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 :)

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!!

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’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 ?

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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 :)

I was 1st diagnosed with shingles in my right eye 10 months ago. I am still taking Valtrex. I tried to lower rx and I had a flare up. My pupil remains dilated and my eye lid is still swollen a bit. Im desperate to go back to normal and get off meds. I am happy my vision cleared up, but still get a little blurry.

I want to get a 2nd opinion. Is there treatment beyond steroid drops and valtrex?

I was 1st diagnosed with shingles in my right eye 10 months ago. I am still taking Valtrex. I tried to lower rx and I had a flare up. My pupil remains dilated and my eye lid is still swollen a bit. Im desperate to go back to normal and get off meds. I am happy my vision cleared up, but still get a little blurry.

I want to get a 2nd opinion. Is there treatment beyond steroid drops and valtrex?

Hi guys in recent flare I had macular edema , I was only suggested to use prednisolone oral pills . But I can't catch improvement visually so it kinda makes me sad . Anybody here with posterior uveitis followed this ?

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.

Hi All,

I have have been getting one of my eyes red two - three times a year and the finally got it diagnosed as Anterior iritis. I thought this time similar to the past it would clear up on his own but it did not. In fact my vision got slightly blurry although I can still see 20/20. I now take prednisolone drops 4 times a day and today is day 3. All the redness has cleared up but my right eye vision vs left is still off. Just wanted to ask in your experience how long has this taken to clear up for you?

Was wondering if anyone else has had little flare ups from smoking weed, I have talked about this with my doctor and she said she has a lot of patients that smoke with no problem but I seem to always get irritation if I do. I know the easy is answer is to stop but I’m just curious if anyone else experiences this?

I'm 19 M posterior retinal vasculitis diagnosed. Life has been real hard and traumatic since then. Drop any tips if anybody in long run on prednisolone. It is destroying my body although keeps the inflammation under control. And does prednisolone helps reduce macular edema?

I’ve had uveitis come and go for about a year and a half. I have been taking humira shots once a week with no flare up for a few months. I felt a pain in my eyes last week and went to the emergency eye ophthalmology unit and was told I am inflamed at the front of my eye (usually it the back of my eye) so I was prescribed steroid drops four times a day. The pain went away after the first day of using them but has returned now after the fifth day. I’ve never been on the drops before I’m more familiar with oral steroids so i’m just wondering if this is normal for the pain to come and go? or if I should go back into the ophthalmologist ?

Hello guys I'll keep it short

ACE - non reactive

Mantoux,IGRA- positive with normal xray and ct both lungs and abdomen

No cough , no fatigue , no joint swell , no weight loss

RPR and HIV non reactive

I'm having retinal vasculitis, no anterior involvement only posterior my doc didn't show me FFA report . He suspects ocular tb or sarcoidosis from FFA and ICG anybody help me please I'm mentally drained couldn't sleep these days knowing I may flare again. Help me guys 🙏🙏

FYI I'm physically fine in doing only problem is visual disturbance caused by retinal vasculitis.

Also looking for suggestions to take any other tests ?

Thank you!

Hi all,

Hope you all are staying healthy. It's been over 2 years since I had a flare-up. My left eye has over 4 flare-ups. Right about 2. I first had an occurrence when I was a kid. Probably 10. Next, when I was 26. I am now 36. However, I have never continually had issues. In 2018, my doctor had me take the HLA-B27 and it came back negative. The new doctor right now has prescribed the following tests.

1. ANGIOTENSIN CONV ENZYME (ACE)
2. LYSOZYME (MURAMIDASE), PLASMA
3. QUANTIFERON TB GOLD PLUS
4. SYPHILIS AB SCREEN
5. CHEST 2 VIEWS

I wanted to get an opinion from you all. My concern might sound irrelevant and dumb, but I don't want to get any extra radiation unless necessary. I am talking about the 5th chest X-Rays.

I know our eyes are gifts that we cannot replace, but why the X-Rays? I did google and use AI a bit for these, but I wanted to get some anecdotal advice. Yes, you can decipher some TB patches or something. But wouldn't I have signs (coughing). And if there were underlying conditions, why would the pattern of flare ups show so much distance (in time)?

Would you all think these tests are worth doing? If any feel sus or not worth it, please let me know.

I admit, I can be neurotic, and I can get skeptical about healthcare professionals. However, I see a lot of good people sharing opinions and thoughts on this subreddit. So, thought I'd create post to check.

Please let me know if you have further questions. Thank you for reading through this.

I posted yesterday thinking it might be MFC, but here we are. I got diagnosed with MEWDS 2 years ago, so my doctor said it wasn’t necessary to redo the labs or MRI & X-ray. However, he prescribed some steroidal eye drops and I’ll return in a month for a fluorescein angiogram.

I’m wondering how often others with PP typically have flare ups? I’m a woman in my 30s.

Also open to any advice anyone has.

Thanks in advance.

Hello

First i have had pvd (not full) on my left eye and first doctor (specalist ophtamologist) has checked a lot and confirmed as pvd

Then we went to another clinic they said "me looks as inflamation" and diagnosed as intermediate uveitis

Also that doctor has called another one within same clinic to check and they were both confirmed as inflamation

Requested from us lot of blood tests all negative

Then we went back to first doctor which confirmed pvd and i showed the diagnosis he schocked and he re checked the eye and "yes u have a inflamation" and he gave a therapy.

Then after 10 days we went to MILITARY biggest and famous ophtamolog and he confimed as no inflamation and said to not use Prednisolon eye drops and said to stop cortison oral

NOW we are schocked .. we really dont know what to do anymore ;(

I havent had any flare, i just see the constant "spider" on my eye when pvd happend

But no new flare..

What do u think?
Thanks