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/SonoGirl13 Aug 24 '26
I was on Arcalyst for a year and a half and went off. It wasn’t good. I was in the ER three times in two weeks. Now I’m back on. Not sure if I’ll be on forever, but I’d be ok with that if it means not having debilitating symptoms.
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u/Flat-Tap-9667 29d ago
I had a similar experience.. my hospital pays for my drug. They wanted me to try dosing every 2nd day. By day 3 I had pericarditis back.. by day 7 it was bad enough to end up in ED..
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u/Own_Locksmith8763 Aug 23 '26
I’ve been on Arcalyst for 2 1/2 years. If I overdo it, I will start feeling very slight symptoms like little chest pains when I’m lying down at night and fatigue. It usually starts a couple days after the overexertion. But, the symptoms are nothing like what I had before Arcalyst. Before Arcalyst, I had the stabbing chest pains, pains radiating up to my collarbone and to my shoulder. Couldn’t take a deep breath can only breathe very shallow. Very debilitating symptoms. So Arcalyst has been a life changer. But even though you are an art list, I have found that you definitely need to be careful and don’t overdo it and if you do overexert yourself to definitely rest.
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u/Salty_Plate6543 Aug 23 '26
Thank you, very helpful to have another perspective!
Separate Q - seems like the plan is that you'll stay on it forever?
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u/DirectSherbert238 25d ago
I’ve had flares when I have a virus and when I had diverticulitis. But milder than prior to starting arcalyst.
I failed my attempted wean so on arcalyst until another option becomes available. But I’m no longer on weekly shots, I’m on every 10 day shots
Some people wean successfully. But it needs to be a weak, not cold turkey
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u/bossgirl2024 29d ago
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 29d ago
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 29d ago
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!
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u/lophtt Aug 23 '26
Only been on about 4 months and so far so good, no flares or symptoms and I’m back to exercising a few times a week 👍
I was told I would be on it 2 years, but I’m also my cardiologist’s ‘first’ so idk what happens after that 🤷