u/Reality9767

Has anyone that is currently on Arcalyst, experience almost zero effect from previous doses of prednisone and colchicine?

I am 1 year into pericarditis and after 2 tries with prednisone and a year of colchicine, neither had any noticeable effect. NSAIDS reduced pain & symptoms, but never actually got rid of either. Starting Arcalyst next week and wondering if anyone else has experienced this? If so, what is your experience with Arcalyst so far?

I'm getting ready to start Arcalyst next week and have lots of questions!

1)Does anyone ever hit a blood vessel and have to discard the dose and start over? I travel internationally 3-4 weeks at a time each quarter, and I am concerned about being able to bring enough medication to accommodate a potential re-do.
2) Any recommendations for a travel storage solution? I have looked at this product: 4AllFamily Pioneer (RxCoolers Max) It appears it can hold up to 4 doses. I am usually on long haul 12hr+ flights.
3) How about the injection site inflammation? How serious is it? I see that this is the main side effect of the injection.
Thanks for any suggestions & insight!

60y old male, always have been in good shape, and (used too) exercise regularly. During a viral infection last year, I started having chest tightness/pain, shortness of breath. Weeks after the virus cleared up, I started to experience heart palpitations, and increased pain/tightness. Any exercise would make the symptoms much worse. The heart palpitations got much worse. Every 5 min or so I would feel a skipped heart beat, followed by a giant heart beat that would actually move my body. My wife is a surgeon, so there was no shortage of people to see. However, every test came back normal. No elevated C-reactive protein, chest scans normal, stress test normal, cardiac mri normal. I was able to record some of the skipping / giant heartbeats on my apple watch, and my cardiologist began to suspect pericarditis. 2 different doctors have sworn they heard very apparent heart murmurs, but nobody else did, and they are not persistent. I suspect it was a pericardial rub they were hearing, and my cardiologist confirmed these can come and go and can be hard to hear. He has never heard one while I was in his office.

Went on colchicine and high dose NSAIDS for 6 months, and saw some reduction in symptoms, but never a day when they were totally absent. Tried a 5 week prednisone course, and actually had some increased symptoms at the start, but then towards the end a few days of very low ALMOST gone symptoms. But then they returned again. It has been a full year now without a day of zero symptoms. Normally the symptoms are just a dull ache, racing heart/shortness of breath if I do minor activities, and increased chest pain symptoms - especially lying down - and if I push it too far (heart rate over 130 or so). Very classic symptoms, but no test evidence of inflammation.

I am starting Arcalyst next week, and really hope to see some improvement. Being unable to exercise, or go on hikes, play sports with my teenage son...really just enjoy a normal life has been difficult over the past year, as many of you can relate to. Also getting your head around a condition that doesn't go away on it's own, or with meds.

Is anyone dealing with all the classic symptoms, but without the test evidence? And have any of you had luck with Arcalyst?