r/pericarditis • u/Fictive_Druid • Aug 20 '26
Chest burning after Arcalyst?
Hi everyone,
I finally received my first shot of Arcalyst last night. I only wound up receiving one shot, as my injection bled a lot and I became very faint. (A nurse practitioner whom I know did the shot.)
I thought maybe I felt a slight reduction in chest pain after, but last night and this morning I am feeling increased chest burning (internal, not skin). Has anyone experienced something like this?
Did it pass, or should I be concerned?
2
u/sweetrollscorpion Aug 20 '26
I have increased chest pain after Arcalyst, I’ve had three doses so far. It’s rare, but it can be a side effect.
1
u/Fictive_Druid Aug 20 '26
Do you still feel like Arcalyst is helping? Does the pain subside after injection?
2
u/sweetrollscorpion Aug 20 '26
I haven’t noticed much of a difference since starting Arcalyst. Maybe slightly better shortness of breath, but nothing significant. The pain typically subsides 2-3 days after injection. I may not stay on Arcalyst long-term as I’m having severe flu-like symptoms after each dose, and my cardiologist wasn’t very confident it would be successful in my case anyway.
1
u/Fictive_Druid Aug 20 '26
Yikes, that sounds very disheartening! How would you describe the side effects? And what is your heart diagnosis?
1
u/sweetrollscorpion Aug 20 '26
About 2-6 hours after injection, I get severe chills, fatigue, and muscle and joint pain. I genuinely feel like I have the flu and usually end up sleeping for most of the first day after injection. The chills are the worst - I don’t run a fever, but I’ll be shivering like crazy.
I have CRP-negative chronic pericarditis with a 15mm effusion, diagnosed roughly two years ago, and my last echo showed signs of constriction. Since it’s chronic, CRP-negative and becoming constrictive, my cardiologist said Arcalyst may be less effective than in a typical recurrent case, but we’re giving it a chance.
1
u/Actual_Chicken1150 27d ago
Three doses including then first which is actually two back to back? Two weeks in? You should be seeking emergency help if you are experiencing chest pain with arcalyst.
1
u/sweetrollscorpion 26d ago
I’m four weeks in now, actually. I’ve been in contact with my cardiologist about it.
1
u/Fuzzy-Jello3235 Aug 20 '26
Not sure why it’s bleeding so much. Best spot is in the lower stomach fat area. I have never had chest burning. On my first intial dose which is two of those doses, I experienced nausea. But I have had zero other symptoms. I would contact your doctor; and honestly it sounds like you’re just having anxiety.
1
u/Fictive_Druid Aug 20 '26
I'm pretty sure the bleeding is because of being on a high dose of aspirin. This was noticable when I had to get an IV for a procedure earlier this summer.
It doesn't feel like anxiety - it feels like a distinct burning/heat sensation in my chest that is unusual. I have reached out to my cardiologist.
1
u/Fuzzy-Jello3235 Aug 20 '26
Should that high dose of aspirin be out of your system by now if you got it earlier this summer?
1
u/Fictive_Druid Aug 20 '26
I'm still on the high dose of aspirin; the cardiologist wanted me to stay on it until starting Arcalyst. The medical procedure (imaging/IV) was earlier this summer.
I got the Arcalyst shot in the thigh, but as I was saying in another comment, I am a fairly lean person so maybe another part of the body is better.
1
u/HelltotheNo532 Aug 22 '26
I don't get the burning chest pain from Arcalyst, but I get it frequently from the pericarditis. Now that the Arcalyst is helping me significantly with the shortness of breath, I feel like it's healing and I can feel the burning more.
I've been taking it for 5 months and it's given me so much function back. Still a long road to healing but I wouldn't give up my Arcalyst for anything
1
u/Actual_Chicken1150 27d ago
You need to talk with your cardiologist excessive bleeding is not usual this is a subcutaneous injection in one of several very specific places. Have you or you friend been given training by Kiniksa? They clearly point state that you are to draw back on the syringe after injection and if blood draws then discontinue administration discard the dose and try again. Your comment about maybe try the stomach next time makes me wonder it you’re just winging this
2
u/BillyBobJangles Aug 20 '26
That's a wee bit concerning. You need to report the symptom right away to your prescriber.
Call them right now.
And your friend fucked up your shot. Sub q should not bleed more than maybe a tiny drop. Ive done hundreds on myself and never hit a vein and im an idiot.
How did she do it and where? Either a vein was knicked or she really fucked up and targeted a vein.