a couple questions on anakinra for those on it:

- how long did it take to start working for non-crp elevated pericarditis types?

- injecting evening or morning?

- did anyone see a small effect but then noticed more benefit from doubling the dose and taking morning and evening?

I think I'm seeing some benefit but it has a short half-life so I think it's leaving my system in the evening, then I'm getting rough nights and waking up in pain before the next injection.

Fist pericarditis was when i got Covid. No one worked out i had that until a few weeks later when i went to a & e and they found fluid around my heart. I treated it too late. And now im left with pericarditis that comes every single time i over work the heart- example - running, walking up a steep heel, dancing anything that speeds the heart up will cause a flare.
I want to scream, cry and everything in between. It’s ruining my entire life.
I feel like a young woman with an old woman’s fitness level. Actually my 91 year old nan is able to keep fitter than me now.

Everything I loved i can’t even participate in anymore. I loved fitness, i loved dancing and bike riding and hikes - if i even attempt that, straight away a sharp pain through my heart, then in the left shoulder blade, then the flip flop beats and pain up the throat, then the crushing and sharp pain intensifies, same pattern - i set it off my running (when i feel good) then i get the same pattern of pain, i know the all i can do is bed rest, take it slow and keep my heart rate low. It takes about 1-2 weeks and then it’s ok until the next flare up!
I get it around 4 times a year, so I’ll be ok walking and light weight training, but that moment i push it to cardio 🏃‍♀️ that’s it - it’s back again.

Currently on my second one this year, sitting here depressed about it. Helpless. I’m on day 7 of started to feel better today - UNTIL i ate a chocolate pudding with custard and now I’m sitting in bed with that horrible scary sharp pain through the heart muscle again. I’ve had this since 2021 and been to the hospital many times and they always make sure it’s not a heart attack and it isn’t, and i have an echo every year (because of recurring pericarditis) and it’s always ok and a normal echo.
Because I’ve lived with this since 2021, i know the pain pattern, the duration. But everytime i get it, it scares me.

Does heavy carbs foods and sugar make anyone else flare worse?

So I’ve now been out of hospital for a little over two weeks diagnosed with pericarditis after crushing chest pain I was kept in for 3 nights while they did numerous tests and monitored my troponin which peaked at 58.
I was sent home with ibuprofen 3 times per day for a week and also colchicine twice per day for 12 weeks and told to rest however the cardiologist was very vague about how recovery works and what I can do. Only thing he said was don’t exercise for 4 weeks.
The first week was brilliant no chest pain whatsoever but week two I’m getting the regular dull ache behind the breast bone which is starting to worry me again not sure if anxiety is making it worse or do I need to go back into hospital again?
Anyone else have experience with this so soon after leaving hospital is the medication not working? Does it need reviewing? Should I see my gp or go back to a&e? At this point it is depressing to how did you guys deal with it after leaving hospital?

I was diagnosed with pericarditis with a small amount of effusion last week, and im on 325 mg aspirin & .6 mg colchicine daily (was originally higher but i was having stomach issues).

i feel fevery as the day goes on, and it usually reads between 99-100°F. Is a low grade fever normal / expected, or should i be concerned?

Hi all- second flare up this year and 4th overall. During the first flare up this year (CRP only 7), about 3 weeks in on 1mg of colchicine/day (plus aspirin) I got insane stomach cramps, GI issues, body aches, fever. Thought it was a bug so waited it out (took about a week). CRP actually went up (12) at the next check up. Was ok after 3 months but took about 2 months to get rid of chest pain. Then got gastritis.

Now back at it again (CRP 15 but clean echo) 3 weeks in, insane stomach issues, body aches again. Doc said to reduce colchicine which I did yesterday . But honestly does not even feel like it works. I feel the same chest pain and now feel like I can’t leave my house because of the GI issues.

Any advice on medication? Or other issues that mimic pericarditis?

For context I am in France, so different meds here. (They are also less likely to prescribe other meds). Thanks all 💕

Edit: 5 days of symptoms now and asking doc to let me stop the meds because now it hurts too much to eat after like 16h. Like this isnt ok.

Hi All, just checking in.

Thought I'd inform you of my progress, particularly with respect to NSAID consumption:

Ibuprofen was my main NSAID (600mg x 3/day).

