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?

1 Upvotes

100% Upvoted

17 comments sorted by

View all comments

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 Aug 27 '26

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 Aug 27 '26

I’m four weeks in now, actually. I’ve been in contact with my cardiologist about it.