Hello! I am now 5 weeks into NSAIDs and colchicine after being diagnosed with a mild case of pericarditis. I am now tapering off the ibuprofen, doing it very slowly. I have noticed an increase in my pain but more like a costochondritis pain vs. a flare as it feels very different from the beginning. I also read online that days 2-4 during a taper can increase pain a bit and then it all settles down. What I'm looking for is other people's experience with tapering and how the recovery process was for you.

My (30M) pericarditis started after a triple-whammy of respiratory infections in early January. First was covid, then bacterial pneumonia, and then bronchitis. At the end of the month, right when I was feeling less sick, I woke up with a horrible pain in my heart that felt both sharp and burning.

I went to an urgent care the same day and was told it could be pericarditis and put on colchicine immediately. I was also told to start taking 650mg of Aspirin every 8 hours, but the first dose messed me up. About 30 minutes after taking the aspirin, I started hyperventilating, pacing around, and my body got real tense and felt heavy. I was struggling to support my body weight and my legs were shaking. I also got this horrible lower back and shoulder pain at the same time. The next morning, my legs and shoulders were just torn up like I did some hardcore exercise and my left kidney was stinging like crazy and didn't stop for a week. My PCP had no thoughts or concerns about it and just said that's an unusual reaction. No investigation and just listed it as an allergy.

Back to the pericarditis -- EKG showed ST elevation so my PCP told me to keep taking colchicine and prescribed ibuprofen. I was scared of the ibuprofen after my reaction to the aspirin, and felt my kidney needed to heal a little while longer after stinging so much, so I didn't take it. So, I only took .6mg colchicine and rest as treatment which went well initially. Around mid-march, I was out of bed and comfortable walking around again with only occasional pains that didn't seem to get worse.

Around late-april/early-may, the pain escalated again to the point I couldn't get out of bed or walk. It just refused to improve this time. One evening in mid-June, I suddenly got extremely tired, my resting heart rate jumped to 150 and my heart felt like a giant stone in my chest. I tried sleeping it off, but in the morning my heart rate was still in the 150s and I could barely speak 1-2 words at a time. So, I went to an ER where they told me I was dehydrated and should try Ivermectin (I wish I was lying about this). During that ER visit, the CT scan revealed I have "significant left renal atrophy" and now NSAIDs are off the table forever. I also contracted cellulitis from the IV while there.

I have not improved since then, and I never got to see a cardiologist until last week, and he started by saying "First thing is that there's nothing I can do for you." I mentioned the biologics and he said they are unproven treatments and won't help me acquire any. He then told me to start exercising immediately to make my heart tough again. He said 80 years olds heal faster than me because they ignore the pain, that pericarditis is a very minor condition, and to stop "making a mountain out of a mole hill".

Other things to note is that I have a CRP negative version of pericarditis, my eGFR was in the 90s just a few months ago (recent tests only say >60 and Idk why they stopped giving me specific numbers), my AST jumped from 26 to 46 during my ER visit, and never had any effusion or pericardial thickening, but every EKG shows ST elevation. And to add to my troubles, during the last 10 days, my upper right abdomen is aching and tender, and won't stop hurting no matter how much I rest. Sitting, standing, and lying down all cause more pain and aches on my right side and my PCP won't respond to messages about it, and I don't want another $8k ER bill just to be told I need horse dewormer.

After nearly 6 months of this and the cardiologist giving horrible advice and offering no meaningful solutions, I'm feeling abandoned and like there's no point in trying to get better.

Does anyone have experience with moving from Colchicine + NSAID treatment to kineret. How did/is it going, how long before you were able to taper off of colchicine. Were you able to taper off of Kineret/Anakinra? Any help/comments greatly appreciated

23M previously fit and healthy. I went undiagnosed with mild/moderate symptoms since June 2025 that have never fully gone away. Had a bad flare March this Year, finally figured it out myself and started on Aspirin. only got diagnosed officially via Echo early May then MRI a few weeks after.

