Recurrent Pericarditis : Does anyone... - British Heart Fou...

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Recurrent Pericarditis

Coralie5141 profile image

Does anyone have any experience with Pericarditis? I have had it four times now and I am trying Colchicine for a year to see if it prevents recurrences, but so far no luck. Any suggestions of other things I can do/try?

24 Replies

Hiya! I have recurrent pericarditis (since first bout in '98-'99). I can't take Colchicine as I get every side effect listed (and some not listed until I was put on it and had to be blue-lighted to hospital one 0'dark-thirty) - if it's working for you, it's THE medication for the condition.

I avoid recurrences by:

*Avoiding heat, humidity, mould, saunas and steam rooms, physical and mental stress, crowds, and sick people (I hate having to tell friends I can't visit them in hospital but...I can't visit them in hospital!)

*Practising 'extreme hygiene' - disinfecting door and trolley handles when out and about, frequent washing hands, keeping my hands away from my face, coughing into elbow, staying in when not feeling well, washing clothing after one wearing

*Avoiding temperature extremes (too hot/too cold) but leaning towards keeping warm especially in winter

*Eating properly (no processed or high sodium-salt foods - undertaken after pericardial specialist advised my case was made worse by eating more than 3-4g salt per day, your medic is the only person who can advise regarding salt)

*Staying as fit as possible - but not 'pushing it' when in an acute flare and after the flare, being careful to start back slowly

*Getting at least 7 hours sleep per night

*Knowing the signals my body sends warning of an impending or worsening flare

*Knowing the symptoms of pericardial effusion trying to progress to the point of cardiac tamponade (pericardiocentesis - not. fun!)

*Keeping a daily log noting my am/pm blood pressure and heart rate, and any pain or other symptoms and showing that log to the GP, cardiac nurse, and/or cardiologist during each appointment

I managed to go from 2005 to 2019 without an acute flare following the above.

Now I'm trying to fully recover from the acute flare brought on last March (2019) by 'unprotected dental work' (funny phrasing but not funny to have a root canal treatment done without prophylactic antibiotics cause the infection to go straight for my vulnerable pericardium!).

I'll get there but it really does seem as though it's taking forever especially now I feel so much better but the weekly visit to the practice nurse to listen for 'pericardial friction rub' sound tells us both I'm still not quite over it.

Thank you so much for this!! It’s honestly felt like I’m the only one suffering with it but it’s easier knowing I’m not alone.

Have they not suggested any other treatment options that would essentially cure it?

Well, there is a 'cure' but they only use it in 'worst case' scenarios - when the acute flares continue over a few years without lengthy breaks between flares, they can do a thing called a pericardiectomy where they go into your chest and cut away the pericardium.

I'm not a candidate as I went so long between acute flares (2005 to 2019) but they've brought it up as an option if I start having acute flares close together.

They like acute flares to only happen once or twice a year once they diagnose a patient as having 'recurrent pericarditis', if that often - they love I went so long between flares and if I can manage to fully clear this one and then go a year (or better still several years, hey, it could happen), the pericardiectomy is off the radar.

Are you under a cardiologist or is your GP managing your case? Has anyone suggested a pericardial specialist to you?

I was told that was a ‘last resort’ type option. I’ve been seen by several general cardiologists, but they have all told me that it should get better if I stop doing exercise as intensely as I do. I am a full time athlete (training 24 hours / week) and can’t see my life without rowing so currently having several flare ups back to back almost. I’m just looking at what options I really have...

My cardiologist told me to give away or sell my rowing machine (sob!) - I miss it! But the temptation was too great, I'd start feeling better and tell myself 'Oh, ten minutes, that should be fine!'. But it really wasn't.

It's driving me slightly mad (no, really, I find I'm more cross than usual this past six months especially at the lack of activity) but every day I sense a slight improvement over the previous day and I know it's owing to not pushing myself as hard as I would like.

I'm 'allowed' up to 2 miles walking in the morning with another 2 in the afternoon, plus some free weights (but nothing over 2.5kg) and my 'granny bike' - one of those gosh awful half bike things I have to perch on the edge of a dining table chair and pedal for no more than ten minutes total (2 minutes pedalling then 1 minute resting, for a total of ten pedalling minutes). Then I'm 'allowed' to hoist the contraption up on the table for three minute rounds with a one minute break - twice. No more.

I'm a 63yo gran, I NEED to work harder at this fitness thing and not being able to is doing my head in, frankly. But...every day I don't push myself as hard as I'd like I see a slight improvement. Always knocked back if I try to push. So I have to force myself not to push.

