Pericarditis

[Schora1]

Hi all, has anyone with pericarditis been especially bad in the last week? I’ve been really bad and wonder if the weather affects it?

My medication doesn’t seem to be working very well either.

[Sunnie2day]

Hiya, Schora1, and yes, the heat and humidity play havoc with my recurrent pericarditis. I'm reasonably ok if I stay indoors with the oscillating fans and dehumidifiers running full tilt but within a few minutes stepping out of doors I'm getting that dull ache centred in my left breast and radiating up through shoulder and down left arm (typical pericarditis symptoms but also heart attack, ain't it fun -not-). I have a GTN spray (NitroLingual 400) but hate using it; I'm 'only' on Bisoprolol 1.25mg+300mg aspirin (am), no colchicine for the pericarditis (tried it, no help, so they took me off it years ago).

Best if you check with the medical team caring for you, though, to be sure there isn't something more 'involved' going on. One of the problems with having recurrent pericarditis is the patient's tendency (after the fifth or sixth episode) to sort of ignore symptoms thinking, no worries, it will go away...I did that a couple of times and sure enough it moved onto cardiac tamponade. Pericardiocentesis is not fun so you always want to check with the medics when you are having trouble with pericarditis.

[Schora1 in reply to Sunnie2day]

Thank you. Think I may have to go to docs. I don't see cardiologist until 21st now though I see rheumatologist on Tuesday. I'm on just colchicine once a day as they took me off everything else due to LFT bloods rising to 287.

There must be something else they can give me surely?

Im taking ibuprofen in between to help with the pain.

My last scan showed two effusions too.

Hello summer!🙄😒

[Sunnie2day in reply to Schora1]

Is your GP part of the team - does he/she have anything to do with your pericarditis care beyond referrals? Or, do you have a cardiac nurse? I'd at least consider contacting them, or perhaps the BHF nurses on the BHF site to talk to someone with medical training about how you're feeling.

As for pain relief and mitigation medications, I don't know if there is anything else they can give, actually. I'm not medically trained so all my 'knowledge' is down to personal experience - and in mine, they told me after the first diagnosed case of pericarditis 'of unknown origin' there wasn't anything they could give me for the 'discomfort' (hahahaha, 'discomfort'!) than aspirin (I don't tolerate acetaminophen or ibuprofen well), and then, after the colchicine didn't work for me, they told me there wasn't anything more they could give me.

Then after a few more bouts with pericarditis, they told me it was chronic (US term for recurrent) and hopefully in the future something more helpful for pain and the actual illness would be discovered...that was in 2000 or so. When I retired home to the UK in late 2010 things hadn't changed. It's now late 2019, and there still isn't much they can give us if the pericarditis has no discoverable cause (bacterial infection, injury, autoimmune disease, etc).

The rheumatologist may have more to offer, though - do they suspect (or are you currently diagnosed as) rheumatoid arthritis (RA)? In that case there may be some other medications for pain and the pericarditis - from my reading, pericarditis can be associated with RA and they do have some things they can do/give.

I had rheumatic fever as a child, was diagnosed with Rheumatic Heart Syndrome a year or so after the fever, and over the years have been watched for the development of RA as it can be a consequence of RHS. I was told while still in the USA they did see some 'potential for the earliest stages' but here in the UK, ten years later, it's so mild they don't consider my early stages RA to be a factor in the recurrent pericarditis - it may be different for you especially if you've been referred to a rheumatologist.

Two effusions, blimey! Not constricting? Not to speak ill of my cardiologist (he's great, just a bit brusque although he says he prefers 'no nonsense' ) but he is a bit dismissive when I suggest what he's calling angina might, just might, be down to the 'minimal' effusion my echo showed especially as he keeps reminding me my effusion and scarring isn't enough to be constrictive...I'm not going to argue it with him as he's the one who aced medical school and training as a cardiologist. But when I'm 'clear' of the pericarditis, I don't have angina - until I go outdoors in warm/hot and humid weather. If I'm honest I have to say I'll be glad to see the back of summer 2019!

