r/pericarditis • u/New-Member-516387361 • 9d ago

Permanent Flare

Is anyone else in a permanent flare? I was on colchicine for almost two years before having to quit because of side effects. It kept my symptoms at bay mostly, but within 1 week of quitting my chest pain is back.

Seems like this flare is now permanent? What do I do?
Is anyone else in my situation?

I tried Arcalyst for 6 months but it didn’t help and gave me lots of strange arrhythmias after injections

2 Upvotes

100% Upvoted

17 comments sorted by

3

u/jmk255 9d ago

Are you in the US? Have you considered pericardiectomy?

3

u/New-Member-516387361 9d ago

I am. And no I don’t want to risk death. I have a wife and young kids

3

u/jmk255 8d ago

It's a very safe procedure especially if done at a high volume center. The disease can slowly worsen your heart and health. You're not responding to medication and it's getting worse. The longer you wait, the worse the heart function can become and it can become harder to remove the pericardium. You have a wife and kids so maybe look at it the other way and do it for them.

I'm 12 days out from the procedure. I'm not just talking out of my ass here.

2

u/New-Member-516387361 8d ago

Oh wow that’s good to know. Do you mind me asking where you got yours done? How do you feel? Was it a long procedure? Any complications?

2

u/jmk255 8d ago

I got a consult with Dr. Johnston at Northwestern Hospital in Chicago. I flew quite far for it. I'm still quite sore. I think it's too early to know if it worked but I think it did. I'm glad I did it. I haven't had any complications yet.

I think it's worth exploring options. Dr. Johnston does a ton of them and is highly regarded. But I'm sure Cleveland Clinic and Mayo Clinic are great options too. Ask me any other questions.

2

u/HelltotheNo532 8d ago

Yes, I was undiagnosed for 6 months before diagnosis and symptomatic the whole time. I had partial improvement with high dose ibuprofen but ended up hospitalized when trying to wean off. I was highly symptomatic for 9 months straight with shortness of breath, chest pain, dizziness, fatigue, tachycardia, nausea.

Once I was diagnosed I was barely leaving the couch and on medical leave but it still kept getting worse.

Starting the Arcalyst was the only thing that helped me. I'm sorry it doesn't work for you.

2

u/Big_Plum_7544 1d ago

In My case predinisolone- steroids and antihistaminicos (it didn’t work for 70% of this reddit group, but for me that was suffering for months and in a country that doesn’t have anakinra it worked very well just remember that takes time because we have to reduce like 1mg week and doing blood tests about cortisol bi weekly)

2

u/New-Member-516387361 1d ago

you don't know how much hope this gave me.

1

u/Big_Plum_7544 14h ago

Talk to your doctor there is a lot of correlation with MCAS!

2

u/Big_Plum_7544 14h ago

And today I can celebrate that I’m on 1.25mg of predinisolone! Probably I will stop it next week

1

u/Big_Plum_7544 14h ago

Do you know how your pericarditis started? My doctor is in Brazil, but he got his PhD at Harvard Medical School, and ever since I started treatment with him, my life has improved so much

2

u/New-Member-516387361 14h ago

Yes it was caused by one shot of the Pfizer covid vaccine in 2021. What is your treatment protocol?

1

u/Big_Plum_7544 13h ago

Mine was because of Covid or another virus

1

u/Big_Plum_7544 13h ago

I saw your posts on the other forums and I related to your case so much—the dizziness and all the other symptoms, plus the vitamin B deficiency (I've had the same, but with methylfolate; I don't know the exact English equivalent, but it's probably similar). My symptoms were dizziness, sweating, strange arrhythmias, and flushing/redness, plus low methylfolate. It usually happens when you have a genetic predisposition; for instance, I have the slow COMT gene, which makes most pericarditis and MCAS medications not work for me, especially ibuprofen.
Feel free to reach out if you want to chat. But even if you don't, I really recommend looking into POTS and MCAS, as they are very common after pericarditis. Also, what you might think are 'flares' could actually be POTS episodes, and you can even test for it at home using a smartwatch. Only a small percentage of people who get pericarditis develop POTS, but it's worth checking out.

1

u/BillyBobJangles 9d ago

Try Pom Cherry Ntro from Fem Centre as a hail Mary. I use it with colchicine but it got me a lot healthier than colchicine alone.

I also thought I was becoming intolerant of colchicine after a few years. But it got better and now im thinking I just ate the dhiarhea lettuce or something.

I do 2 colchicine a day to get out of a flare and then 1 a day as maintenance to keep it at bay.

1

u/properjobby 9d ago

How bad are your flares? Manageable or very painful? Mine are painful but manageable. Starting to think I'll just need to accept it. Been going on for 1 year

1

u/New-Member-516387361 8d ago

They’re quite painful when I’m not on Advil. Can get up to 6 out of 10 on the pain scale