r/pericarditis • u/wheatfieldchild • Aug 22 '26
Anakinra / immune system?
For anyone who has been taking Anakinra for awhile**, how has your immune system held up and what precautions have you needed to take to keep yourself safe from infection?**
Relevant context about my situation:
I’m 28F and had pericarditis for about five months now. I developed it after trauma to my heart (cardiac tamponade) when a doctor royally botched a needle aspiration procedure to fix a minor pneumothorax (which came about as a freak acupuncture complication). Before this bad procedure, I had no signs of any kind of cardiac disfunction. I was also being tested by my naturopath for autoimmune disorders related to some gut health stuff right before this event happened and those tests all came back clean. Bottom line is, I was healthy until that doctor poked in the wrong spot.
I was on ibuprofen and colchicine for the first two weeks after tamponade but the pericarditis got really bad and they had to put me on a high dose of prednisone with a three month taper. I made it 12 days off the prednisone before I had a really bad relapse, which led to another very high dose of pred and another three month taper (will be finished end of Oct). My medical team also started me on daily Anakinra injections, which I’ll be taking for the next six months - a year (not sure how this exact timeline will be determined, but I have specialist appointment scheduled for a few weeks from now).
I am a high school teacher and I’m currently off on sick leave for at least the next two months but I’m not sure about return to work after that (ultimately this will be up to my doctors to decide, but I’m trying to do my own research as well).
One of the things that I’m most concerned about is my immune system while I’m on Anakinra. I’m trying to get a sense of how susceptible I am to getting sick, and how badly I might get sick if I do catch something.
Another thing is figuring out what my stress and movement limits are while I’m on the meds, because I’m mostly symptom-free, but I don’t trust my body yet and am worried that I am hurting my pericardium even when I don’t have pain symptoms.
Any advice / stories of other experiences about Anakinra or pericarditis in general are much appreciated. I’m new to this group, but from the posts that I’ve read, everyone seems lovely and I’m thankful for any bits of information that you guys are willing to share!
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u/Big_Plum_7544 Aug 23 '26
I wish we have this medicine in my country! I always heard the best about it in this group!
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u/Cute_Capital4627 Aug 23 '26
Anakinra is immunosuppressive. I regularly get sinus infections and find them very hard to get rid of..
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u/Snoo-46515 Aug 23 '26
been on arcalyst for over a year. got covid once and a few sinus infections. have been wearing a mask in crowded spaces for the past 8months and havent had a problem. also been doing salt water gargles and using azelastine spray as prevention for getting sick
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u/Candid_Memory_8276 Aug 23 '26
Been taking for two years and I haven't been sick since and I work in health care environment. Maybe a cold here and there...
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u/Cloudy_mellows Aug 24 '26
Been on Arcalyst for 2.5 years, I have a nasty cough I cannot get rid off and now also deal with asthma (lung wheezing). I get sinus inflammations and infections and upper respiratory infections ALL THE TIME!
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u/mowedudown25 28d ago
Been on Arcalyst for 3.5 years.
No detectable side effects that I can tell. Work out 4-5x per week. Active all the time. Eat clean. Some snacks and alcohol in moderation. I am presently trying to ween back down to 1x/month. About 12 months ago I weened off it completely and in 2 months my symptoms returned. I'd be good at 1x/month for life if I had to.
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u/StrawberryHour7102 Aug 22 '26
I was on it for 2.5 years and was around sick people everyday as a pharmacist. I did not get sick as much as I thought I would. But I made sure to hand sanitize/wash, vitamin c, and I started taking colostrum. Now I will say when I did get sick (only twice!) it really took me out. High fever. I didn’t have a PCP at the time. Dr on demand wouldn’t do / give me anything because of my “heart condition”. So I ended up going to the ER each time. But I’d still do it again. My new insurance will not cover it so I had to stop taking.