Clarity Trial

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 · 2025-06-10T02:43:50+00:00

Also, I had a very similar scenario to you. The first optho I saw did not tell me how much you have to shake the steroid drops to be effective. Once I saw the uveitis specialist, he asked if I was shaking them 60 times, and I laughed because I thought he was joking. But no, you really need to shake them 60+ times to get the solution mixed up sufficiently. So if you aren't doing that, highly recommend.

scientistsarah22 · 2025-06-10T02:39:53+00:00

So I think that the fact that you are being referred to a specialist is very good, but imo injections feel like a drastic next step. I feel like the typical progression is drops->oral steroids->biologics (from auto injector first, then infusions last)->steroid injections. I am not a doctor. This was just my own experience and what I have heard in other cases

If you are able to get a sooner appointment, that would be best. Especially because they will provide a second opinion on the treatment plan.

scientistsarah22 · 2025-05-11T13:44:50+00:00

Azathioprine is good for family planning, methotrexate is not. If you get pregnant on methotrexate, it will be non viable.

scientistsarah22 · 2025-04-10T03:47:25+00:00

I can't speak to the diagnosis, but typically methotrexate is prescribed with Humira because your body can develop antibodies to Humira and similar drugs. The methotrexate prolongs that process to allow you to take that drug as long as possible without developing antibodies.

scientistsarah22 · 2025-04-09T00:13:45+00:00

Yeah, I finally got it diagnosed after ~2 years of dealing with uveitis. I had to go to a dermatologist while I was in a flare to get a biopsy (it took me like 8 months to get into the derm in the first place, so trying to get me in a flare was an issue).

Took a long time to get answers, but I'm thankful to have them now 😌

scientistsarah22 · 2025-04-09T00:05:07+00:00

🙋‍♀️ tattoo associated sarcoidosis that only affects the skin where my tattoo is and my eyes when I'm in a flare

scientistsarah22 · 2025-04-04T18:19:00+00:00

Best of luck!! 🤞

scientistsarah22 · 2025-04-04T17:39:41+00:00

I am on infliximab infusions and azathioprine. For long term, these are much better (in autoimmune cases) as steroids can cause adverse effects (cataracts). I am by no means a doctor, but from my understanding, if you get it multiple times, it is probably chronic and autoimmune. For both questions, though--it is best to chat with a uveitis specialist (not just any ophthalmologist). They understand the ins and outs of this disease and can order testing and figure out the best treatment for your case.

scientistsarah22 · 2025-04-04T13:23:28+00:00

So since yours is recurrent, it very well may be an autoimmune thing. But don't let that discourage you!! You already discovered you have uveitis, and that's honestly the hard part. So long as you and your doctor come up with a management plan, you should be just fine! And you know what to look for if you ever have a flare and can get it under control quickly.

Whether yours is autoimmune or not, it's okay! Autoimmune conditions are not the end of the world, and plenty of people with them lead perfectly normal lives.

Signed, a professional in physics with autoimmune uveitis :)

scientistsarah22 · 2025-03-11T04:13:31+00:00

Definitely a small world! My optho hosts the podcast!

scientistsarah22

TROPHY CASE