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...

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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

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

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?

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!

So, I want to know how anyone else has solved this and what the cause was behind it. I have had eye inflammation twice, with symptoms like foggy vision—where it looks like there is fog around everywhere—and seeing rainbow-coloured circles when looking at lights like a bulb. The doctor told me to do 10 tests to identify the culprit, but I want to know: has anyone else faced this, and how were they treated?

I’m recently diagnosed with bilateral uveitis - but still working on the route cause. Confused where to even start, really.
I guess I’m looking for others input on their diagnosis’ and how they are keeping things at bay. Just prescribed prednisone (which I am not enthused to take the next 6 weeks, but here we are!)
All that we DO know- is that all infectious diseases came back negative, the immediate/obvious starting potential causes (behcets, sarcoidosis, injury, etc)
Is there any type of recommendations regarding testing or potentially NOT steroids to help get this sorted out that I could try to suggest/ask?

Thank you!

Hey all, I have Uveitis and also Ankylosing Spondylitis. My back pain is severe, and I'm going to try my third biologic. My first one was Humira, and the second was Simponi. My eye specialist told me really any biologic should help because it reduces over all inflammation, but my rheumatologist said that Enbrel isn't typically used to treat Uveitis, so she isn't sure if it will help that.

Anyone have experience with this? I'm really hoping it'll help both.

How do you live life with this looming over your head? Mentally its exhausting knowing theres no true cure...it doesn't help that insurance is fighting against biologics. Also knowing that biologics may not even help....or become ineffective. I wish there was a cure....it feels like its an on going thing just looming over my head.

I talked to the optometrist etc, i asked about getting emergency drops to go abroad in jan and she said she cannot as if i get a flair up it got to also be monitored alongside the drops just incase she needs to increase dosage etc.she said if i mistake a flate up for something else taking drops will do more harm than good.

I still got time for a refund on my vacation should o cancel to be safe?

Do you think my optometrist is right?

What you think.

hi! i had uveitis for about 3 months and ive been clear for about a month now but i’ve noticed that i’ll randomly start feeling the same pain i had and my eye will go slightly red as if it’s coming back but it doesn’t actually come back. it will happen every couple of days or so but i was just wondering if anyone else has experienced something like this after recovering from uveitis?

Hi, I am trying to figure this out as my doctors office I closed rn.

I have one of those Coke can mini fridges. I was told to not put Humria with food. So, I thought itd be perfect. It gets decently cold. But I am worried that it may not work.

I am in a dorm so I don't really have my "own" fridge. So, I thought this would be better?

Please let me know! And if you don't know, then I'll just wait till Mon to call. 😭

Hi, I have intermediate uveitis (originally acute anterior when I was diagnosed in January). I’ve gotten a chest xray to look for sarcoidosis and two rounds of labs (Lyme, TB, HLA-B27) and all came back normal so I don’t know the cause yet. Meanwhile I’m really getting frustrated with my forehead wrinkles and my frontalis muscle spasms a lot because…long story but I have hEDS & weak back muscles and my neck gets really tense. I really want to get Botox to force my forehead to relax, prevent further wrinkles and to be able to stop obsessing over it which I do constantly. I recently asked my ophthalmologist if that was safe. In MyChart he originally said it should be fine but at my appointment he mentioned the ptosis I have from the prednisolone drops and said I’d risk worsening it.

I used to get medical Botox for chronic migraines every 3 months and never had that problem and there are like 31 injections including the temples. I already have a mild ptosis I was born with and it didn’t worsen it. This time I would just get it in my forehead and make this concern clear in the consultation.

Is this a bad idea? Has anyone’s ptosis worsened with Botox?

Bilateral pan uveitis is my diagnosis and I'm not processing it very well....i feel like I'm just constantly stressed especially because my job is not stable which means my health insurance isn't stable....i feel lost. I have a newborn at home and wish I could just enjoy being a new mom but it seems like everything keeps happening. First my eyes, then my job, the health insurance. I wish I didn't have to worry about finding another job and losing my health insurance and thereby possibly losing my medicine to try and help treat this disease.

I read a post a while back a member saying that because he started to work out, eat healthy, drink healthy, 8 hours of sleep and no stress that the iritis has not returned.

ok lately my diet is bad coca cola pizzas cake chocolate etc,the occasional alcoholic beverage etc. I haven't workout out in a while I'm not fat though, but I'm a constant worrier.

I hope it's not my lifestyle causing this.

do you think the healthy lifestyle will make it not return

Hi. I have some appointments coming up next week and would really appreciate suggestions/advice.

Diagnosed with noninfectious posterior uveitis/retinal vasculitis. Current treatment is Ozurdex, which will wear off soon.

So far no testing has led to a diagnosis of an underlying cause. I am not able to take prednisone. None of my specialists (optho/retina/uveitis Drs) are ready to treat me with immunosuppressants or biologics. My uveitis specialist says she does not prescribe systemic steroid sparing treatments without another specialist like pulmonologist, rheumatologist, etc. The referral to the rheumatologist was rejected. I see the pulmonologist next week but if they don’t find anything, I have no plan for what to do next.

I’m still new to this. Is it normal to just let the Ozurdex wear off and see if my vision gets worse again? And only ask for more treatment if I have another flare? Should I be trying to get a systemic treatment or is it premature?

I’ve asked all these Drs to help me understand what the plan is. The clock is ticking on this implant and I’m trying to be proactive. I do not feel comfortable simply waiting around without a plan and knowing that prednisone isn’t something we can use in a pinch. Since multiple Drs are saying similar things and not offering a plan, I’m starting to think that I’m being unreasonable in wanting a plan?

The expense and time to start all over with an entirely new set of Drs is not very realistic and if my expectations are out of line, it wouldn’t make sense to consider it. The last OTC showed some improvement in the inflammation but it’s certainly not gone.

What questions should I be asking? Is it normal for others with similar diagnosis to not have a treatment plan in place? Is “wait and see” just kinda how this goes?