I am so sick of being sick - I imagine you're the same. If you find something that works for you, please post it in, I'd love to know any tips!

Wait, what? How old are you? I hated being a 40something when I was diagnosed, if you're a full time athlete you must be much younger - have you talked with the cardiologists about referring you to a pericardial specialist who can assess and advise a regime for you that won't slow your recovery but will keep you in at least minimal condition for returning to full time training once you clear this flare?

Yeah the whole thing is so frustrating, and I’m only 21 :( I didn’t realise there was such a thing as a pericardial specialist?! Instead I’ve just been training through all of the symptoms feeling pretty rough everyday just trying to get through it. Maybe that’s something I can ask the cardiologist about when I see him next!

Yes, definitely ask if you can be referred to a pericardial specialist. There are not many in the UK but there are a few and they have the specialised knowledge a young athlete with recurrent pericarditis would be best served by.

Have you had an echocardiogram showing how much (if any) pericardial effusion you have? That's what you're really trying to beat, that effusion (build up of excess fluid in your pericardium) - and in all honesty, trying to train through it only makes it worse if you have any.

Not all pericarditis patients will have the effusion (but most do). You might want to start a list of questions for your next cardiology appointment with 'Can you refer me to a pericardial specialist?' and 'Does my echo show any pericardial effusion?' top of the list.

Have you seen this BHF publication and the links on the page? I found it very informative:

bhf.org.uk/informationsuppo...

Hi Charley,

I’m also a full time athlete and I could imagine fitness for you is also your anti depression so I could imagine for you also it’s a matter of vicious cycle also.. can you update me on your progress please?

I second that - Charley, how are you doing these days?

Hi Darron,

Yes it is a bit of a vicious cycle unfortunately. I am currently still training through it all, taking regular pain killers helps a little - but I know this isn't a long term solution. I have been prescribed Colchicine for 10 months and if it doesn't work we have discussed switching to steroids.

There are definitely good days and bad days, but I am determined to continue with training as there is the opportunity to represent the country at European and World championships this summer, so as long as I can make it till then, I will then be able to reduce my training load.

Sunnie2day How are you getting on?

Oooh, please keep us updated on the championships!

I'm better a little more every day - still wheezing but they've stopped my weekly visits to the GP surgery for the practice nurse to listen for lingering pericardial friction rub sounds (which if present means I'm still classed as 'acute') over concerns about coronavirus exposure - but I can feel improvement every day so I'm happy.

Again, please keep us updated on the championship events!

Glad to hear you are doing better! It can be very lonely and depressing at times feeling like a never ending battle, but it seems like you're on the upward spiral and I'm so happy for you, fingers crossed it stays that way :)

I will keep you updated. It's difficult because they want me to disclose medical records, but I am afraid that, if I do, it will affect my selection if they see I am training through something I have been advised not to - but I guess we will have to see. I am determined that enduring all of this WILL be worth it.

Dear Charly5141 – First I should note that Sunnie2day answered my first reach out on this chat group some months ago and her experience is obviously extreme and therefore useful.

My experience is as follows: I ran my 6th marathon in 5 years in April 2019 and have had generally outstanding health and fitness for a 60yr old male until early Oct. 2019 when my pericarditis struck very painfully. As other Ibuprofen based anti-inflammatories wreck my stomach, I was prescribed Colchicine twice a day for 3 months, with Omeprazole to manage the acidity once a day. I have had no mentionable side effects from these.

It’s important to understand the numbers: Pericarditis is rare: 3 in 10,000. Roughly 2 in 10,000 clear up after 6 weeks. However, to quote the cardiologist I will see again in April, “a significant minority (1/3rd, i.e. ~1 in 10,000) of cases are recalcitrant”, so it can take a long time to go away. It’s also a condition described as “Idiopathic”, which means that it is poorly understood. And frequently it’s a side effect of other far more serious conditions, e.g. pneumonia. So doctors will focus on the pneumonia and not the pericarditis. Since its rare, poorly understood, and on its own only inconvenient rather than fatal – well, you get my drift I think?

During my first 3 month dosage of colchicine I had 3 recurrences which set back my attempts to engage in moderate exercise each time. Interestingly the pain and breathlessness only ever returned 2-3 days AFTER stronger than usual exercise, and not during the exercise. But I am probably an impatient patient! I went back to the GP after 8 weeks and he prescribed walking, which is a bit tame for me – but I did it.