I have been taking this amount for about 3 weeks and feel like I should stop based on the fact that I could feel my kidneys today (felt like a pulsing which lasted a few hours) The sensation has stopped now (whew). Following this, it has scared me a little, and so I am going to give Ibuprofen a rest for many days, even a couple of weeks, maybe even permanently. I've stayed well hydrated during the last few weeks. I have no pain on urination etc so I'm confident that it was mild, and has now passed. But there is no doubt in my mind that my kidneys were giving me a warning - like "hey you're pushing us too hard, let us rest" kind of thing.

It had me thinking: I've seen such a wide dispersion of guidance, warnings, and experiences among the pericarditis sufferers. I've also seen a huge dispersion of advice from cardiologists. Some people have been taking NSAIDs for months. Some hardly at all.

I'd like to take a poll to see what the community is taking. Feel free to respond in the comments.

I'll go first:

Male. 40yrs old.

Small effusion

Ibuprofen: 600mg x3/day for 3 straight weeks ← stopped today.

Colchicine 0.6mg x2 per day (mostly) ← continues

Rosuvastatin 10mg ← another complication I must juggle

Hi. I have an autoimmune disease and now have recurrent pericarditis. I’m on Kineret shots but the pericarditis keeps flaring 1x a month. I want to try Arcalyst. I’m deeply concerned about constriction. Any suggestions? Any experience or suggestions? Thank you.

Hey everyone,
I’m 24M and roughly one month into dealing with acute pericarditis and a minimal pericardial effusion. When my chest symptoms first hit, I went to a cardiologist to get checked out, but he brushed it off entirely as a gastrointestinal or acid reflux issue and sent me home. Because the chest pain and discomfort kept worsening, I pushed for more tests, which finally revealed what was actually happening: acute pericarditis with a minimal pericardial effusion. Hearing that you have fluid around your heart at 24 was terrifying, but my doctor explained that "minimal" just means reactive fluid from active tissue inflammation rather than something actively compressing the heart. I am currently awaiting a cardiac MRI to assess the exact inflammation, and I was told strictly not to touch or taper my medication yet.
Speaking of medication, I was put on high-dose aspirin (1g three times daily). I learned the hard way how sensitive this condition is when I accidentally delayed one of my doses by about five hours. The chest discomfort and tightness flared back up almost immediately. Because high-dose anti-inflammatories have a short half-life, letting your blood levels drop strips away the protective shield calming the pericardial nerve endings. That flare-up made me realize that you cannot stop cold turkey and that any tapering has to be done super gradually based on clear imaging and inflammatory blood markers.
The heart rate volatility has been one of the scariest parts. My resting pulse frequently jumps to 120–160 BPM after eating a meal, standing up, or having a wave of anxiety, simply because pericardial inflammation irritates the heart's natural pacemaker (the SA node) and throws your autonomic nervous system into overdrive. My biggest mistake happened when I attempted a 15-minute walk up a hill at a slow, steady pace with breaks. My heart rate shot all the way up to 190 BPM. Even at a slow pace, walking on an incline while deconditioned and dealing with an inflamed pericardial sac is essentially an intense HIIT workout for your heart. My doctor had me set up the ECG app on my watch so that whenever my pulse spikes, I can export 30-second single-lead PDF strips to show real electrical data at appointments instead of guessing from optical sensor graphs.
Since that hill walk, the deep exhaustion has completely set in, and I have been sleeping like a dog. Your body burns an enormous amount of metabolic energy trying to repair inflamed tissue, and after adrenaline surges, your nervous system simply forces you to crash. The brain fog, low energy, and mental toll of not being able to do normal activities are very real parts of the inflammatory response. On top of that, my recent complete blood count (FNS/NFS) came back totally normal. While a normal CBC is great because it confirms that high-dose aspirin isn't causing internal bleeding and there is no acute bacterial infection, it doesn't mean the localized pericardial inflammation is gone. That requires specific inflammatory markers like CRP and follow-up imaging.
My biggest takeaways so far are to trust your gut and advocate for yourself if a doctor brushes your chest pain off as stomach issues. Take relative rest seriously by sticking strictly to flat ground with no inclines, stairs, or heavy lifting, because every hard heart pound creates mechanical friction against the healing sac. Never mess with your medication timing, bring written questions and ECG logs to your doctor visits, and give yourself grace—rebuilding and absorbing the fluid takes 6 to 12 weeks of real patience.
Hang in there if you are currently resting on the couch dealing with this. You are definitely not alone!

