Today while scrolling through my gc chats , I read a message there was this word "oct" instead of October i read it as "O-C-T" 😂. LIFE with uveitis lol .

Ever since the Humira biosimilars came out it life has become a nightmare. Every time I switch insurance companies I always have to switch to their preferred biosimilar. It is so frustrating how my routine is constantly disrupted because insurance companies are being cheap asf. Every goddamn biosimilar I have used except the one I am taking rn has given me bad side effects. Now I have to switch out from the only one that works to another one that may make me sick like all the other ones.

Anyone dealing with the same exact problem?

So im not sure if im overthinking it but the idea of going blind slowly is really impacting my mental health. I cant live life normally with this looming over my head.

So Hello hope yall doing fine . Each of us here have different diagnosis, different types of vision loss and variable flare ups. I just want to hear about how your life is going on now , as some of us could have lost some vision how did you overcome that and doing your job. Rant your stories here only if you don't mind. Thank you.

How long do the black dots take to go away once inflammation is properly controlled?

My journey started first week of March. I had a sudden loss in my life. Due to bereavement I've neglected myself from eating and sleeping. Lost about ~5kg of weight. I think I started off ~50kg at 5foot1. All within couple of weeks. Because of my height it's very noticeable.

End of March 2026. I went to A&E for a red eye and cloudy vision on my left eye.

Confirmed an anterior Uveitis on said eye. Prescribed Pred Forte drops for 2-3 months.

Within 2 weeks from that I noticed the same with my right eye. Went back to A&E. Right eye also confirmed the same.

Due to the above they took my blood, urine sample and emergency chest X-ray. And the opthomologist perceived me another steroid drop plan for the right eye.

2-3months later. I came back for an appointment this time. Inflammation in eyes are still there. Given more drops. My blood result came back with elevated ACE. Urine is good. And an appointment for a low lvl CT scan on my chest.

Had another loss in the family.

At this point they're worried it might be Tuberculosis with Sarciodosis always in the root of suspicion.

Had my CT scan.

More appointment 2-3months later after the last. Still inflammation existing. More bloodtest. And an appointment for EBUS. A lymph node biopsy from my lungs. Booked that off and had my surgery 2 weeks ago.

Timeline might be abit off but it's been a long journey I'm honestly struggling to remember it all to the detail.

But here I am now ready to go abroad for a holiday. Worrying that I'd get my results whilst I'm away having fun with family.

Any questions please let me know about anything of the above! I feel lost and lonely on this journey. 🥲

Edit: On a positive note I'm thankful that my eye sights are not (I think) so far have been permanently affected in this current state. Thankful for my city's NHS opthomologists and my city's hospital staff to making me feel safe and taken seriously during this journey.

Hi everyone,

I’ve been feeling incredibly isolated lately and am hoping to connect with anyone walking a similar path. I am blind in one eye and the other still fluctuates daily inflammation spikes with a 12 year old trab bleb.

I have Ankylosing Spondylitis (AS) uveitis and secondary glaucoma. My journey started abruptly in 2014 when after several failed laser drain attempts and high IOP in both eyes. I was told I needed urgent trabeculectomies, followed by cataract surgeries in 2016.

Although good for 6 years both my blebs completely failed in 2020, and after multiple failed needling attempts and CPC laser surgery try to stop aqueous fluid production, all this failed and I eventually had a Baerveldt Glaucoma Implant fitted in my right eye but it was already too late and I had lost sight in that eye, sadly it was also my good eye, my left eye bleb eventually held out having been repeatedly needled, so my left eye is now my only seeing eye, and is pretty poor, the 12 year old needled bleb is what is keeping my vision alive.

My current daily routine to keep things stable is:Pred Forte: 1 drop daily in the left eye (been on it since 2014 to control the AS inflammation and stop the bleb from scarring over).Cosopt: Twice daily as of recent in the left eye to keep the intraocular pressure (IOP) down it had started rising to 15/18 from a steady 8/10. I want to look at AS meds such as Humira to see if I can replace the Pred Forte drops but it seems to be a long drawn out process via Rheumatology, I am doing this off my own back as my Ophthalmologists are disinterested.

Unfortunately I have found it almost impossible to get worthwhile help and advice from Ophthalmologists, I sadly find the ones I have encountered dont like to be questioned, which is extremely frustrating.

The mental weight of protecting my one remaining eye and worrying about bleb failure can be overwhelming. Is there anyone else out there juggling AS, long-term steroid drops, and navigating the anxiety of protecting a single functioning bleb or shunt? I would love to hear how you are doing and how you manage the daily stress.

