Myopericarditis

[Joanne_888]

Does anyone have any information about Myopericarditis I was diagnosed with this Dec 2019. I feel out on a limb as no one seams to know much about this illness. The more I ask questions the more professionals say there's not alot of information about it, very frustrating.

[Sunnie2day]

Probably the most successful way to get some information is to look for myocarditis, then pericarditis, and then combine the two. Have you seen these BHF publications:

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Other sources of information are: NHS, Chest, Heart, Stroke Foundation, and the American sites including Harvard Med (good site but a lot is behind a paywall), the Mayo Clinic, the Cleveland Clinic, and The American Heart Foundation. If you use the condition name as your search term those sites come up first.

I have recurrent pericarditis (along with other heart problems) but was recently told it is possible at least one of my acute flares was myopericarditis. As it's 'after the fact' they have said there is no way to be sure.

The thing is, here in the UK both conditions, and the combination condition, so rarely develop into serious states that most GPs and many cardiologists aren't all that 'up on the latest' - for most people, pericarditis is mild and clears within a few weeks without complication. But for the rare few others, pericarditis can go onto other complications, and can become recurrent (the myocarditis usually responds to treatment and relapses are somewhat rare).

So, many UK doctors including cardiologists haven't seen enough of the condition(s) to gain a lot of working knowledge. For example, I mentioned to my cardiologist I'd had Dengue Fever and was told I might develop recurrent pericarditis as a consequence. He said he'd never heard of that but he'd look into it, and he also (when I asked about the 'angina pain') said he'd never heard of pericarditis causing angina-like pain but he'd look into it. Next time I saw him he looked genuinely surprised as he told me I'd been right on both counts And now my latest flare is almost recovered from - voila, not as many angina attacks!

Recovery from the condition(s) takes a bit of a while and can be frustrating as you seem to take one or two steps forward then get knocked back for six.

The main thing is to not tire yourself trying to rush recovery - stay warm, avoid stress (physical and mental), also avoid mould-high heat-humidity, stick to a balanced diet, monitor your blood pressure, heart rate, and temperature (I keep a log and when in an acute flare I take my temp three times a day to catch 'swinging' intermittent fever - a sure sign of myo/endocarditis as well as pericarditis and should be reported soon as to the medical professional responsible for your care). Using a wedge pillow to raise your upper body during sleep helps, as does sleeping on your right side instead of the painful left.

Medications can include antibiotics, and Colchicine (it's a gout medication but found effective for pericarditis and works very well for those who can tolerate it).

[Joanne_888 in reply to Sunnie2day]

Thank you Sunnie 2day, all your information has been very helpful more so than some professionals. Wishing you good health for 2020.👍😊

[Sunnie2day in reply to Joanne_888]

And to you - hopefully you'll emerge from your case sometime in March feeling completely well and strong again. I'm saying March as three-four months recovery seems to be the norm for the combination condition. There are a few other members here on the forum who've had myopericarditis and hopefully they'll be in soon to talk about their cases and recoveries.

[Lovetheoutdoors in reply to Joanne_888]

I was diagnosed with myopericarditis on January 5. Well initially told I'd had a heart attack as apparently symptoms and blood test results similar. Pain was pretty bad as was my anxiety. Last couple of days my chests been more painful again. It seems to take so long to recover. Hope this is normal. How are you doing now Joanne?

[Joanne_888 in reply to Lovetheoutdoors]

Sunny2day was very helpful no doubt you have read through the replies I received. I finally feel that I've turned a corner but it's slow and steady. I'm no longer taking any drugs and awaiting another scan result. Rest is the biggest factor to do, something I'm not very good at!!. Hope you feel better soon it's very frustrating so I feel for you. Good luck :).

[Lovetheoutdoors in reply to Joanne_888]

Thank you. However I'm back in hospital. Came in today and they say I have AF but as yet don't know the cause. Two steps forward and one step back. Fortunately the nurses are very caring.n

[Sunnie2day in reply to Lovetheoutdoors]

I'm sorry to hear you're in hospital - are they going to do an echocardiogram (looking for pericardial effusion)?

Has anyone slapped a stethoscope on the left side of your chest between your nipple and back (listening for pericardial friction rub - a very distinct sound, takes training to hear it but most cardiac nurses and all cardiologists have that training, as do pericardial specialists)? If not - ASK as soon as someone medical comes into view, it's the quickest way short of an echo to determine if the pericarditis is back/worsening.

Please update on this this thread and let us know as soon as you know something.

[Lovetheoutdoors in reply to Sunnie2day]

Told blood results show no infection now. Tomorrow doing long scan in case I have blood clot. Day they are looking into reasons I had Af although heart has completely calmed down now. Gone from periods of 180 beats a minute to normal. My sense of humour meant i did smile when you asked had they slapped a stethoscope on my chest between nipple and back as I have no left nipple! The result of a mastectomy. But let me add, that was32 years ago!!!!

Thanks so much for your replies. Means a lot to have this support.

[Lovetheoutdoors in reply to Lovetheoutdoors]

Should be lung scan!!

[Sunnie2day in reply to Lovetheoutdoors]

As I typed that nipple part I wondered if I should use some other reference point but thought it was the quickest way to get the proper location across.

32 years post mastectomy, do you even have a scar there that can be seen quickly? My sister's faded to the point you had to know where to look to find it. She swore by VitaminD oil.

It is possible for pericarditis to relapse without showing infection in bloods - the pericardial friction rub listen is the best and quickest way for a medic to determine if you've relapsed or the pericarditis is worsening and you might want to get bolshie insisting someone with the training to give a listen.

If they even think they hear the friction rub, they'll order an echo to determine how much fluid there is building up in there. The effusion is the single biggest cause of relapse and it can become very serious - honestly, you need to push to have that checked so it can be ruled out or treated.

[Lovetheoutdoors in reply to Sunnie2day]

I never had reconstruction as they weren't doing them at the time because of the problems with silicone. 3 years later when I could have it done, I just didn't want any more surgery. Good thing- you can now see every beat of my heart!

[Sunnie2day in reply to Lovetheoutdoors]

My sister didn't have any reconstruction either, she said she'd been through enough surgery.

Please update when you know something and let us know how you're getting on!