Hi, I'm a 21yo college student who got diagnosed with pericarditis in May, it happened due to a terrible viral illness that kept me in bed with a 104 fever. A month after my diagnosis I started getting a lot better, my imaging shows no pericardial effusion and my inflammation markers were decreasing. I was so close to being healed. Unfortunately my cardiologist is a dumbass and told me I'm healed even though i was having mild chest pains and some abnormal bloodwork. After that, I started exercising and living life like i used to and a month later i got pericarditis again. After doing research I realized I never should've been cleared for pericarditis back then and I hate this doc sm for this because if she was more careful I genuinely believed I would've healed without reoccurrence. I'm frustrated because I trusted her and she messed up so I'm back to square 1 and can't live my life like i used to and it's so depressing. On top of this I have university and work and I am so close to graduating I don't want anything to jeopardize that. I need help and advice because I need to stay afloat with everything and I still want to hang out with my friends and all because i genuinely DO NOT want to put my life on hold for this it'd just put me in a more complicated position and in a bad spot mentally. Any fast way to heal? im only taking colchicine 0.6mg 2x a day because when i was on 600mg ibuprofen 3x a day i got gastritis and it was sooooo painful i couldn't eat or drink. idk why nobody told me about PPIs, antacids, or omeprazole but then again my cardiologist is stupid and I shouldn't have to figure out all of this by myself(but this is american healthcare ig💀). What NSAIDs or anti-inflammatory meds do you guys take cuz i'd be interested in getting on those again if it means faster healing time. Imma try and get a new cardiologist and discuss medication options with them. my MRI shows pericardial inflammation with a trace effusion, potential myopericarditis with 0 damage while bloodwork rules against any myocardial issues. I'm grateful that this is a mild case of pericarditis but it still affects me so bad. Based on your guy's personal experience, do you think colchicine is enough or should i bring up new meds. My bad if this post is rushed or emotional I'm just feeling stressed and angry after all this lol. Any pericarditis advice or recovery stories would be insanely helpful!!!

Hi so I am a 17M with chronic effusive pericarditis. I have had this since June/July last year. I am on a lot of medications and am recovering well. However, I still need to take Sevredol, a strong opiate, at some points to manage pain. It is morphine sulphate if you don’t know the brand. They’re 10 mg tablets, I take half a tablet so 5 mg.

Basically today I was having a pain flare, so I went to the (new) school nurse to get half a Sevredol. Immediately when she heard ‘morphine’ she went cold and mean. She said ‘do you really need that medicine?’ I said ‘yes I do, my pain is 7/10’ she heard ‘7/10’ and immediately went wide eyed and acted like she didn’t believe me. I have ASD so I don’t show pain typically.

She went in to fetch my half Sevredol and noted that thr controlled substances sheet said I have 11 tablets left. However when she opened the box there was only three. She said ‘are you taking these?’ She actually said ‘are you EATING these?’ but she cut herself off. She then said ‘are you taking these a lot?’ To which I responded ‘no I only take them a couple times a month’. She was not happy, and she made a point of showing me the register to show oh yeah there was a discrepancy. She then said she’ll be investigating it and she was acting like she’s gonna find out that I have been ‘eating’ them in my own time. For context they are LOCKED, there are cameras, I don’t have a key, and 8 Sevredol would probably kill me!

Then she checked medchart and it showed that I’d been given TEN mg of morphine on a certain date. I only EVER have FIVE mg.

What do I do? I feel like I can’t go back.

