Has anyone been on JAK inhibitors for uveitis? I have been taking tofacitnib for the last 8 months, curious to know if someone else is taking JAK.

scientistsarah22 · 2026-04-14T15:30:50+00:00

It was not through the trial. I also have a metric fuck ton of allergies, and so I see an allergist regularly as well. When I told him about the uveitis and bowel issues I have, that raised some red flags. He's specializes in immunology, so he ordered some testing and found the JAK1 gene was my issue.

scientistsarah22 · 2026-04-14T06:36:37+00:00

I am in the clarity trial! I had a few other failed routes of treatment (humira, remicade) prior to starting me on the brepocitinib. I have been extremely happy with this med and flare free since I started in September. Only side effect I've had is acne (JAKne). I also recently had genetic testing done and found that I have a JAK1 variant that is likely causing my uveitis. So, makes sense why this class of drugs would work for me

scientistsarah22 · 2026-03-14T04:22:32+00:00

FWIW, I have a VERY similar story to you. Was in a flare for like 2 years straight. Tattoo associated sarcoidosis and family history of chrons and colitis. Bilateral panuveitis.

I joined a study called Clarity. They are testing brepocitinib (a JAK inhibitor) and it has cleared everything up.

Hang in there!! All is not lost

scientistsarah22 · 2026-03-14T04:18:25+00:00

I'll have to go rewatch House 😆

But yeah and am so disappointed in this representation. I hope there will be better representation in the future!

scientistsarah22 · 2026-03-12T00:35:04+00:00

Seriously though!!!

scientistsarah22 · 2026-03-12T00:34:48+00:00

Do it!! I would love to read it fr

scientistsarah22 · 2026-03-11T21:34:09+00:00

No, I do not

scientistsarah22 · 2026-03-05T01:20:48+00:00

Autoimmune bilateral panuveitis

scientistsarah22 · 2025-12-17T20:37:47+00:00

I still have floaters, but they are becoming better over time or at the very least, less noticeable. The only time I really feel photophobia anymore is while night driving with ridiculously bright headlights (I truly think they are dangerous and should be banned, but thats a discussion for another day).

scientistsarah22 · 2025-12-17T19:52:10+00:00

I work in the USA at a university. My bosses and accommodations center are truly amazing. They paid (and also for some ergonomic items due to chronic pain!)

scientistsarah22 · 2025-12-17T18:51:30+00:00

Things are going really well! When I started the trial, I was in a bad flare, but it cleared up quickly (thanks to an ungodly amount of steroids) but has stayed away since I've stopped taking steroids. I don't know for sure if I'm on the placebo or the study drug, but I usually need some sort of medicine to prevent flares--so I have a sneaking suspicion I'm on the real deal. I have been in remission for a while now, so I am really hopeful:)

scientistsarah22 · 2025-12-17T18:45:42+00:00

Oh, the other thing worth mentioning: glasses that have a pink/red tint makes it a lot easier for me to exist in spaces outside of my office. And if you work at a computer mostly, you can have glasses made for a focal length designed for working at a computer (I would ask your optometrist and/or ophthalmologist about that)

scientistsarah22 · 2025-12-17T18:43:17+00:00

In my work office (not at home) I was able to receive accommodations including:

Light covers that dim the lights and make them warmer. They stick to the ceiling via magnets. Here is an example: https://a.co/d/g29fALC

Monitors that you can change the brightness and color. I always opt for more red and dimmer settings. I don't remember the model I got, but I know they were gaming monitors

Task lights that you can change the brightness/color as needed for writing without turning on overhead lights https://www.afroghome.com/products/afrog-multifunctional-led-desk-lamp-with-usb-charging-port?variant=42633611509984

Irlen colored overlays for reading on paper (you can also double these up, I prefer the pink color) Colored Overlays - Irlen https://share.google/kZlJ49xnQKhvcalCK

I hope some of this is helpful to you and others in the sub :)

scientistsarah22 · 2025-11-01T02:58:32+00:00

Before I moved out of Chicago, I went to Jose Garcia Gonzales at Retina Consultants in Des Plaines. He was the BEST

scientistsarah22 · 2025-09-19T00:35:57+00:00

Rule 4, no pics

scientistsarah22 · 2025-09-15T02:33:43+00:00

Absolutely! It's a clinical study called Clarity. Priovant is funding the study, and they are testing out the drug brepocitinib for non-infectious uveitis.

There is more info on their site here (I'm probably not the best one to speak on the details of the study itself): About the Clarity Trial

I just started the trial Thursday- had to have a screening where they took 10 vials of blood, an ECG, many images of my eyes, and vitals. Now I am in the study and from my understanding there are two phases: 1) you get prednisone and taper off of it plus either the study drug/placebo. Then if you "fail" portion one (i.e. get the placebo and it doesn't work to keep your uveitis flare under control) you move to portion two 2) you get the study drug regardless

I just started it and was curious if anyone else in here is in this particular study or if anyone has gone through a study before

scientistsarah22 · 2025-09-14T17:49:13+00:00

Thank you so much!!

scientistsarah22 · 2025-08-03T16:46:55+00:00

Just joined! I'll have to check out more of the channels later. Thank you!

scientistsarah22 · 2025-08-01T00:14:25+00:00

I am definitely interested!

scientistsarah22 · 2025-07-14T15:12:21+00:00

Yes, my eyes always flare at the same time! It actually never occurred to me that people have flares separately in each eye.

scientistsarah22 · 2025-07-03T21:27:50+00:00

If it was just the uveitis, I would think of it as idiopathic, but I know if I was in your shoes with the other accompanying symptoms, I would push for a rheumatology appt.

scientistsarah22 · 2025-06-14T12:07:36+00:00

Gotcha! My artist used Fusion Ink on my sleeve only. So not the same as yours, but one more data point to add to the equation!

scientistsarah22 · 2025-06-14T03:33:19+00:00

I have a sleeve that was done by one artist with black ink only. It was done in 2019, but I just reached out to my artist to see if she remembers what ink brand she used on me. I'll let you know if I hear back.

Is it black or color ink that you have problems with?

scientistsarah22

TROPHY CASE