3 weeks after the prescribed 3 months of colchicine expired, I had a 4th mild recurrence. So what to do? I rang the surgery and eventually had a letter from the cardiologist: He recommended that I may have to take colchicine for up to 12 months; he recommended resting again for 2 weeks after every recurrence once the pain settles; and there are no other treatments which have been proven to be as beneficial to preventing recurrence as Colchicine!

When first diagnosed I was told that Pericarditis is not caused by lifestyle: But the recurrence has obliterated my previous very active life style! And it can be very depressing for this reason: So please find somebody to talk to if its driving you mad. My conclusion: If it’s been properly diagnosed, the best drug is superhuman patience, very healthy living and enforced calm, with colchicine! And just don’t let it get you down! Good luck and I will keep you updated on my own progress.

Hi Charly,

Unfortunately I myself have recently been diagnosed with pericarditis. I'm unable to offer much with regards to advice, but would like to share my experience so far.

I'm in my mid 40s, never smoked, l have always exercised (gym twice a week, run twice a week and play football), and would regard myself as very active and fit. Just before xmas , I awoke one morning to find a heavy/ crushing feeling in my chest. After a quick trip to my GP and the usual your fine go away, I found myself awoken by pain in the early hours of the following morning . A dash to hospital where ECG, blood tests and X-rays were carried out and pericarditis diagnosed.

Treatment provided, was NSAIDs ( Ibuprofen 400mg x3 per day & Lansoprazole) for 21 days. This however, did not completely stop the pain/ache in my chest, just reduced the discomfort. Later, prior to completion of the medication I received a echocardiogram and Doppler examination which revealed that I had no Effusion and all was well with my heart. With the medication complete, the dull pain and heavy feeling was still present, along with a slightly destroyed stomach from the NSAIDs.

I then decided to give it a few weeks to see if the symptoms subsided, not sure any more if the pain was a bad stomach or pericarditis...?

The following weeks I seemed to improve for 2/3 days then dip back to the previous level of pain. Very frustrating!

After another trip to the hospital (who have been very good!) I was reviewed and prescribed 3 months of Colchicine plus Lansoprazole. Which brings me to now.... still no signs of this completely going, just a few good days followed by a few very uncomfortable days. For the full duration of this diagnosis, I have stopped all physical exercise, had plenty of sleep and continue to do the bare minimum! Again very frustrating! And still no signs of improvement....Any one with similar symptoms? Patience required?

Yes, definitely - with any of the pericarditis types patience is the single most important part of the 'cure' after being diagnosed and treated for pericarditis.

From reading your post it seems you probably have 'relapsing' pericarditis rather than 'recurrent' - hopefully your case will resolve in the next 6-8 weeks now you're resolved to be patient with the mind-numbing and frustrating recovery period. But full recovery could take up to six months, I am sorry to say, and it could take even longer to feel fully back to normal. It depends on how well you respond to the Colchicine, how serious your case is, and the underlying cause of it in the first place - but they can't always work that cause part out which of course makes recovery more difficult as you don't know what to avoid. Worse still, it's considered a rare condition here in the UK - they don't see many cases so they've not got a lot of experience with it, and there are very few pericardial specialists here.

Most pericarditis is mild and 'self-resolving' but some develop to the point of needing medical intervention - like your case. At that point most medics will start asking if you've had any chest trauma (including upper body surgery or injury) or 'heavy flu or cold' or other infection. But often there is no relatable reason for the pericarditis, it just is (idiopathic, meaning no known cause).

My first experience with pericarditis came after having contracted and survived Dengue Fever (whilst living in Guatemala) - two years after the Dengue was cured I was living and working in the USA and was out walking (for fitness). Out of nowhere hit with what felt like a heart attack. The pain had me clutching my chest and hoping I could find help before dying, it was that bad.

Blue-light to hospital, bloods, etc, and a few hours later told I had pericarditis. They see a lot of pericarditis in the USA, especially the South (humid, lots of mould, and a lot of travel and migration from countries where pericarditis is endemic) and nearly every hospital emergency room has a pericardial specialist on call.

I did what the pericardial specialist told me to do and seemed to recover until it 'relapsed' about 6 weeks later - it took several months to finally truly clear that first case of pericarditis.

But then a few months later it came back and that bout lasted about three months from first pain and other symptoms onset to waking up one morning realising 'Oh hey, it's gone!'.

And then about three months later another bout had me blue-lighted to hospital where they did an emergency pericardiocentesis (echo-guided needle aspiration of the huge amount of effusion causing a condition called cardiac tamponade) and that was the most painful and frightening experience of my life. At the time I was in my mid-late forties, and that's when they decided 'probably but we can't be sure' thanks to the consequences of the Dengue plus my Rheumatic Heart Syndrome (from a childhood bout with rheumatic fever) I had 'recurrent' pericarditis.

