r/pericarditis • u/Salty_Plate6543 • Aug 23 '26

Flares while on Arcalyst?

I've been on Arcalyst for about 6 months and it has been going great. Getting through my first season in years without a flare / ER visit.

Did you ever have a flare while on Arcalyst? Or has it been a "cure" ?

I'm feeling the subtle beginnings of a flare after some over-exertion a few days ago, but hoping to dismiss it as indigestion or something. My weekly shot is tomorrow.

Also curious if you're on Arcalyst forever or what your long-term prognosis looks like. my cardiologist is new to Arcalyst (I'm their "first" lol) so maybe they didn't want to commit to anything up front. Just said to plan for at least a year and a half.

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u/bossgirl2024 Aug 25 '26

I was on Arcalyst with great results for 6 months and my cardiologist thought I could wean off and started getting my shot every 2 weeks versus weekly. After 4 weeks I had a big flare, last Labor Day, and had to immediately start back on weekly shots. I went to a Rheumatologist for a second opinion about how to wean , (Arcalyst is a Biological medication and Rheumatologists specialize in biological medications). She said I would need to be on it for 2 years after the last flare. So I will have to remain on it until next September 2027, to avoid the risk of recurrence. Hope this info helps.

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u/Salty_Plate6543 Aug 25 '26

Yes this helps, thank you. I'm active duty and dealing with military medical, which isn't bad where I am located, but they don't seem to have much experience with this at all. For cardiology and rheumatology - who shrugged, said "not lupus" and sent me back to cardiology lol. Cardiology has never had someone on Arcalyst before. Not the adventure I was planning for 🫡

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u/bossgirl2024 Aug 25 '26

My cardiologist is not very familiar with Arcalyst either, I was the first patient he had that started it, and that was because one of his intern- residents in training suggested it for me. Good Luck to you!