Who has pericarditis and some info they want to share

[Munich1961]

Hi I’ve been living with chronic pericarditis for the last 7 years.

[Hidden]

How was that diagnosed?

[Munich1961 in reply to Hidden]

By a cardiologist in Germany

[Hidden in reply to Munich1961]

But how?

[Munich1961 in reply to Hidden]

Cardio gram and ultra sound and blood test ...he can see where the fluid is ..plus the rubbing sound of the heart pumping.

[Schora1]

Hi I have suffered with it on and off now for 14 years, but the last 3 have been the worst. It was only properly diagnosed in March 2019 after being treated incorrectly throughout previous years for all matter of things such as micro vascular angina, unstable angina etc.

I am currently being investigated for autoimmune disease as the peri flares have been constant for the past two years resulting in the loss of my job.

I am just 56 years old.

I also have two effusions.

[Munich1961 in reply to Schora1]

Hello we have similar experiences ,I am 58 and was in the hospital for something completely else a very strong E. coli and was told to rest. I didn’t and I believe it went to my heart from the bacteria. They have tested me fir autoimmune diseases but have come up with nothing so far.

[Sunnie2day]

Hiya and welcome to the forum!

I have recurrent pericarditis (aka 'chronic'), first diagnosed in the USA back in the early 2000s after the initial case in '98 cleared but then a new case happened. Cleared, new case, cleared, rinse-repeat until the pericardial specialist said my bout with Dengue Fever in '95 combined with my childhood incurred Rheumatic Heart Syndrome left me susceptible to 'chronic pericarditis'. Once I knuckled down and followed his guidance I went 14+years without an acute flare (yes, well, it took me a while to realise he knew far better than meownself).

FF to late 2010 when I retired home to the UK, did fine for nine years until root canal treatment in March 2019 left me with a whopping acute flare. It took a few months for the acute flare to be officially diagnosed (I knew but...) and I had bloods, scans (one of which revealed scarring, thickening, and minimal pericardial effusion) and I think my cardiologist is finally coming around to agreeing pericardial effusion as minimal as mine CAN cause angina

Over a year on I'm FINALLY clearing it - I was going weekly to have the GP practice nurse listen for the pericardial friction rub until the second week of March but the pandemic ended that so there is no 'official' determination of the flare being cleared. Every day a little stronger, more energetic, and the wheezing is almost completely cleared up.

What helps me recover (and keep it away once a flare clears) is low-sodium (less than 2000mg per day) eating, walking and other exercise to keep fit, sleeping with my upper body slightly raised, and avoiding: mould, heat, humidity.

Via email exchange with my cardiologist I was advised a few weeks ago the effusion is now permanent and I will be having regular scans to ensure it's not increasing. He can't discharge me back to the GP until he sees me in person but is telephoning Thursday morning to 'check in'. I'm his only recurrent pericarditis patient - the condition becoming recurrent is rare here so he says I'm 'interesting', lol!

Re Colchicine, I don't tolerate it well (it was prescribed when a flare in the early 2000s put me through an emergency pericardiocentisis) so there isn't much for me by way of medication. I am on Bisoprolol 1.25mg+300mg aspirin since April 2019 and hey presto - from the first week taking the beta blocker I enjoyed a huge lessening of the typical left-side chest pain. I was still quite unwell according to tests and scans yet I hadn't felt that great in years!