Connect
← Return to I recently had a pulsed field ablation which resulted in pericarditis
Discussion
I recently had a pulsed field ablation which resulted in pericarditis
Heart & Blood Health | Last Active: Mar 30 12:05pm | Replies (42)Comment receiving replies
@neel Thank you for asking - I am doing much better. I was on triple therapy and I am now almost off prednisone - .25 mg this upcoming week and then done. Then I taper off naproxen and then taper off the PPI and finally colchicine. I hope that it does not come back. I've researched this so much over the last year! I can't believe a year of my. life has been dealing with this but here I am. Europe gives colchicine a couple weeks before ablations and heart surgery and it shows a lot of promise in helping tamp down inflammation that can cause pericarditis. I wish I'd know that ahead of time - I would have asked to be put on it. And of course hindsight - but if they'd given me ibuprofen instead of Tylenol which does nothing for inflammation - I may have been just fine. But who knows. Water under the bridge. I hope to never have any kind of surgery again but if I do - most likely will head to Mayo, even though my electrophysiologist was the best, head of the department, excellent track record. She'd never had this happen to any of her patients. But I am doing much better, back to teaching my exercise classes and trying not to get nervous when I feel a twinge.....Best to you as you recover!
Replies to "@neel Thank you for asking - I am doing much better. I was on triple therapy..."
@red350
I had a very similar situation, only in reverse. A trace, stable pericardial effusion suddenly developed into a cardiac tamponade, for which I had a pericardiocentesis to drain the fluid. The procedure caused severe pericarditis, which became recurrent, despite double doses of colchicine, along with ibuprofen. After five months in and out of the hospital, a rheumatoid cardiologist suggested rilonacept. It made all the difference in the world for me. I have had no pain, no recurrences, and more energy than I have had in nearly nine months. If you rebound after tapering off your various meds, you may want to consider it. Rilonacept has given me my life back!
I will soon go on an international trip and need to figure out how to keep the rilonacept cool throughout the 3 weeks, while on planes and buses. So far I have been happy with my 4AllFamily Explorer cooler, but it means the vials cannot be in original packaging as required by customs in the countries I will be visiting. Does none have experience with this? Or with a larger cooler that could accommodate a 4 inch cube shaped box?
Thank you and good luck!
Connect
@red350
Hi there, I am so happy to know that you are nearing the end of this long treatment regimen. This is a a good news and brings hope to us, the pericarditis patients, who often feel little support about this from the treating EP physicians, who seem to keen to take up patients for the procedure and are little interested after pericarditis sets in.
Wish you a speedy recovery, God bless