I recently had a pulsed field ablation which resulted in pericarditis

@neel Thank you. I feel like we have to research and advocate for ourselves. The cardiac doctor wanted me to taper more quickly than I did and after experiencing the Flare in July and researching more - I went with the clinical research on pericarditis which is a VERY SLOW taper off one med, and then the next and then the next. Finger crossed it works once I'm off all meds. Best to you as you heal as well. And yes, God Bless you too. I had an experience after I was brought back with CPR that solidified my faith.

@red350
Agree, we have to research ourselves to get the latest medical info and taper very slowly.
Humbled to learn about about the CPR and your courage. Salute and love.

@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!

Best of luck to you as you travel and I'm so glad that rilonacept worked for you! I am off all meds except for colchicine (I need to be on that a couple of more months). I've not had any recurrence except for a July flare when I was tapering the prednisone too quickly but at that time I had a doctor telling me to just stop it at 5 mg and I knew that wasn't the way to do it so was going down 1 mg a week which was too fast. I'm very happy to be off the meds except for this last one. I'm teaching exercise again and doing progressive overload weight workouts so all in all I am feeling confident that this is behind me. With a MA in Health I've gone down the rabbit hole in research and watched all the ESC conference sessions on pericarditis, treatments, etc....In Europe they tend to give people colchicine a few weeks before cardiac surgeries to front load inflammatory support and if someone ends up with this it's aspirin or ibuprofen with colchicine continued and if that doesn't work, they add in prednisone. In the USA the thought process is to treat with Rilonacept first along with colchicine and/or ibuprofen until Rilonacept has decreased the inflammatory response. We are all so different physiologically that I suspect what works for one may or may not work for another. But I certainly have researched Rilonacept! I just hope that I am beyond it all now with labs that have been normal for over a year except for the flare in July and imaging that has always been normal after the initial effusions a year ago. I never had any pericardial fluid return after the surgery scare with tamponade. I was predominately pleural effusions. So nothing has returned and I'm optimistic that I can move on from this. Have a wonderful trip and thank you for sharing your story.

@crraining, welcome to Mayo Clinic Connect. I am glad to see you comment and connect here with red350.

I want to address your travel concerns and introduce you to @jmpuyallup who has commented about medical grade coolers for medication.

I also found some information you may want to review if you haven’t seen it:
Traveling With Medication: https://travelmedicineadvisor.com/how-to-travel-on-a-plane-with-medicine-that-needs-refrigeration/

You mention feeling good with no pain and more energy attributed to Rilonacept. How long will you need to take it?

@jlharsh
Excellent article. Very comprehensive. Worth the effort to keep PMR pain and stiffness at bay.
Jerry M

@jlharsh
Thank you for this information. I have seen much of it before, but not all. My biggest problem is that I cannot use the original packaging, as it will not fit into any of the medical coolers that I can find. I have found one that works perfectly otherwise, but I must carry the original packaging separately. Further, it is not the planes that I am worried about so much as the hotels and buses that I must travel in. Planes have power sources, but buses often do not and hotel refrigerators are not always at the specified temperature range. It's a challenge.

As for the rilonacept, I will be on it for a minimum of 2-3 years, and perhaps for life.

@crraining darn! Other ideas may be to ask your pharmacy for suggestions or consider a car cooler. Specialty pharmacies package medications that stay cool in their packaging for days. Some car coolers have ability to plug in both in the vehicle and hotel, as well as stay cool without a power source for a period of time.

I had my PFA last Thursday late afternoon and stayed overnight in recovery. My bp was low so they did a echocardiogram in the morning and found that I had some pericarditis. I was told it should just go away and I would have the echocardiogram repeated in a week and I was discharged.
I'm tired and having shortness of breath when bending over. My EP doctor called yesterday to let me know that his office would call to schedule the echocardiogram this week. I told him about the short of breath, he told me to call his cell if it gets worse.
I'm praying the pericarditis goes away!! Ughhhh......

The medicine for pericarditis you were prescribed should help ease your
pain as it did mine. I must say that recovering from a PFA does take a bit
of time according to the amount of ablations done to your heart. There were
times that I would simply stop and rest well into weeks past the PFA. I'm
told that the catheters have smaller baskets now which should be more
beneficial to both patients and electrophysiologists.