Hi everyone,
I have recently been diagnosed with recurrent pleuro pericarditis, after one acute episode in August. Its management is proving difficult and even amongst doctors there seems to be confusion and disagreement about how to treat it. I was given steroids at the first recurrence, which proved to be not the best course of treatment ,as it can lead to more recurrences. Just wondering if anybody is experiencing the same frustration and has come across any expert in this field.
Hiya, and welcome to the group
But...pleuropericarditis, OH OUCH! Forgive the long post:
I have Rheumatic Heart Syndrome (since the early 1960s) and it predisposed me to all sorts - I spent much of my pre-and-teen years enduring unspeakably painful pleurisy (finally 'outgrown', thank-goodness) and now have recurrent pericarditis. I can all too well imagine what the combination of pleurisy and acute pericarditis must be like for you!
Do you have pleural and pericardial effusions? If yes to one or both you need to be monitored closely for cardiac tamponade - a life-threatening complication of either effusion as it can interfere with your heart having enough room to beat correctly.
Are you in the UK? I ask as not all our members are - we have members from all over the globe posting here.
Recurrent pericarditis in the UK is usually treated at least initially under a cardiologist team care after referral by a GP, and pleurisy under a pneumothorax team. I don't know if a pneumothorax specialist would be the better choice - presumably he/she would have knowledge of both conditions and the expertise to properly manage both, I think. But your best care would come from a pericardial specialist (I think).
I am in the UK and hate to have to tell you, if you are in the UK, pericarditis is not well understood here. We have very few pericardial specialists here and finding one close(ish) to you is truly the quintessential needle-in-a-haystack experience. The next best thing to a pericardial specialist is a cardiologist willing to learn all he/she can about the condition and the best ways to treat acute flares.
My cardiologist is learning about pericarditis - he says he needs to catch up with me:). I was diagnosed with recurrent pericarditis in the early 2000s (first acute case was 1998) whilst living and working in the USA and in hopes of keeping the condition controlled have spent the years learning all I could about the condition.
Have you seen this:
bhf.org.uk/informationsuppo...
The Americans have a lot more understanding of the condition and all its complications than medics here in the UK, as do the Central and South American medics where pericarditis is a common consequence of Dengue Fever (I had the fever in 1995 while living in Guatemala).
I've noticed the main medication for pericarditis is colchicine - a drug I was tried on but had severe side effects from so they don't even bother to offer it to me any longer. Thankfully no-one has suggested steroids.
I would love to be referred to a pericardial specialist but my cardiologist says the one and only specialist in a 300 mile 'radius' (I live on the North Sea so there is no real radius) is booked so solidly it's not on to even try.
Presuming you're under a cardiologist care, at your next meeting ask him/her about referring you to a pericardial specialist. His/her answer will tell you if such a referral is possible. You may live in a trust with enough of the specialists that you might actually get to be cared for by one.
If you're not under a cardiology team care, ask your GP for a referral to a specialist. I would think the combination condition you're going through (oh ouchie, ouchie, ouch!) rates specialist care. Be sure to ask if a pneumothorax referral is in order.
Hi....thanks... yes I am in the UK but was first diagnosed in Italy where I had my acute first attack. Italy is at the forefront of care of pericardial diseases with some of the most up to date research . I have seen a specialist there who is suggesting drugs not available in the UK and have unfortunately already come across exactly what you say about pericarditis in the UK: it was a UK pulmonologist who started me on steroids to treat my first pleurisy recurrence based upon his lack of knowledge of the consequences on pericarditis. This condition over here seems underrated and under studied, which is why I was wondering whether it was just my impression....
The European Society of Cardiologists put out new guidelines for treating pericardial diseases, including pericarditis, in 2015, which you may find useful. Pericarditis is sections 3.2and 3.3:
escardio.org/Guidelines/Cli...
escardio.org/Journals/E-Jou...
Pleuropericarditis is not a commonly used term - I'm assuming you are referring to inflammation of both the pleura and the pericardium. I had pleurisy with effusions, which was then followed by pericarditis on and off for a couple of years. I sympathise with how painful it is. Fortunately though a common cause of chest pain it very rarely causes complications. All UK cardiologists would be expected to be able to treat pericarditis ( and any associated procedures except for pericardiectomy, which is a very specialised surgery) - they're just not labelled as specialists as the US likes to do. However pericarditis, while often diagnosed in A&E , is frequently treated in primary care as it's pretty straightforward, and rarely problematic (though definitely miserable!).
The guidelines give a combination of Colchicine and NSAIDS (e.g. ibuprofen) as the first line treatment.
Steroids can be added in recurrent pericarditis but only as triple theory with colchicine and ibuprofen.
It is important to carry on treatment long enough - the guidelines suggest don't stop or taper until your CRP (C-reactive protein) normalises ( mine was 160 and my ibuprofen was stopped too early in my first bout).
In fact in recurrent pericarditis the guidelines say colchicine for 6 months.
Colchicine in higher doses causes vomiting and diarrhoea, but it's entirely dose-dependent and the dose can be dropped to avoid this.
You don't say what drug your Italian doctor is suggesting, but since it only started in August I wouldn't personally rush into the immunosuppressive drugs without trying a decent course of colchicine and ibuprofen. Rest is important too, and patience ( hard I know when it can be so painful). I found at the end I could nip it in the bud with ibuprofen if taken at the first twinge
Quoting from the guidelines:
"Severe complications are uncommon in idiopathic recurrent pericarditis. Cardiac tamponade is rare and generally occurs at the beginning of the disease. Constrictive pericarditis has never been reported in these patients, despite numerous recurrences, and the overall risk is lower than that recorded after a first episode of acute pericarditis (<1%). Thus it is important to reassure patients about their prognosis, explaining the nature of the disease and its likely course. The complication rates are related to the aetiology and not to the number of recurrences. Drug treatment should take into account this favourable outcome to avoid more toxic agents. However, quality of life can be severely affected in patients with repeated recurrences, subacute or incessant pericarditis and glucocorticoid dependence."
All the best
Many thanks, the ESC' s guidelines are useful indeed. The illness has impacted on all aspects of my life including work for the last 4 months: like all other patients with this condition, all I can do is rest. Although it is reassuring to know that serious complications are rare, I find it very difficult to cope with its severe effect on my life, not to mention the pain. I've also found that unfortunately not all pulmonologists or cardiologists are familiar with the guidelines, which leads to poor management of the treatment. It's a tricky condition that does not attract a lot of interest. A new Congress on pericardial diseases organised by the ECS is scheduled for October 2020, let's watch out this space. Thank you again for the the very informative reply.
