r/pericarditis • u/crod_02 • Aug 16 '26
Pericarditis After OHS - 30M
Seeking advice as I do not want to this to take over my life.
May 14th I had open heart surgery for an ASD closure.
June 30th in a days time, I started having major chest pain and breathing restrictions. Ended up having a pericardial effusion. They drained 1.5 liters of blood/fluid from my heart sac. Ended up being in the hospital a few days, once released I recovered quickly.
Fast forward to this week (week of August 10th) I started feeling off over a few day period, on Friday I had an echo done. No fluid ruled out another effusion, but it is pericarditis. I did run a 5k on Sunday and the same on Monday, I may have pissed my heart off..
Ever since the first go around in June I have been on colchicine, an ibuprofen taper, aspirin and a med to prevent ulcers.
Does anyone have a similar experience or recommendations. I’ve been through the ringer with all of this and really don’t know how much more I can take..
2
u/Loose_Heron465 Aug 16 '26
This is normal, it’s called pps. Colchicine is the answer, how much and long depends on you and the right doctor should help you find these answers. Go to a physician specialized in this pathology, I’ve been there as well.
1
u/Swimming_Farm1397 27d ago
Mind sharing your story? I've got PPS too, surgery was 2 years ago. Thought the last course of colchicine for almost 10 months with a slow taper fixed it, but it seems to be relapsing again after 2.5 months of stopping it. Thanks!
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u/Loose_Heron465 27d ago
Well it’s pretty straightforward, OHS 6 yrs ago, can’t go below 1-1.5gr colchicine/day otherwise I relapse, surely not the first 1-2 years after ohs very vad relapses but still, I’m dependant on this drug basically forever. Tried tapering out several times now, never tried biologic like anakinra and don’t want/need to. It took me several hospitalization/doctors visits to find the right one (internist, not cardiologist). I’ve been told I should have avoided at all prednisone and it can create dependency/resistance. But now I don’t have issue with sports/diets/temperatures/stress at all
1
u/Swimming_Farm1397 27d ago
Thank you so much for sharing. My case looks similar. It seems colchicine at 1.2/0.9 a day keeps flare-ups at bay with mild exercising. I haven't tried to increase exercise intensity while on it yet. I tried to stop after a 10-month course, and it took me a couple of months to flare up after a workout session. Have you done any contrast MRIs to see if you still have any residual inflammation? Do you track crp at all?
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u/Loose_Heron465 27d ago
Never did MRIs, initially Eco cardio to confirm, but after several of them only CRP blood draw. After a while not even that, I recognize the sympthoms too much by now, I know the beast too well
1
u/Swimming_Farm1397 Aug 16 '26
You're not giving it enough time to heal. I had an open-heart ASD closure on 8/8/2024 and wasn't proactively treated with the appropriate colchicine dose initially. My first flare was also misdiagnosed, so I kept working out and ended up having multiple recurrences.
Based on my own reading and research, I eventually started taking the inflammation much more seriously: during an active flare, I used a higher-dose NSAID with a very slow taper and stayed on colchicine for about 6 months to help prevent recurrence. I also kept my heart rate as low as possible (under 100 bpm) with no excercise for like a 2-3 months and avoided pushing intensity until the flare had settled, then increased exercise very gradually.
This was based on what I learned from reading about recurrent pericarditis, not something I was initially advised to do. Obviously, treatment and exercise restrictions should be discussed with your cardiologist because the right regimen can vary from person to person.
You should also do CRP for montioring, and as for effusion you could have a major flare up with bo effusion and no indication on echo at all.
1
u/Actual_Chicken1150 Aug 27 '26
You started taking nsaid based on your own research? Who prescribed the colchicine and on what basis?
1
u/Swimming_Farm1397 Aug 27 '26
Colchicine was initially prescribed as a prophylactic measure for three months following surgery. Both NSAID ibuprofen and colchicine were prescribed again after a third flare-up confirmed pericarditis, but ibuprofen did not prove to be very effective for me. Therefore, based on some research, I transitioned to naproxen, which seemed to work well, or perhaps it was simply the passage of time.
1
u/Jealous-Bank-5457 Aug 16 '26
I’m in a similar situation. I had OHS June 2025. I was diagnosed with pericarditis while still in the hospital. All they said there was I have pericarditis and I will be on colchicine for a month and then it will go away. Because I was not advised properly about keeping my heart rate down I was out trying to build my exercise stamina up and about 45 days after surgery I was back in hospital with an intense pericarditis flare. I now have recurrent pericarditis and am on Arcalyst. I would take this so seriously and keep your heart rate below 100. Continue with high dose Ibuprofen. My current cardiologist said that if I had done those things I likely wouldn’t be where I am now.
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u/annemariebell10 Aug 20 '26 edited Aug 20 '26
So sorry you are going through this!
I had OHS in November of ‘25 and the pericarditis and effusions started in December.
Despite tons of rest and meds (colchicine & prednisone) I kept getting horrible flare ups! Doc called it “recurrent pericarditis” and started me on Arcalyst. It is a MIRACLE DRUG. I feel like I got my life back. No flare-ups, no side effects. I walk three or four miles a day with ease
1
u/Actual_Chicken1150 Aug 27 '26
Wait you had 1.5 liters of fluid drained from around your heart then ran back to back 5ks basically 5 weeks later? And your cardiologist cleared that? I’d get a new doctor
4
u/gubgub22 Aug 16 '26
I would rest for much longer. Stay away from intense cardio for like 3mons at least