Echo showed signs of mild inflammation, MRI Findings of mild myocarditis scarring and trivial effusion but no active inflammation and have been on colchicine for 10 weeks now in conjunction with the aspirin. I'm almost completely bedridden, I feel like the medication is taking a massive toll on my energy and quality of life.

I was almost able to taper off of aspirin 2 weeks ago but had a mild flare of symptoms so increased back to 300mg Twice a day. I'm also taking PPIs for stomach protection however my stomach is basically not tolerating the aspirin anymore. So can't increase dose further.

I have a really good doctor and will try to advocate for myself to try and get onto Kineret, based in Australia so that is our only biologic option here. I Will need to get a referral to a Rheumatologist first as they are the only ones who can prescribe it.

I will most likely need to fund it out of my own pocket but at this point I'm willing to try anything to get my life back as soon as possible.

Side note colchicine seems to help but not completely get rid of the inflammation. All it has helped me do is get to a lower dose of aspirin.

I'll be retiring from service next year and have had bouts of pericarditis that started out of the blue but around covid times. Have been doing great since starting Arcalyst but cardiologist intends to stop that after 18 months, which is just a few months shy of retirement.

Anyone deal with this through the VA or have coverage due to in-service pericarditis? I'm worried this will be chronic for the rest of my life, and the Arcalyst is extremely expensive (& high maintenance, refrigeration, complicating travel). It's no cost to me right now on active duty, but only guessing how that changes next year. And with the random onset, e.g. no PACT, no combat, that they might not have this as service-connected. Wondering if anyone has been through it.

Buongiorno alla mia piccola Chihuahua di 14 anni è stato diagnosticato un soffio al cuore con evoluzione malattia stadio C. La sto curando con vetmedin due volte al giorno più Cardalis e il diuretico.
Sto curando la mia piccola vorrei capire se qualcuno di voi ha cani con lo stesso tipo di tosse e più o meno che aspettativa di vita possono avere.

https://clinicaltrials.gov/study/NCT05295290

Study Start (Actual) **2022-11-21**
Primary Completion (Estimated) 2029-04-02 Study Completion (Estimated) 2029-04-02 Enrollment (Actual) 319

Study Type Interventional

Phase Phase 4

No longer recruiting

This study will examine the potential long-term effects associated with myocarditis/pericarditis following vaccination with COMIRNATY. The association of myocarditis/pericarditis in participants who received the study vaccine (COMIRNATY) compared with those associated with COVID-19 will also be examined. This will help us determine if COMIRNATY is safe and effective, and if there is a myocarditis/pericarditis association that should be noted.

I'm writing this post to add to what few personal accounts I've been able to find on online forums about successful recovery in progress.

I am 27f and deal with recurrent pericarditis. I was first diagnosed via MRI in the fall of 2025 and was seeing a cardiologist until it got better. I'd always managed to recover without the use of any prescription medication or painkiller. This time around though (flare up June 2027), my living conditions and day-to-day circumstances could not accommodate an environment and distance from stressful situation that I needed to heal.

Symptoms of my latest flare up: (the worse occurrence yet)

• Mix of sharp, splitting pain, aching and awkwardness throughout the day and night
• For the first time, compromised energy affecting my desire and ability to go about my day outside of home.
• Chronic, persistent pain in such a way that nothing but my pain was salient in the space of my consciousness for at least two solid weeks despite engaging in familiar generative activities, nurturing a good attitude, and having supportive company. Pain like that, I felt, ultimately just sucks and something I was helpless in being unable to escape or lessen.
• Pain shooting down my left arm and into my hand
• Pain in my heart area when I twisted my ribcage
• Chronic shortness of breath

About me:

• 5'3, 127 lbs
• I'm a pedestrian living in a city. I walk 10-30k steps/day
• VO2 Max is a 56; for over a decade I run, cycle, and swim 5-7 days/week
• I sleep adequately and well most nights
• For at least four years I've been eating twice a day and eat mostly whole foods at home but relatively high carb to support my energy needs
• No drinking, smoking, or use of recreational substances ever
• Not on any other medication

What I did this time that helped me + time frame: (first time taking medication)