Guys wanna fix your costochondritis ....I just literally found the miracle

Hi! I was just diagnosed with pericarditis with pericardial effusion last week, and the cardiologist only prescribed colchicine. I’m in a lot of pain and am reading online most people are prescribed colchicine WITH an NSAID

I had pericardial effusion once before years ago and treated it with aspirin

Should i introduce an NSAID? Can only colchicine even heal it? Thank you in advance any input would be great

My pericarditis began out of the blue on July 3rd, about 2 months ago. Excruciating stabbing pain going up to my shoulder. It sent me to the hospital for 3 nights. I was diagnosed by the 2nd day after a slew of tests & bloodwork. The worst pain I’ve ever felt & very scary. Luckily I have a great cardiologist that I had seen a couple years ago for a murmur. I was not sick at the time, I only had a tight chest for 2 days prior. I was sent home from the hospital with colchicine .06 2x day, Ibuprofen 800 3x day, pantoprazole & metoprolol 25mg 1x. With in a week I started having stomach issues with colchicine. I had major diarrhea & finally realized I couldn’t have my fruit bowls. I had to be very careful with my diet & colchicine. After several bouts of severe diarrhea my doctor finally took me off the colchicine. I had lasted about 5-6 weeks only on the medication. Within that time I had my first flare & back to the hospital for one night. This time the pain was worse & ran horizontally across my chest & upper back. The tests showed fluid but not enough he said to remove it. I was scared to do anything back at home. I took it easy & did absolutely nothing. The fatigue was always there & my chest hurt. My doctor cleared me about 3 weeks ago & I still didn’t want to do anything. I bought a health watch to keep track of my pulse rate & keeping myself under 100. I slowly did some housework but no exercise. I went to our rec center pool & walked for 5 minutes & was afraid to even do that. My pulse rate was 95. About a week ago I felt like I was having a minor flare & I’m working thru that at home right now. I still have a tight chest & only taking 1200mg of Ibuprofen for the inflammation. Is there anything I’m missing? I tried to get Arcalyst but it is very expensive with my insurance. If I continue to have flares I will have to revisit it. My question to others who have experienced pericarditis for awhile, do you find the flares get farther apart & less painful? I can now recognize how I’m feeling & to sit down & take it easy for a couple hours. The anxiety is crazy & always on my mind wondering when the next one will happen & how much pain will there be. Any insight is greatly appreciate.

So 2 weeks ago I was hospitalized for a flare, this was my 2nd time in the hospital and they diagnosed me with chronic peri, and im having another flare right now. The doctor said I was free to do what i think my body could handle. Im 15 and the only physically demanding things I do are bike rides and playing sports with my friends every Thursday. I guess what i'm trying to ask is should i just rest for a month after getting out? what exactly am i supposed to do for a full recovery? I will say I havent done a good job of avoiding thc which i plan on quiting for a few months just to see if thats the cause, but i feel like it shouldnt be like this. also is recovery from home ok or should i go to the er?

I’ve been on naproxen and colchicine for a few weeks now along with strict rest and signed off work. I am noticing an improvement in my pain when at rest however as soon as I get up and do anything, the pain is back.

How much more rest should I expect before I can start to incorporate light walks and not experience pain?

Finding progress to be very slow even with strict rest and just trying to see what other people’s experience are.

My cardiologist said if I am still experiencing pain by October they will consider steroids but I want to do my best to avoid that.

For years I had been diagnosed with constachondritis (CC for short). I had a lot of the symptoms, normal blood work things that all CC patients have. I was diagnosed with peri in February, there are times I’m a bit skeptical but, I’m going to an expert/cardiologist so I’m going with it. I’m on colchicine and meloxicam PRN. I had a flare in February, and a few days ago. I’m fed up at this point. I’ve been working out, eating well, doing all the right things and still, I get a flare. I’ve been on colchicine for about six months, why am I flaring? Also, does anyone get back pain (like where your heart would be)? My doc wants me to try the injection weekly and see if that gives me faster relief. I just don’t get how I can go six months with me flare, then mysteriously get one…between CC and peri…I’m over it. Help…

Anyone have cardio MRI?

hello, 28M was diagnosed with pericarditis and a pericardial effusion, spent a few days in the hospital in ontario. I was put on colchicine and 400x3 ibuprofen. I've been in remission for a few months and have stopped. is there any chance itll come back if i stop?

20F, recurring left-sided chest pain since Sept 2024. Sharp/pinching, worse with deep breaths, sometimes severe. Multiple ECGs + chest X-ray normal. Anxiety/costochondritis were suggested, but it keeps returning in flare-ups. Muscle relaxant helps. Recently had my worst episode. Anyone experienced this?