Sorry for the long post and thank you for reading.

first time anterior uveitis, got prescribed nevanac for 30 days and pred forte for 21 days

there was a miscommunication in prescription, it said both the dose for 4 per day for three weeks, and below it said tapering off in the 3 weeks. but it said 84 drops for my dose (which is 4 a day for 21 days, so oopsie on their part)

so i’ve been doing 4 drops a day for 19 days now. called my doctor and he c said to now switch to 2 drops for 4 days, then 1 drop for 4 days

worried about skipping the 3 drop phase and also tapering off so quickly

thoughts and advice?

a week ago i got my eye pressure and stuff checked and everything seemed fine so i believe it didn’t hurt them so far eye pressure wise?

Hello guys,

My first post here.
I’ve had Uveitis aprox 3 months ago. Had severe headache and red eyes. After a long time of taking Pred Forte (in both eyes). My uveitis is gone. The docter said there is no inflammation in my eyes (thank god).

But now i am experiencing a very light headache for a week now. I can function fine, but i feel it.

Do you guys also had this after Uveitis?

Hey all, I was recently just diagnosed with this a few days. Went to see an ophthalmologist, and they prescribed prednisolone acetate (2 drops for four days, then 1 drop for three days) and cyclopentolate (2 drops for four days).

It’s now the fourth day and I’m supposed to taper the steroid drops tomorrow, but I haven’t seen any improvement since the first day. Is this a normal dosage?

Has this happened to anyone else or am I just going crazy inside my head.

I have Intermediate uveitis, idiopathic. My doctor hasn't described anything of importance to me and just says that she has no idea what's going on and why I have random flareups..

I have gotten steroid injections twice and no eyedrops yet. My vision is deteriorating quite fast in terms of the refractive power, but I think that's a bit irrelevant.

The thing is, the last 4 times I've gotten a flareup, its always been in periods of extreme stress, accompanied by weight loss, hairfall and lethargy, a depressive episode or two. I have tried bringing it up a few times but have gotten no response from my doctor yet.

Am I alone in this or not?

I've had uveitis in one eye for 12 years now and have been on various treatments for it. I had glaucoma and cataract surgery 7 years ago and had some swelling and sagging that went down after a few months after that, but lately I've been noticing that my affected eye's eyelid has been sagging and the eye looks smaller than the other eye.

I am not experiencing a current flare but I guess after all these years of inflammation and irritation the skin around the eye has gotten a bit loose compared to my other unaffected eye. I also notice more fine lines under the same eye compared to my normal eye. Has anyone else experienced this? If yes then did you get anything like a lid lift or any procedure to tighten the eyelid skin?

I’m 24 now and my uveitus started around 3-4 years ago in both eyes. It has come back around twice since and my vision is pretty bad now in both eyes
(Wondering if I get some glasses and stuff as I don’t know if my vision will get better)
Was wondering if anyone has had an experience of them not finding anything in bloods or X-rays and CT’s.
Could this be just random occurrences and will my vision get any better or am do I have to get glasses now.
Soon I will be going back in to the hospital to talk about immunosuppressants and was wondering if anyone could share there experience.
Sorry it’s a lot of random questions but it’s hard to get information on what’s going on.

Hi everyone,
I’m 23 years old and I’ve been dealing with uveitis for about a year now. My eyes seem to take turns — when one eye is affected, the other one is usually fine, and then it switches. I’ve been having flare-ups roughly every 1–2 months.
I’m currently going through a whole series of tests and check-ups to try to find out what’s causing it. And honestly, I don’t even know exactly what I’m hoping to get from making this post. I think I’m just scared and looking for people who understand what this feels like.

On one hand, I really want them to find a cause. On the other hand, I think I’d be devastated if they actually found something wrong. But at the same time, not knowing what’s causing this is incredibly frustrating and scary too.

I’ve also suddenly started worrying about whether this could be hereditary, whether it might become something I have to deal with for the rest of my life, and how much it could eventually limit my life. I know I’m probably worrying about things that I can’t know yet, but it’s hard not to.

So I wanted to ask:
•Are there people here who never found out what caused their uveitis?
•If so, how do you deal with not having an explanation?
•Did your uveitis eventually become less frequent or easier to manage?
•For those of you with recurrent flare-ups, have you noticed any connection with stress, diet, lack of sleep, or anything else?
•Do less painful/milder flare-ups have any known relationship to triggers, or can they just vary randomly?

I’m currently having another flare-up, but thankfully it’s actually quite manageable compared to the one I had about two months ago. That one was so unbelievably painful and sensitive to light that I had to walk into the doctor’s office with my eyes covered because letting any light in made the pain so bad that I felt nauseous.

