Chronic Pericarditis

[Tanyaz]

Hi I have been suffering with pericarditis for nearly 2 years. My initial attack was in January 2018. I was taken into hospital with a suspected heart attack - very scary! After being discharges with no diagnosis I went backwards and forwards to my GP with no luck. I then eventually went private - luckily I have health care through work. After many test and backwards and forwards, loads of unnecessary drugs, I received the diagnosis of pericarditis. I was put on (and still am on) Naproxen, Colchicine, omeprazole and Nortriptyline and told it would clear up in 12-18 months. This has obviously not been the case as I still have it and have regular flare ups. I have been back to my consultant many time who sends me away each time stating it will take time. I have now been discharged from my consultant and back to my GP. My private healthcare only covers for diagnosis and not for ongoing care. I have not been back to my GP as they have not been very useful in the past and to be honest I'm fed up with being fobbed off!

My question to anyone is how do you manage this? Can you control episodes happening? Do you actually recover from this? Also half of the time I am struggling to tell if the chest pain is the pericarditis or anxiety related to having this? I'm at a real loss here and would welcome anyone's thoughts?

Thanks in advance

Tan

[Sunnie2day]

Hiya, Tanyaz, welcome to a club you wouldn't wish membership on to anyone. Pericarditis is hard to recover from, hurts in a way that leaves the sufferer wondering if it's a heart attack or 'just pericarditis', can become 'relapsing' or 'recurrent' (my 'joy') and can progress to a condition called 'constrictive pericarditis' and did I forget to mention cardiac tamponade (been there-didn't get the tee shirt and the pericardiocentesis scar has faded to nearly invisible).

It can be from bacteria OR virus so they (meaning doctors) can't always reliably work out what the initial and recurrent acute episodes have been caused by although testing the extracted fluid after a pericardiocentesis can identify the 'cause' for that particular episode. A lot of people have had it but usually clear it, often without even knowing that 'rotten cold' was really pericarditis - 'normal' recovery is usually under 8 weeks and is generally uncomplicated.

But the saddest truth I've come to realise about the illness is: if the initial pericarditis is stubborn and hangs on longer than two months, it becomes relapsing requiring medical interventions like medications and the aforementioned pericardiocentesis, can become recurrent (meaning you clear it but then a few months later you're acute again and it's from a different cause than the one you cleared a few months prior) and is almost certain to come back at the slightest provocation (see my avoidance list below).

My first episode with what became recurrent pericarditis was in the late '90s; after two episodes it was 'upgraded' to relapsing as it had reoccurred during the 6-8 month recovery period - which of course meant tacked on recovery periods, and by the 3rd or 4th time, was upgraded to 'chronic' (I was living and working in America at the time). Unfortunately, the colchicine side effects were worse for me than the illness and they marked me as 'intolerant of' - it's not been prescribed for me in decades. Yes, decades - I've had this since 1998.

I managed to avoid an acute episode from 2005 to 2019 by:

**Avoiding germs and bacteria - they never did work out what caused my initial acute episodes but think it might have been bacterial from an infected tooth OR, as the cardiologist put it 'Some random bacteria picked up off a trolley grip or door handle'.

**Avoiding dental work if prophylactic antibiotics aren't prescribed

**Avoiding heat and humidity

**Avoiding mould

**Avoiding stress both physical and mental

I also work at:

Keeping my sodium/salt intake low to prevent fluid retention in my pericardium - NOTE: do not, repeat DO NOT do any reduction/restriction without consulting a medical professional (more on that later).

Losing/maintaining a healthy weight as I've noticed I fight off acute episodes better when at a lower, optimal for age and frame weight.

Logging times I feel chest pain and environmental conditions (hot, cold, humid; was I out walking on incline terrain, etc)

There's more but that should get you started.

I spent my entire working life in the USA, retired home to the UK in late 2010 and was going along fine until March 2019 when I had to have root canal treatment. As I'd not pushed the GP to list my US diagnosed heart condition(s - yes, I have multiple ones) the dentist wouldn't give me antibiotics and within a few days I was quite unwell as the released infection went straight to my pericardium. Long story short, by late April I went to the GP (sent there by the dentist who took one look at me when I came in for round2 of the root canal treatment and said 'Shall I call for an ambulance or will you leave here and go straight to the GP?') and was being seen at the Rapid Access Chest Pain (RACP) unit very soon after which led to an exercise ECG (didn't last 90 seconds before the chest pain spiked from dull ache on the left to a whomping sharp pain) which led to an echocardiogram, and by May my heart conditions made it onto my UK medical record. I was assigned a cardiologist and have not been discharged back to my GP as he is recording my chest pain as angina and wants to be sure there are no blockages causing the sharp spikes I'm now getting on exertion.

See if your GP will refer you to the RACP unit in your area - it is very helpful in getting the proper attention for this condition.

[Tanyaz in reply to Sunnie2day]

Thanks Sunnie2day

It sounds like you have had a rough time of it! Mine too was caused by a chest infection that didnt clear up properly and went straight to my heart. Very good advice I will start to keep a log so I can track how often I am having episodes. Ide love to be able to keep the stress to a minimum but as a full time working mum of 2 kids and a husband (the 3rd kid) it seems vey unlikey. I am trying as I know this is a big trigger for me. Im so glad you mentioned about the humidity. I really sufferd this year with this. I asked my consultant and he said this would not make a differance!

Thanks again for the advise, stay away from the dentist!

Tan

[Sunnie2day in reply to Tanyaz]

It hasn't been the most fun, I'll admit. My UK cardiologist is still, despite all the evidence I present him with, unconvinced humidity has an affect - he is also quite reluctant to admit sodium/salt reduction makes a difference but says it's ok for me to stay below 3g salt as long as I'm alert to potential problems with reduced salt intake (recommend levels for a woman my age is 5-6g daily). It works well for me to keep it to no more than 3g - hard to do these days so 'home-cooked from scratch' works best for me to keep to that level.

What works for me may not work at all for you but all the peri-patients I know say humidity brings on chest pain in short-time, and the few who admit to reducing their sodium intake say they feel much better keeping their intake at 1500mg sodium or salt at 3g per day.

It's not helpful when the sad truth is the condition and its complications are not as well understood here in the UK as is in the US and Latin American countries where pericarditis is practically endemic. I think in the whole of the UK there are only three pericarditis experts - in Latin America even the smallest populated areas have at least one physician trained in the condition as it is correlated with Dengue Fever (yes, I've had DF stage2, contracted whilst living in Guatemala in the mid-90s).

I think quite highly of my GP and cardiologist and want to be clear I'm in no way complaining about either - both are ace at listening without eye-roll or eyeball glaze-over, lol, and are keeping me 'on my feet' rather well since things went wonky back in March.

Re the dentist, he's the replacement for my former dentist who took my word for the heart issues and routinely ordered antibiotics. He retired in 2018 and the replacement fellow is shaping up to be great - I've been back to see him twice now and he has a standing order on my chart for prophylactic antibiotics. Three weeks ago I had to have that pesty tooth extracted, I got the full five day course of antibiotic and am fine.

Best luck to you as you go on!

[Cat04]

Try joining Facebook page

UK Pericarditis Group

Lots of good info on there from fellow sufferers.

[Tanyaz in reply to Cat04]

Thanks just joined!