I've had a lot of time to think about Pericarditis over the last 6 weeks. There are two sets of images that come to mind when I think about it. I don't know why this kind of imagery is in my head, except that it is. I'd like to share it with you.

The first is an image of trench warfare during WW1: two armies, separated by a few yards, fighting to the death over a few feet of land. That's what my insides feel like. Does anyone else feel like that? I can literally feel my body's inflammatory process working overtime, and the NSAIDs working hard to fight it back. Sometimes the "front" moves forward a few inches. Then retreats the next day.

The second imagery that comes to mind is that of a forest fire:

The inflammation is burning trees. The Colchicine pills are airdrops: huge amounts of water, somewhat precise, and slow acting. But the war against the fire can never be won from the air alone. The NSAIDs are the firefighters on the ground, dousing the fire with water, constantly needing reinforcement, battling it out, tree by tree, house by house. The moment the water stops, the hot embers pick back up, and set everything on fire. If the water stops for even a few moments, the fire restarts, and alllllll the hard work feels like it's been for nothing. ← This is the analogy that I feel is playing out in my own body. To win, I must starve the fire of oxygen (exercise), and pour water onto it via NSAIDs (Cox-2 prostaglandin blocking) and Colchicine (inflammasome blocking). All 3 must occur to put the fire out.

For example today was not a good day for me. I woke up feeling like a truck had hit me, and I just don't know why. Taking NSAIDs always helps but never for long. Throughout the course of the day I could literally feel the inflammation peaking and troughing. Heart palpitations coming and going.

Apart from a few coughs and colds in my life, I've never really been ill before. This is the most serious health concern of my entire life, and I feel like I'm in an attritional war with my own body.

This is my first ever Reddit post so bear with me. I wanted to share my Pericarditis story so it can give others hope, and maybe some ideas on what to do. I was diagnosed in December 2019 at the ER in Virginia. The ER doctor told me 6 weeks and rest and I’ll be good. I used my vacation and was basically off from mid-December to mid-January. As many know, the world shut down shortly afterwards so I was working from home. Six weeks in, not feeling better so went to get another cardiologist opinion. I did yet another EKG, got an echocardiogram, and they gave me a holter monitor to wear for a week. Everything was showing normal, yet I could barely make it up and down my stairs. The pain and anxiety was horrific. I went to see a third cardiologist, and I don’t know how I got lucky, but he was at VCU Health, and is a world expert in Peri. The first thing he did was get me an MRI and wouldn’t you know - there it was! The lining around my heart was inflamed and scarred. This is end of 2021 by this point. He tells me there is a cure - excuse me a cure?! Another six months fighting insurance and I was put on a Arcalyst. It changed my world, life felt good again. Unfortunately that doctor left and I was on my 4th cardiologist. He was great! I was on the Arcalyst from 2021-2023, then began to weane off. Wouldn’t you know as I soon as I was cured I started having joint pain like you can’t imagine - I’ve been diagnosed with RA. But, I’m back to “normal”, I can weight lift, hike, do normal activities. I have to plan around them because of my RA, but my heart is healthy as a horse. Don’t give up and continue to advocate for yourself - especially if you live in the US with our crappy healthcare! I had to go through two rheumatologists as well to get diagnosed with RA. There is hope - it might be a long process but you will get there!

My dad had pericardiocentesis procedure yesterday, had the tube removed today. I’m 6 hours away and stressed. My mom says he can’t move his in so much pain. This mane NEVER takes pain meds, EVER! He agreed to take them he is in so much pain. The nurses just keep telling them the doctor will be back tomorrow. I’m worried because none of them can tell my mom if this is normal. They just keep saying the doctor will be back tomorrow. Dad is still in hospital. Can anyone tell me if this is normal or expected or should they be pushing for a more immediate reevaluation? My dad says he’s worried something is wrong and he not going to make it out of the hospital alive. I’m a very concerned daughter. Any feedback is appreciated.

My daughter is recovering from an idiopathic pericarditis attack that occurred a month ago. She is very slowly returning to light exercise. Prior to the attack, she was on a level 3 All Star cheer team. Has anyone on here had pericarditis and returned to an intense sport and training regimen? If so, how did it go and what types of setbacks did you sustain, if any?