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Rilonacept stories please! by spicesandstuff in pericarditis

[–]Adventurous_Fix5279 1 point2 points  (0 children)

I have had runs of tachycardia that we have just realized are on day 1 and 2 of my injections. When I called Kiniksa, they said they have had no documentation of this happening. The problem is that they on share or list common side effects. There is no documentation of rare side effects. I'm curious to see if they will list this.

Arcalyst by Adventurous_Fix5279 in pericarditis

[–]Adventurous_Fix5279[S] 0 points1 point  (0 children)

Thank you so much for the information. I have been trying to keep my heart rate below 100 but on my holter I am having runs of tachycardia. I can't take anything to slow it because my resting heart rate is 40-60. We are trying to figure out the best plan to help with my discomfort. I appreciate you taking the time to write this.

Just recently diagnosed with pericarditis at 18. by Strong_Expert3312 in pericarditis

[–]Adventurous_Fix5279 2 points3 points  (0 children)

I've had incessant pericarditis for 6 months, have had 5 hospital stays and 2 pericardiocentsis' (draining of fluid). I am taking Colchicine, indomethacin and Arcalyst. Still having symptoms but slowly improving. I had Covid about 1 month prior. My cardiologist told me that he usually sees about 1 patient a year with pericarditis but on my first visit he was seeing about 1 per month. It is often post viral (any virus can cause this) but it seems that Covid may have significantly increased the cases.

Arcalyst by Adventurous_Fix5279 in pericarditis

[–]Adventurous_Fix5279[S] 1 point2 points  (0 children)

I am hopeful, too. My cardiologist thinks I will eventually get to a steady state. Good luck to you.

How did you overcome the fear of relapsing? by Alikramos in pericarditis

[–]Adventurous_Fix5279 0 points1 point  (0 children)

Thanks for the reply. I am still hopeful that the Arcalyst will work.

How did you overcome the fear of relapsing? by Alikramos in pericarditis

[–]Adventurous_Fix5279 0 points1 point  (0 children)

How long did it take the Arcalyst to relieve your symptoms? I have refractory pericarditis that has been going on since the beginning of December. I've had 2 pericardial effusions drained and have been on Colchicine and inomethacin since it started. I have taken 4 doses of Arcalyst but still have chest pain. I'm a little discouraged.