pericarditis

[HawthornHeart]

Hi everyone,

I'm just looking for a little bit of advice from any fellow sufferers...

I was diagnosed with pericarditis in January on the 10th day of a Covid-19 infection, after ending up in A&E due to chest pain and difficulty breathing.

That acute pericarditis went away around a month later, but I was left with intense fatigue for around another 6 weeks, though no pericarditis symptoms. I finally started feeling a lot better last month in April and felt able to get back to my usual activities such as cycling etc.... then unfortunately in mid-April I suddently got the chest pain and difficulty breathing come back, after an active weekend cycling. (also included running up 4 flights of stairs due to a deadline I had to meet - which I now really regret!)

I did try to rest and hoped that it would just go away quickly but unfortunately it lingered, and I think maybe I didn't do enough to rest overall. I was desperate to to not cancel a course I was doing etc... and had other plans that I still pushed through with. It seeemd to improve a bit after two weeks though, but then now seems to have got much worse again. Really bad chest pain and breathing difficulty and waking up from heart palpitations.

I'm just feeling really worried. I've been back to the GP but seem to get dismissed a lot - they did an ECG but it came back normal. Some things I'm confused about:

- how do I know if its bad enough that I should genuinely be worried and go to a&E? as it seems to fluctuate

- should I be worried that it seems to have gotten worse again?

- seeing as its come back once, does this mean it is recurrent and it might stay with me forever? or maybe it never properly healed the first time?

- I'm desperate to be rid of this and really hope my heart heals from this bout. what can I do to encourage healing and prevent it coming back again? Specifically, what sort of activity is and isn't ok? I thought I was definitely ok before which is why I started cycling again... should I never cycle up hills again? Or just avoid it for longer maybe?

- Is walking ok while I have this bout of it? I try to walk not too fast... also don't have energy. but it's really frustrating and difficult having to be so stationary.

- I've been taking about 3 ibuprofens a day... didn't want to take 3x3 a day as it really messes up my stomach, and the ibuprofen didn't actually seem to have much effect the first time round. is it worth asking for colchicine? I did mention it to the dr on the phone but he said he didn't know anything about using it for pericarditis...

- another issue is... seeing as my ECG was normal, what if this isn't actually pericarditis?

thanks so much for any help. really appreciate it.

[Sarahtakethat]

Gosh, I think you should see a different doctor. First of all, Colchicine is what’s used for pericarditis! Also, I started to suffer chest pains after Covid. Ecg’s always showed nothing. But on further investigations - angiogram, I was found to have blocked arteries and had stents fitted. So, as I said, I think you should persue this further with another doctor. Good luck!

[Scho1]

Hi, I’m so sorry to hear of your suffering. Unfortunately peri is not always fully understood by many medics hence there is a national research party consisting of some of the best cardiologists, rheumatologists and immunologists here in Europe and the USA.

I’ve had idiopathic, recurrent peri (now classed as chronic) for 18yrs.

Colchicine and anti inflammatory meds such as celecoxib, ibuprofen’etc are the main treatments with steroids being avoided due to increased flares of peri in weaning.

Rest and keeping your heart rate under a 100bpm is key to recovery and it sounds like you may have pushed a little too hard too soon. Total rest for 3months is usually advised where possible.

I would say if your pain is such and your breathless a visit to A&E is necessary.

It’s been found peri rarely shows on ecg and Troponin is not usually raised but Ddimers are. The gold standard for determining peri and effusions is a cardiac MRI.

Please visit A&E.

Here if you need to chat more.

I also joined the UK, EIRE & CHANNEL ISLANDS pericarditis group where there are many fellow sufferers including a couple of doctors in the group who share their experiences and we all support each other.

[HawthornHeart in reply to Scho1]

thanks very much. I have just started colchicine now so hoping that will help get rid of it properly. ibuprofen hasn't seemed to do much for me.

total rest for 3 months seems so long, but I will try it. would you include walking in that, and if so, for how long in one go? thank you.

