Pericarditis

[Rolfie]

This pericarditis has been with me for 3 months. On colchicine. Just when I thought it was gone, with a week free of all symptoms, it suddenly returned with the shortness of breath and palpitations. This has now happened on two occasions. Anyone else gone through this up and down recovery?

[Cookie95]

Hi! For me, it took 8 months for the symptoms to begin to disappear

[Rolfie in reply to Cookie95]

Thanks. I’ll keep you posted.

[Sunnie2day]

Hiya, Rolfie, we merry band of Hearties welcome to a club you never ever wanted to join. Put the kettle on and load a plate with toast, biscuits, or cake - this is a long post but you'll find it helpful in the long run.

Quick question - do they know what caused your pericarditis? Did they do bloods and tell you the result was an infection, or is your case one of the ones they deem 'of unknown origin'? It makes a bit of a difference in how you're treated - an infection caused pericarditis will usually require treatment with an antibiotic plus Colchicine, the unknown origin type is usually just Colchicine if tolerated well by the patient, but not much difference in how you recover - once it gets past six weeks you can count on the roller coaster style recovery.

Have you had a chest x-ray or echocardiogram to see if you have pericardial effusion and how much of it you have?

You're describing what I like to call 'a whomping case of pericarditis' and I am terribly sorry to tell you it's going to be with you for some time to come.

I have recurrent pericarditis, diagnosed in the USA nearly 20 years ago after a mid-90s case of dengue fever contracted whilst living in Guatemala led to my first episode of pericarditis. (I also have other heart conditions so they think between one of my heart conditions being Rheumatic Heart Syndrome, and the Dengue, I was predisposed to pericarditis - have a look at my rather boring profile to see what all I have)

At first they thought my pericarditis was an unknown origin one off, they put me on Colchicine which they had to even quicker take me off when I had some rather spectacular side effects from it and went without prescribed medication - made it through on aspirin. But once I was thought to have cleared the initial case, a few weeks later I was back in hospital with what they decided was a relapse rather than a new case - it sounds from your post that you are in a relapse, which usually means it is going to take you longer to clear the pericarditis, and sadly I should warn you it could go to recurrent despite the best efforts of you and your medics to get you through and over it.

Currently the criteria for a cleared case being declared is the absence of 'pericardial friction rub' sound when the medics listen to your chest sound. Unfortunately you cannot depend on the absence of chest pain to determine if your case is cleared, the only real way is to have a chest listen resulting in no friction rub sound (usually, everyone is different).

Relapsed (where the initial case seems to have cleared only to come back a few weeks later, like in your case) or recurrent (recurrent being one 'acute flare' clears then a few months or a year or so later another flare hits); once pericarditis goes from being a 'heavy cold' illness most people don't seek medical attention for to something that drives even the most reluctant to GP or even A&E (acute pericarditis almost perfectly mimics a heart attack. Or/and angina), it very easily becomes a months long slog back to good health and fitness.

When you began to feel better did you swing right back into physical activities? Did the reoccurrence of symptoms (shortness of breath, palpitations) happen when you tried to 'soldier through' or push to regain fitness? If yes to either or both, you've relapsed.

The thing about long-term (more than six weeks in the acute episode stage) pericarditis is: you cannot soldier through. You cannot push to regain fitness. You must accept you cannot do anything that stresses your pericardium during recovery. Time off or very shortened work hours if you're still in work, nothing heavy duty around the house - now is not the time to do a major home reno, or even redecorate the front hall.

I found this BHF page helpful:

bhf.org.uk/informationsuppo...

The following should help your recovery (with the reminder you must not try to do anything more strenuous than a very short slow walk around the house and your neighbourhood, stopping to rest the minute you feel any pain or shortness of breath):

*Sleep with your upper body slightly elevated - a wedge pillow or two pillows laid longwise down the bed works a treat.

*Sleep ONLY on your right side - lying on your left side will make it worse, lying on your back only a very little less worse.

*Avoid heat and humidity - no sauna or steam bath, no long hot showers, and especially no long soaks in a hot bath.

*Avoid mould.

*Eat a very heart healthy diet (the BHF website eat right publication is at the following link: bhf.org.uk/informationsuppo... ).

*Do try to get a morning or afternoon easy walk habit going - start with five minutes only at a very slow pace and build from there. So, 2.5 minutes from your door leaving 2.5 minutes back, work your way up to 15 minutes each way and if you tolerate that, increase in five minute increments from there.

*Keep a daily log of your blood pressure, body temperature ('swinging' intermittent fever is an indication the acute flare is still on-going and should be reported to your medic), heart rate, oxygen saturation - high-lows of any indicate a problem that should be reported to the medics.

Please keep us updated on how you get on, again, welcome to the Hearties, and I'm so sorry for your predicament - pericarditis is HORRIBLE. Hopefully this will be your only experience with it. We have several pericarditis members here on the forum and hopefully some of them will chime in, they don't write as long a post as I do - win-win for yer

[Rolfie in reply to Sunnie2day]

Thanks for your comprehensive message. Diagnosis was confirmed by echocardiograms. Colchicine and diuretic prescribed. Unclear of the cause as I had no cold or other symptoms. Cardiologist mentioned possible virus. Several Covid tests all negative. Decided to book an antibody test - in 4 weeks😱

When I thought it had passed I resumed gentle exercise and a very brief cycle, with no ill effects and much benefit from simply being out. I do gentle Pilates. I will keep you posted and add my experiences to this forum.

[Mal77]

Hi Rolfie,

Sunnie2day has given v good advice. Myself I had 2 relapses and one recurrence within 4 months of the initial episode. I believe over exertion - in my case 4km approx of walking at a brisk pace, triggered one of the relapses. C reactive protein levels in the blood are good indicators of the activity of your pericarditis. If its still active I have seen it recommended to keep your heart rate below 100. Not sure how widespread this advice is being given. Worth seeking advice of your cardiologist/GP on the level recommended and perhaps investing in a Garmin or similar watch to give you alerts when heart rating hitting too high a level. If it has fully settled then building up slowly is very much the approach to take. Patience is vital. I am now on colchicine for 1 year and have had no relapses in last 6 months. Take care and good luck!

[Rolfie in reply to Mal77]

Thank you Mal 77 for sharing your experience and thoughts of this horrid condition. I did indeed receive good advice from Sunny. It’s hard isn’t it to be patient and be inactive if you are an active person as you sound also. Rest and no /limited exertion is key I am told over - either way if you do over exert it soon let’s you with the relapse. Take care of yourself and positive thoughts to you for a further 6 months with no releases. I’m working on it!