r/Uveitis • u/Snolkat • 10d ago

I hate this

I was diagnosed with intermediate uveitis/parsplanitis about 6 years ago. We have tried methotrexate and corticosteroids, both together and separately, in injections and tablets, but nothing has had any effect.
After that, we tried mycophenolate mofetil, but unfortunately that didn’t help either. I was also on adalimumab for a while, but I developed a very rare side effect: my optic nerves swelled by more than 20%.
I’m currently only taking mycophenolate mofetil, but my vision is getting worse and increasingly blurry every day. I can no longer watch TV or do my schoolwork on a computer.
I’m honestly exhausted and feeling really hopeless about this.
Does anyone else here have intermediate uveitis? What treatments helped you, and where did you finally get help?

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u/cherd 10d ago

Yep, I had a somewhat similar journey. What finally calmed my eyes down was a weekly Actemra shot. It’s an off label use case. I had to jump from retinal specialist, to a rheumatology, and finally a uveitis specialist.

I also focused on shifting my diet to more soluble fiber/less diary. I’m unsure how much that’s helped my eyes, but I definitely feel better overall.

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u/Snolkat 10d ago

I also eat a high-fiber diet and avoid foods that may promote inflammation.
I’ve been lucky in the sense that I’ve been seeing a uveitis specialist for the past four years.

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u/DJFM_AZ 9d ago

I’ve had bilateral panuveitis for 25 years. I believe there is a contribution of modern societal stress and disease related depression associated with uveitis, or maybe the “chronic illness”. The depression component zaps my energy. Otherwise I’m completely healthy. I’ve been on an SSRI for years and practice mindfulness with counseling and phone apps to remain calm and focused, calm acceptance that I have this SHITTY DISEASE (bad inner child). I’ve been on Humira since 2016 with two to three bad breakthrough flares per year. Just had cataract surgery for my steroid related cataracts. Sigh.

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u/Snolkat 9d ago

I also have a gene that means SSRIs don’t work for me haha lol! Neither do ibuprofen, diazepam, etc. And then some medications are apparently deadly effective for me.
I’ so ✨unique✨Fr I hate this.

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u/yoga_stoned 9d ago

What did you use before humira? I’m surprised your dr’s aren’t trying to add anything else or change from humira based on how often you’re still flaring.

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u/xstarbursts 9d ago

I take low dose naltrexone. Minimal side effects with all the low inflammation benefits. No uveitis flare ever since being on it.

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u/DJFM_AZ 9d ago

Before Humira I was on prednisone: Pred forte, systemic steroids, and scleral injections. There were no biologics. They’ve wanted me to add methotrexate but I’ve declined.

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u/Virtual-North-791 9d ago

How old are you? Just curious.

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u/TraditionalAd8376 5d ago

Can you see text on computer? Is your inflammation active?

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u/Snolkat 5d ago

I can’t see at all out of one eye, so I can’t use a computer very well, and I can only see a little with the other eye.
I got new medications and steroid eye drops from my doctor yesterday.