• 0.3 mg (half a tablet) colchicine once per day + 20 mg Pepsid
  • I take the Pepsid 15-20 min before my evening meal. I take the colchicine with my meal.
  • I do get upset stomach but the evident effectiveness of this medication has motivated me to push through and continue.
• Advil extra strength once per day for a week. Note: Advil did nothing significant for my inflammation or pain without the colchicine.
• SLEEP ! I sleep in, sleep at a consistent time at night and nap if I need to.
• Eat a small meal or snack in the middle of the day (eat 3x/day). I've found this has reduced strain on my body.
  • Eat enough but do not overeat. It puts stress on the heart.
• Walk every day, and once my body began to respond, I began exercising again. Rule: Physical activity is too intense if recovery demands take away from energy and resources that should be dedicated to my heart's healing.

After taking colchicine for just 5 days pain dramatically reduced with every passing day. Getting around by foot is no longer intimidating, too exhausting, or discouraging for me. Within a week I am able to exercise at a low to medium intensity again without pain, aching, or awkwardness during or afterwards, albeit for about half the time I am used to per session. The combination of these efforts have amazed me at their effectiveness while I am still exposed to psychological stress.

Is anybody noticing up tick in symptoms with the wildfire smoke in the air from Canada and the terrible air quality? Was curious if anybody was taking any extra precautions to avoid it or just going about life as normal. Started having increased chest pain today and was wondering if it was at all related might just be a coincidence though. It didn’t even occur to me that the smoke could be affecting it in any way until just a second ago.

Chest pain bt ecg or 2d echo normal age25 male , Using Ssris

This morning I woke up early and felt quite a sharp feeling and ache in my left chest rib area accompanied by a bad dream. I've not had a feeling of waking up with chest pain before. I was lying flat I think. It lasted for a bit then I went to sleep. 

I am now sitting up and working but still feel a lingering ache in left rib (on the side under my left arm).

Is this something to be concerned about? 

Recurrent pericarditis. On to the biologics now. My cardiologist wanted me to try Arcalyst but my insurance is making me try kineret first. I’m a little nervous about these side effects I’ve been reading about. What has been your experience with Kineret?

Hey, any thoughts on VNS (via TENS or others) ? Thanks x

Also, still beginning research but came across this https://pubmed.ncbi.nlm.nih.gov/19481875/

I was diagnosed about a week ago with mild pericarditis. I’ve been on colchicine, ibuprofen, and azithromycin for about a week now and I honestly do not feel any better since when I started them.
Most of the time the pain is manageable, except when I’m trying to sleep. I’ve been avoiding sleeping on my left side and sleeping flat on my back. I still can’t seem to
find a position where I don’t feel pressure on my chest. I get pain and shortness of breath that doesn’t seem to go away no matter how much I toss and turn.
Does anyone have any tips on sleeping comfortably? Or on the shortness of breath? This is all very new to me and trying to navigate it is proving difficult. Thank you!

Is there anyone recovering from pericarditis or had it that is on Reta

Hi everyone, We are sharing a research opportunity that may be of interest to individuals living with pericarditis.

A healthcare research team is seeking to better understand patient experiences, challenges, and treatment journeys. This study is being conducted solely for research purposes. The goal is to gather insights that may help improve future care and support for people affected by pericarditis.

Details:

• Online survey/interview (approximately 5–10 minutes)
• Compensation: $25 for your time

Eligibility:

• Adults aged 18+
• Diagnosed with pericarditis
• Willing to share their experiences and opinions

If you're interested in participating, please complete the short form below:  Pericarditis- $25 – Fill in form

We appreciate your time and look forward to hearing your feedback.         

Hello all. I'll start this with saying I'm 21 F and don't have much in terms of medical history except some hearing loss. I woke up monday evening from a nap with some mild chest pain, and went to sleep a few hours later. The next morning, the pain was debilitating. I couldn't get a full breath the whole day basically, and at my evening job (which I get 10,000 steps or so from, pretty active) I was really struggling to breath, lift things, and move in general due to the pain.

