r/Uveitis

It's so depressing to be posting this but I have to feel like I'm not alone out there. It's been helpful reading everyone's stories and successes and challenges.

In May, I started seeing floaters and flashes, optometrist didn't see anything wrong but I went for a second opinion at a university eye institute and they diagnosed me with bilateral intermediate uveitis. My vision went downhill from there and I was put on 40mg prednisone, which helped for a while but I flared up again when dropping below 20mg. I'm now 6wks into 50mg Imuran and still on 15mg prednisone, and I'm feeling like my vision is getting worse. I'm trying to eat low inflammation diet but due to that and stress, I've lost 15lbs since this all started.

I can't get a clear answer on anything from my doctor other than "we have to get you off the steroids as fast as possible." I feel like he's sick of seeing me. Rheumatology and neuro haven't found any cause.

The weirdest thing is.....life doesn't stop. I am in grad school, work full-time (on a computer all day which sucks), and have 2 toddlers. I know stress doesn't help but I have to support my family. People forget I can't see well. I don't want to talk about it at work or school because I don't want to be looked at differently. But it's just so depressing.

Anyway sorry for the rant. Just here to commiserate and find some community.

Edit: 31F

Hi everyone . So people with posterior and pan uveitis with secondary complications such as macular and retinal edema . You probably have this symptom called as metamorphopsia I.e everything appears slightly wavy and bent, text appear bent and crooked , also faces are squeezed . How do you cope up with distorted vision or does it get better with the swelling reduction. Are there any ways to correct or maybe remove the distortion using any advanced optics . I have retinal vasculitis which have caused macular edema but I got only one shot which significantly reduced the distortion which I got at may 19 then the effect wore off it seems later I got edema again at end of June. Now it's just prednisolone up and down game . Also prescribed drops such as timolol to lower ocular hypertension , nepafenac to reduce pain and swelling, lubrication. Got only one injection so far , doctor said we could go for injection but let us 1st first see if vasculitis suppress with oral steroids itself but it doesn't do the job as it get tapered down even with 20 mg diff . So ig it's forever up and down game or else getting monthly injections . Main problem for me is metamorphopsia / distorted vision . I don't know how to cope with it . Also it causes straining in eyes and nauseating too. Thank you !

now what? Vision is the scariest thing to lose. I am 35 with hopefully a long life ahead of me but the internet is full of doom and gloom when talking about this. Im just looking for people who have been diagnosed with the same thing to give me some hope that im not going to lose my vision and access to all of my hobbies which need my eyes.

Hi guys, I have a chronic hypertensive uveitis and my IOP recently reached 66. After several types of drops and the Diamox meds, my eye pressure thankfully lowered! Question.. those who have taken Diamox, do you feel any super chill, lethargic, numbing and tingling feeling?? This is the first I've been given this. What did you do to function normally while on Diamox? Currently have to take 4 tabs a day which seems quiet a lot and it makes me feel too relaxed to drive or do anything else. Thanks in advance

PS. I have two kids 2 under 3 sooooo sleeping all day isn't really a choice 😂

Has anyone else on here who takes Simlandi also had issues getting their refills? I was told by CVS that there's a backorder on Simlandi right now. They told me that my doctor needed to reach out to them to find another biosimilar. After speaking with them, my doctor immediately told me that she wants to see me asap for an appointment. And mentioned nothing about any medications. My meds were supposed to be delivered today. So now i'm nervous that I'm gonna miss a bunch of doses. Was just curious if anyone else has had issues getting Simlandi or other biosimilars.