[Schora1 in reply to Sunnie2day]

I have a great cardiologist now who we initially paid to see and after MRI he confirmed I was right after 13 years that I have not got nor ever had unstable angina or micro vascular angina which 4 other cardiologist have treated me for. Brilliant isn't it?

My new GP is great too the problem we have is the Rheumatologist being so slow. My cardiologist insisted the head of rheumatology see me as a matter of urgency back in March as he suspects I may have RA. I do have Fibromyalgia diagnosis, but he thinks more likely RA.

However although I did see rheumatologist within two weeks of the request I have only had hand xrays and heard nothing since. I have had to badger them along with my gp to be seen this week.

If we get no joy this week we are probably going to pay to see someone private to speed things up.

I need to know so does my cardiologist if it is caused by autoimmune or idiopathic.

So frustrating!!

[Sunnie2day in reply to Schora1]

Hopefully you'll know something Tuesday but if not, I agree with you going private might well provide answers re the possible RA. Your cardiologist seems to be one of those rare 'let's look at all possibilities' medics (RA instead of Fibromyalgia being a suspicion), you've lucked out there, and with your GP.

It is frustrating with conditions like pericarditis - but I think most heart patients have thought things frustrating no matter what their condition (insert wry smile emoji here). Reading here on HU I've seen a number of posts about other conditions that are currently 'little understood' by medics like microvascular angina (MVA), for example.

Pericarditis (and MVA) just doesn't crop up for a lot of GPs and cardiologists here in the UK. My cardiologist (again, great but a bit on the curt side) really seems to want my 'angina' to be something 'simple' like a blocked artery whereas I'm hoping for it to be a consequence of the recurrent pericarditis - he's a bit 'angio-happy' if you ask me and it took some persuading on my part to get him to agree a non-invasive cardiac MRI rather than the cardiac catheterisation he's so keen to do in October! My GP has a huge respect and admiration for him but also said if the angina isn't from a blocked artery it makes things more difficult for the cardiac team since they don't see a lot of recurrent pericarditis here.

No-one 'wants' RA (or one of the other autoimmune diseases that have associated pericarditis as one of the 'bonus' of the autoimmune disease) but at least with a confirmed (and correct!) diagnosis there is an answer and a treatment plan.

[Schora1 in reply to Sunnie2day]

I feel very lucky to have found this cardiologist and on the whole I get treated like royalty. Apparently according to staff if Abraheem says jump they ask how high. However rheumatologist doesn't quite get the urgency he has insisted on. Nephrologist has been great too doing all sorts of bloods and tests to actually rule out some autoimmune diseases.

All my medics keep emailing rheumatology to expedite appts and do muscle biopsies. The great thing also is nobody can do anything without Abraheem agreeing so he is on speed dial even to me.

We think this is because he knows I have been misdiagnosed for years and treated with the wrong meds which have themselves caused issues such as Barretts oesophagus and issues with my kidneys and liver.

Hope you have some luck.

[Sunnie2day in reply to Schora1]

The same to you (especially with the rheumatologist) - please update as you go along through the investigations!

[Schora1 in reply to Sunnie2day]

Will do. Take care. 😊

[Kj2004 in reply to Schora1]

Hi I took pleurisy in June 2017, shingles in Oct 2017 and pericarditis in dec2017. Since then the pericarditis keeps coming back every few months ( very annoying). Was diagnosed with sjogrens syndrome march 2018 which docs say is behind the recurrent pericarditis. Am on colchicine , omeprazole, diclofenac and hydroxychloroquine. When pericarditis reoccurs I have to double up on colchicine and diclofenac meds for 4 weeks. Wish it would just go away but am stuck with it and just have to try and manage it as best I can. Stress and lack of sleep make it worse. Good luck and let me know how u get on as I don't know anyone local who has what I have 😊