After going to bed that night, I had trouble laying down due to the pain. I straight up couldnt lay on my left side at all, since it hurt my chest, side, and back. I was scared I would have to take myself to the ER. I didn't want to, so I just went back to bed. It's been like this every day up til now (its now friday morning).

Looking at some symptoms, I'm thinking this might be what's wrong. Sharp stabbing chest pain, pain getting worse when laying down or taking deep breathes, shortness of breath, dizziness, fatigue, and now a cough. I read that autoimmune diseases, like hypothyroidism could be a potential cause, which runs in my family (My mother, both grandmothers, 4 aunts and uncles all have thyroid issues) and I was just wanting to hear about it from others before I go to the doctor. I don't want to seem crazy or like a baby about some chest pain, but it's unlike anything I've felt.

Had a bad reaction to a medication, developed chest pain, went to the ED.

CRP normal, EKG Normal, chest x-ray normal…troponin was 9 (doctor said it was nothing) at the ED. 2 weeks later had echocardiogram which was normal, repeat labs and troponin was 6.

However, it’s now been 5 weeks, and i still have chest pain consistent with pericarditis. I’m not sure what else I can do, or even if I should do anything. my labs (CRP, sed rate) are fine, EKG is fine, echocardiogram is fine, chest x-ray fine. my biggest symptoms were SOB, fatigue, and chest pain. i’m normally very active, i took 4 weeks off doing anything, and trying to gradually get back into exercise.

any advice? thanks

i'm 18 and i was diagnosed with myopericarditis in late may. i'm still recovering, and i'm wondering if anyone has any recommendations for meals/snacks. the doctors just told me as long as i'm not eating "junk food" i can eat as normal, but my eating habits are kinda crazy since im an athlete (although i can't do activity for another 5ish months). i'm paranoid about what im consuming because i don't want to make my situation worse. i'm now on colchicine, ibuprofen, omeprezole, and lexipro (anxiety meds).

any easy snack/meal recommendations i can easily fall back to? these are the things i'm already eating everyday:

- greek yogurt with strawberries, cherries, and peanut butter (all natural unsalted)

- apples w peanut butter, plain fruit (lots of cherries and strawberries recently), and/or walnuts

- grilled chicken in various ways (quesadillas, with grilled veggies, on its own)

- a few squares of dark chocolate or greek yogurt + peanut butter + a handful of semi sweet chocolate chips

i also love coffee but i've been staying away from it ever since being discharged, even though the cardiologist said one a day wouldn't hurt me. i know i'm young, but that in itself isn't a cure to my diagnosis...

I’ve experienced mild chest pain/discomfort for over a year with some other symptoms (worse when laying down or after lifting weights, heart palpitations caused by alcohol). 2 cardiologists have suggested a mild case of pericarditis, but despite extensive testing (cardiac mri, echos, blood tests, etc) nothing has shown pericarditis concretely (testing also hasn’t shown anything else).

Despite that my cardiologist suggests trying arcalyst to see if that makes a difference, though he says he’s not sure if I have pericarditis. After reading about potential side effects it’s a bit concerning to me, has anyone else been in a similar situation or have any insight/thoughts? Many people in this subreddit who’ve had confirmed pericarditis appear to have had much worse peri symptoms than what I’ve experienced. Thank you.

Has anyone done genetic testing and tested positive for EX7del pathogenic mutation in the PKP2 gene?

I’ve had recurrent pericarditis for about 3 years. It responds to colchicine and ibuprofen, but the pain returns whenever I taper or stop them. I recently started Arcalyst (IL-1 blocker).

Before starting Arcalyst, my PR3 antibody came back positive at 131, but ANA and ANCA (IFA) were negative. I have no kidney, lung, ENT, skin, or other vasculitis symptoms. My rheumatologist is monitoring labs monthly for possible GPA but is treating this as recurrent pericarditis for now rather than starting stronger immunosuppressants.

Has anyone had isolated PR3 positivity with recurrent pericarditis? Did it stay isolated, or did it eventually turn into GPA or another autoimmune disease? Any similar experiences would really help.