After that I got serious about beating pericarditis and I managed to keep another acute flare away for close to 15 years (scroll up in this discussion for my list of ways to beat this wretched condition). It was a bit like walking on eggshells - was that a pulled muscle or was the pericarditis back?

March 2019 I had the first round of root canal treatment, the infection went straight to my pericardium and within a week I was so unwell my GP thought I was in heart failure. I am still in recovery - a little better every day but not back to full strength, still wheezing, and still have some pericardial effusion.

Hi,

Thank you for the reply Sunnie2day.

Seems this condition is a difficult one to understand, as the symptoms and duration can vary so much from person to person.

Your post is very helpful in the fact we have to get an understanding of what our body is telling us & the need to manage the first signs.

I failed to mention the cause of the pericarditis diagnosis in my original post.

On my first admission to hospital, (over a few days) 3/4 blood tests later, the doctor advised I had a viral infection & wanted to keep me in for monitoring due to the markers in my bloods increasing. Although the symptoms felt like they were going the other way. (NSAIDs working).

In hindsight prior to my first signs of chest pain/ pericarditis I had been feeling low and exhausted the weekend before but no other signs. (Probably the viral infection getting a hold). I’m still unable to say exactly what the viral infection was! I can only speculate!

There had been a few colleagues ill in the office before, with one colleague feeling ill and having been in contact with the chicken pox virus.....

This leads me to ‘my book’. Over the years I have had Chicken pox as a child. As an adult would never really suffer with colds/flu, just break out in a nice little cold sore on the lip! In my early thirties I had a bout of shingles after contact with a friend who’s children had chicken pox. Which leads me to this.... was the contact prior to my episode the ‘trigger’ ? Is the Varicella Zoster Virus my unwanted friend for life? & my pericarditis caused by this?

Suppose time will tell!

Hi all,

Great to read this post as I to am suffering from reoccurring pericarditis.

I'll start with my story then follow with some questions.

I'm 41 now and have been a heavy exerciser (sounds negative ... maybe it after all this) since my twenties. Ive trained pretty much daily in many sports but mainly endurance and combat sports and was a competitive boxer that saw me training 2-3 times a day for a period. At the beginning of my 30's i developed intermittent Afib (atrial fibrillation) which started at once every 6 months and ended at 4 times a week when I solved the problem with an operation called an oblation. For 4 years after this, every thing went back to normal and I was running, doing Crossfit and cycling. 4 years ago I woke up the day after a long run with a pain in my chest. I thought at the time it was the beginning of a chest infection (I never usually get sick) but after days it developed into a crushing pain in my chest that made it hard to breath when I was lying down. I was on holiday in Ibiza and went to the local hospital where they did and x-ray, ECG but no Eco. They didn't know what it was and release me. After a day the pain slowly went away but then...Booom Afib came back. I had ongoing Afib for 2 weeks and at this stage I did not realise it was caused by what had been a bout of Pericarditis. At this stage i thought "f83K, Afib is back " but after 2 weeks it went and life went back to normal. A year later exactly the same thing happened, the day after training I woke with a slight pain and pressure in my chest, this increased into a crushing pain over a few days, I went to hospital but this time they did an ECO and diagnosed Pericarditis. After 3 days the inflammation and crushing pain reduced but the Afib returned for a couple of week. I was prescribed 600 mg (i think) Ibiprofine 3 x a day + colchicine for a month and no exercise. I took the medication and didn't train for 4 weeks and again life returned to normal.

Since then that has probably happened 3-4 times (say every 3 - 6 months). The day before it starts i've usually training hard (but I train hard a lot). Now when it happens I don-t take the Ibuprofen or colchicine because it seems to me the recovery time is the same without, it reoccurs anyway and it can't be good for you to take all that stuff.

The last time it happened was last Xmas and I was back in Australia to see my family (I live in Italy). I did a 4 hour trail run with my mate and this was more than double what i'm used to. The next day it came back exactly as above including the Afib that again came once the pain and inflammation disappeared (3 days later). After 2 weeks I was back to normal and started training again but started light. I had managed to stay free of this up until Thursday last week when it returned. This 6 months was a long stretch and I thought I had resolved the issue as I had realised that for maybe the last 10 years I had probably been chronically dehydrated. In the last 6 months and had begun drinking lots more water during and after training and was having great results in training and with other problems ( i used to always feel "cooked" and hot after training). On Wednesday it was super hot here and I smashed myself at Crossfit and guess what came knocking again Thursday morning... that little tingle / pressure in the chest :(. Since then the presurre in my chest grew and I knew it was back. The pressure and pain have gone now but this morning I got the usual Afib that happens when the pressure/pain in my chest goes. I do feel though that this time it was super mild and maybe that has something to do with the extra water and better nutrition that I had been benefiting from.

