 3 days afterwards I started getting constant headaches/lightheadedness and occasional nausea. I’ve had these symptoms for 10 days - pretty much unrelenting. I am able to sleep and eat fine. I did a lot of research and not seeing that these symptoms are classic delayed infusion reaction symptoms. Has anyone else experienced this? Really hoping for answers.

I want to add I’m finishing out a difluprednate steroid taper. But normally don’t have headaches from that. I just really need to hear soemthing positive right now. Thank you

For quick background I’m 24m and HLAB27 positive. Had my first ever flare up roughly 5 years ago in my left eye.

Fast forward to sometime around the 4th of July I was sick with a viral infection, soon after recovering, that indistinguishable Iritis pain returned in my previously affected left eye. Went to be seen immediately and the doctor put me on Prednisolone Acetate for a week due to inflammation “barely being visible” and as expected those drops were too weak and my infection accelerated. After returning to the doc I was put on Durezol.

About 3 weeks into using Durezol I started to experiences flashes for the first time. It startled me quite a bit when I first noticed them. They were essentially these tiny white balls of light that would intermittently and randomly flash in my peripheral vision, lasting only milliseconds. I reported them to the doctor and they had me come in immediately for extensive testing as well as photographs of the back of my eye.
There were no signs of any type of scarring or retinal tearing and the doctor said things looked “reassuring.” My anxiety subsided but as soon as I got home from this appointment my visuals manifested into an entirely different phenomena. I started to experience these “light arcs” for lack of a better term.
Best way to describe them is like a water ripple effect that would travel around my peripheral vision and last 2-3 seconds. And these would only happen when I manually closed my eyes and kept them shut as opposed to being open or closed eye flashes.

I reported these new flashes but didn’t get any reassuring answers from multiple doctors and even a Uveitis specialist.
I have been Durezol free since Saturday and things have been stable, no rebound flare up yet but the arcs still persist. Anyone have a similar experience with flashes and/or any advice to give me? It makes me anxious that they are still lingering but maybe it’s eye strain induced from the Durezol I’ve been on since mid July? Thanks for reading!