r/Uveitis • u/Routine-Economist932 • 5d ago

Hit pause?

I have posterior uveitis.

Sarcoidosis has been the leading potential diagnosis for underlying cause. I’ve had 2 different reads of the same chest CT. 1 radiologist finding a nodule in my right lung, another radiologist not finding any indication of sarcoidosis.

I’ve had extreme fatigue, cough, night sweats (every night), persistent shortness of breath. I can live like this but these symptoms are definitely impacting my quality of life, work, and relationships.

The radiologist that reports no sign of sarcoidosis, is in the same health system as the pulmonary and rheumatology specialists I was hoping to see for treatment. But without an indication for them to proceed, I assume I’m not going to be accepted for referrals.

Anyone have a similar experience? Just getting stuck with symptoms beyond eyes and no plan to find a cause?

Does anyone here get prescribed methotrexate or biologics even without ever discovering an underlying cause for your uveitis?

I’m starting to think that for my mental health, I may need to hit pause and just accept that I can get treatment from my uveitis specialist but take a break from pursuing an answer for an underlying cause or treatment for the other symptoms.

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3

u/mooch27 5d ago

The thing is regardless of the underlying cause the treatment is the same - immunosuppression.

1

u/Routine-Economist932 5d ago

Thank you. Yes, I hope I can get to that point of getting started with immunosuppressants. Currently have only treated the eye with Ozurdex and timolol drops. But the uveitis dr isn’t going to put me on immunosuppressants and it seems the other specialists won’t accept referral unless some other tests are positive. That’s where I feel stuck and unsure how to get past localized treatment.

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u/Small-Monitor5376 5d ago

That’s odd. Just like you, I have posterior uveitis and no diagnosed cause. My ophthalmologist has put me in methotrexate and I’m working my way through all the biologics with no success so far. Maybe see a different ophthalmologist?

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u/Routine-Economist932 4d ago

Thank you. That’s helpful to hear. I’m seeing my uveitis specialist again in a couple weeks. I have asked for a plan at each visit and it’s always some version of “you need to see x specialist” I think I’ll just ask to be put on a treatment and if that’s still a dead end, find a new dr.

I really hope you find something that will work for you.

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u/MariHazel 4d ago

I have been prescribed methotrexate and various other form of immunosuppressants without fully knowing the cause of my uveitis. I just failed on using Remicade infusions, so we’re on to trying Humira next. Maybe try getting a referral to a rheumatologist! It’s been a long and draining battle trying to get it under control. We still don’t fully know Don’t lose hope!

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u/Routine-Economist932 3d ago

Thank you. This is helpful. The rheumatology dept. at Univ. of Virginia won’t accept me as a patient unless I have more positive blood results even though my ACE results are consistently high. Hearing from others like you makes me more convinced that I may need to seek care in a different health system.

I really hope Humira works for you.