I'd like to join the pericarditis group. is that a group on HealthUnlocked, or a different platform? thanks

[HawthornHeart in reply to HawthornHeart]

Oh BTW, I've found the group on facebook! thanks

[Scho1 in reply to HawthornHeart]

Hi there, glad you found the group and I hope you find it useful and supportive.

Rest is really key.

[Welshwomanarrythmia]

My symptoms were trashed by my GP. I feel you need to see the cardiologist and put all these questions to them. If unable to access an appointment, I would email their secretary and ask for advice that way. If no response email your Health Board concerns department who can advocate on your behalf You really need to know answered to proceed safely. Hope you get the answers

[bluemoon572]

If your recurrent chest discomfort is quite similar to that which you experienced when you had documented acute pericarditis,I'd investigate to ensure that your current EKG was indeed unequivocally normal as it would rule out a reccurrence of acute pericarditis. Obtain a copy of the EKG report or have it reviewed by a cardiologist if it's a computer interpretation which can contain inaccuracies 30% of the time. . An autoimmune post covid pericarditis could flare up but should show EKG abnormalities.

[Warm-heart]

I agree with the others here. In fact I had to see a private cardiologist to then get into the NHS system, sometimes that is how it works but it gives you a springboard. NHS cardiologists are ridiculously overstretched currently. But this is no excuse for not getting a referral. A heart is not for them to dismiss, it's important to get this seen to properly. I had a 24 hr ECG, an echocardiogram and angiogram when I had suspected pericarditis, followed by a cardiac MRI. See a different GP at the very least, and keep pushing doors til you get yourself sorted. Sounds like you are used to being very fit, so this is a horrible situation to be in. So sorry you are going through this!

[EdtheDead]

I've allegedly had Pericarditis now for 6 months. I say allegedly as this was simply diagnosed by an A & E Doctors saying he could here the rub, I'd had an M.I a month previously. No Echo, no MRI and no CT to confirm whether I actually do have it.

Initial 3 months course of Colchicine seemed to do the trick and for 6-8 weeks everything was fine. In the middle of that 6-8 weeks we moved home so I was very active. Consequently it came back with a bang and I'm now struggling with 'alleged' Recurrent Pericarditis and it's damned debilitating.

As you will know the pain mimics a Heart Attack and can be quite frightening so consequently it usually puts the fear of god in you. If I was to treat every little flare as a potential M.I and be having the Ambulance out a minimum once a week.

I've learned to live with my current situation, I really shouldn't have to, but all I want is answers.

Do I or don't I actually have Pericarditis. If I do then fair enough, I'll continue with the medication regime and hope for the best. If I don't then what actually do I have.

After the M.I I was told it was a very mild nstemi with preserved LV function and after angiogram didn't need stents as no blocked arteries. I was told everything was good and should make a quick recovery.

But here we are, 7 months on and feel worse than ever.

To compound matters I've had to start the process of Cardiology referral to my new health authority all over again.

[HawthornHeart in reply to EdtheDead]

so sorry to hear about this! I really hope you do make a recovery

[HawthornHeart]

Thanks so much everyone for your responses. It's been really tough.

So I managed to get an echocardiagram but that came back as normal, so I think the doctors are not taking me as seriously or are seeing this as mysterious 'long covid' (the first pericarditis happened at the end of acute covid infection). It's hard to know if it is really peri, but the way it came on suddenly a second time, and was worse lying down, seems like peri....

I have requested the other tests too (angiagram and cardiac MRI and 24 hour ecg) but haven't heard back yet about that. Thanks for the recommendations.

It has improved quite a bit over the last two weeks so that's good, but I still feel very fatigued and get the breathing difficulty and chest discomfort on-and-off. Finally got prescribed colchicine so have just started that now. He said to take it for a month but everywhere recommends 3 months to prevent more reoccurences... out of interest, how long have some of you taken colchicine for?

And also, have you generally found that fatigue has lasted for longer than the intense chest pain experience?

It's so hard to know what to do regarding how much to rest! I'm desperate to get my life back but also don't want to do too much too soon again and have it come back...