@Coralie5141 - hows your training going mate? Could you give any suggestion to my situation from what you have learnt?

All - Does anyone have an advise for me? I can't imagine life without training so any input on how I can continue my lifestyle and avoid reoccurrence would be amazing. Also, is there any evidence of effects of nutrition and hydration on it? I was vegan for years and rarely eat red meat and wonder if this could be a problem.

Thanks all.

Sunnie2day profile image
Sunnie2day in reply to pduckie

Not wanting to hijack Coralie's five month old discussion so I'll leave it at this: one, scroll up and find my replies to several other commenters here.

Two, best would be for you to start a new discussion - I suggest 'copy and paste' your post here to a new 'question'. I'm now following you so I'll get a notification to my inbox, plus by you posting a new question to start a new discussion, you'll open it up for the several other recurrent pericarditis members - there are a fair few of us!

Third (and finally:) ) welcome to the forum!

pduckie profile image
pduckie in reply to Sunnie2day

Thanks for the reply. Its my first time posting on a forum so I don't really know what i'm doing. :)

Yes I read the entire thread before I posted, very helpfull. Thanks for the advise, I'll start my own discussion now.

Coralie5141 profile image
Coralie5141 in reply to pduckie

Oh wow, sorry that you have had such trouble with it! I think I am almost 'lucky' that COVID has forced me to take some time off. During the end of my last flare I found myself just pushing my body harder and harder almost out of resentment at being ill. A mixture of not being honest with my coach and myself meant my performance was suffering and so was my health.

Anyway, I am still training and taking colchicine twice a day. I had a flare recently after breaking the British erg half marathon record, but I guess that serves me right. I still try and push through when things get bad but I am a lot more aware of the importance of recovery, I take my blood pressure, HR and temp. when I wake up in the morning so I can account for fluctuations in my training and adapt sessions where necessary (that was my coaches idea and it has really helped).

I have given up refined sugar and alcohol (yes I'm only 22, but its a sacrifice I'm willing to make for rowing and better health). I think it has helped but not really sure.

My goals are the same, even if my journey is slightly different, it just makes us tougher!

Hope things clear up for you soon. Any questions feel free to ask :)

pduckie profile image
pduckie in reply to Coralie5141

Thanks for the feedback mate. I don't know anything about rowing and tried to look up what the British erg half marathon record was but didn't know if it was on water, or if not which type of rower and if light weight or not. Seems the heavy weight for your age group is 109min.. not so diff to running. Anyway, you are obviously a very talented and serious athlete and im sorry you have this in your life.

Out of interest, which if the three measures gives you the best feedback on recovery. I have a Garmin so can easily do RHR but have not tried using BP or temp before. Is your BP higher or lower when stressed. I used a Whoop strap for a while which seemed good but to be honest I never changed my training when it said I wasn't recovered and there was always this though " maybe there was glitch in last nights data and i'm ok ti train".

Thanks agin for feedback.

Hey! i'm 26 and had an effussion in 2013 and recurrent pericarditis flare ups in 2019. YOU AREN'T ALONE! I found it so difficult when I had it, a 5 year relationship ended due to it :( but after three flare ups in a year I feel i'm coming through. Some notes from me.

Stress brought it on in 2019, so try relax and if you need to, cut out those pressuring you to be better. Go at your own pace. I found it good when I explained it like "a migrane in your chest", people seem to get that. this illness fucks with your head more than anything, so get a few cheerleaders to support.

Don't exercise too much!! This was the cause of three flare ups for me. Walking is an absolute killer! I found squats, lunges and wall press ups three times a day a great help. However you can go the otherway and become too stationary (which i totally get as chest pain after moving is scary). So keep up the movements in some capacity. Speak to a cardio physiotherapist, she really helped me.

Diaphragm exercises. I got this diaphram "puffer" thingy from my physio. and that helped loads.

Sleep. Make sure you get at least 7 hours sleep a night during a flare up. then afterwards keep that up.

Please let me know if i can help more. It's a scary illness and one difficult to explain. I wish someone told me I wasn't alone when I got it.

Regards,

D

Try INDOMETHACIN it’s an anti inflammation non steroid drug and it worked for me

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