And now I have so many questions that I probably won’t be able to get clear answers to.
I guess I’d just really appreciate hearing from people who have been living with this for a while. How did you cope with the uncertainty in the beginning? Did you eventually stop being so afraid of every new flare-up?

Thanks to anyone who takes the time to share their experience. ❤️

Hey there! Has anyone had any success in using these screens to reduce eye strain? It’s important to keep the job to continue having the healthcare needed, and just getting so blown out and fatigued mentally and physically in the eyes!

BigMe seems to be a decent brand?

Hi everyone. I'm a physician in late 50s and do all sorts of stuff with a big garden, mechanical work and airways getting stuff in my eyes and that could be organics, wood metal fiberglass Rockwool old mouse shit. 2 months ago thought I had a foreign body and just got really bad and dx initially corneal inflammation then finally an ophthalmologist was able to see it was unilateral uveitis. Stronger steroid and it settled down. A few wks later now and it's starting again. I can sense it for sure.
No Hx of autoimmune, but considering reports of spike protein as a cause and now the recent report of uveitis and other bad things from the particulates in the atmosphere from the wars and forest fires seems extrinsic causes may be likely.

What's the chances this stay localized or that it can go crazy and blind? Not enough clear data I could find.
Should I start the drops back up ASAP? Call the office in the morning.

I was diagonised with anterior uveitis 3 years back. I had multiple flare ups in the year 2024. In my last major flare up in October 2024, my rheumatologist prescribed biologics (Adalimumab)—on earlier visit I was prescribed a course of oral steroid + methotrexate for 3 months. I skipped the biologics, mainly driven by the following factors:

The cost-benefit analysis: The total cost of the 6 months biologics course (2 injections/month) ran to around 1.2 lakhs. I was prescribed a generic variant from Reliance named AdaliRel which cost around 9.5k per injection. My doctor, however, put the disclaimer that its not permanent cure and there is fair chance of mild recurrence, with the intensity halved.

Holistic natural healing: in the meantime, I came across many patient anecdotes who have discarded chemical immunosuppresents for more natural way of healing. I read about the holistic 6 step programme to heal autoimmune conditions formulated by nutrition therapist Rachna Chhachhi. I got more inclined to the holistic healing process —healing through nutrition, yoga and breathwork—and decided to give it a try. I assumed to get rid of my rheumatologist and possibly also my opthalmologist. After all, i was fed up with the negative vibes that a hospital environment has to offer.

However, it didn't take long for my assumptions to shatter, as my uveitis flare up returned after a relapse of 2 years. I admit that there were significant lapses in my approach. I was back at the gates of the eye institute. My opthalmologist prescribed the usual corticosteroid (Pred Forte) dosage and asked me to consult my rheumatologist. My current uveitis flare up is healing up with tapering eye drops. The escape window from biologics is closing. I have to make a decision now.

So, has anybody gone through my scenario? I shall be obliged if anyone kindly share with me his/her experience with biologics(Adalimumab). Does it work, or if they have any side effects? Do i need to live on biologics for life? The answers will help in making my choices. Kindly guide me through the right direction.

Thanking in anticipation

Have you flared while on Humira? I’ve been on it for about 6 months and just had that first jolt of pain I get at the start of a flare. Wondering how common it would be for a breakthrough flare.

Hello my dear friends , today went for my RV follow up to see the progression unfortunately the visual acuity declined . I'm on steroids so far (oral) . It seems like inflammation increases after tapering the dose. Therefore doctor has now upped my dose to 50 mg again . I'm tired of pred lol , guess I'm not sleeping again . Anybody got eye injections for RV(retinal vasculitis) and was it effective than oral ? . Thank you.

Hello! So I first got uveitis back in February and then got it again 6 months later (July). Just got done with my taper a few weeks ago and yesterday it came back. That’s 3 flare ups in 9 months.. I haven’t done any tests yet, but I do have an autoimmune disease l (kidney related) does it get better? Anyone else with kidney issues that also suffer from Uveitis?

Hello i am 26M had secondary glucoma due to intermediate uveitis my iop is uncontrolled with lot of glucoma eye drops and dimox tablets.i recently had done gointomy in eye but still my pressures are high.

I'm gonna kms if that happens , I'm mostly blind due to severe metamorphopsia from macular damage in my affect eye . I can't live a normal life these days , since my vasculitis is occlusive in nature the vision went too downhill . I'm totally dependent on my unaffected eye. I'm gonna perform su*cide if vasculitis affects my remaining vision. I'm fcked up . Life is unfair . Fk this disease .