I've had Chronic Pericarditis for 14 years and PAF and Tachycardia. I've had years of Doctors and Consultants constantly down playing and Dismissing the Diagnosis and this has prevented me from getting any support.
Has anyone had any experience of this and how to deal with this. Many Thanks
Hi. I’m so sorry to hear you’ve been struggling so long with peri. I’ve only had it since October 2023 and despite taking Colchicine for 3 months it still hasn’t gone away! Although I’ve only had it a short time in comparison to yourself, I’ve felt dismissed by the cardiologists ive seen through the NHS. I have seen a private Cardiologist and to start with he was dismissive of it , just prescribed colchicine and said take this you’ll feel better! I went back having had no improvement after a month on Colchicine and he took it more seriously. I think this is because it’s not heart failure (I’m pleased it’s not), I’m just told to rest and it’s just time, but the impact on my daily life has been massive I’ve spent 4 months lying on the sofa and still I’m struggling!
There are a couple of groups on Facebook which have been helpful to me and you might want to consider joining; one called Pericarditis which is global and a lot of US people on there, the other is UK, Eire and Channel Islands Pericarditis Group. The US take the condition far more seriously than what the NHS does!
Have you been seen by a pericarditis specialist? There aren’t many in the UK most seem to be in the Royal Brampton I’ve attached the list which was posted on the FB group which you might find helpful.
Sorry the the long reply but hope it helps.
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Hi, I have had chronic recurrent pericarditis now for 18 years and it’s surprising how many doctors do not understand the condition or hear the pericardial rub. There is currently a team of specialists in the UK, Europe and America who are carrying out research into the condition.
Top cardiologists, rheumatologist, immunologists etc from the Royal Free, Manchester Royal, Arrowe Park to name a few.
I joined a group on Facebook after speaking with one of the main admins on here in 2019 who himself had to have a pericardiectomy due to his pericarditis. Not everyone goes on to need a pericardiectomy , indeed most make a full recovery but the group, which has massively expanded allows us to talk with and get support from fellow sufferer’s. The group is called UK, Eire, & Channel Islands Pericarditis Group. You might find it helpful and informative. There are on occasions seminars with the research team where you can ask them questions too.
Hope I’ve been helpful in some small way.
I see [[REDACTED]] . I’ve also seen [[REDACTED]] at the Royal Free and [[REDACTED]] at Manchester Royal
Thanks Schora1, what's is the Pericarditis FB page? I'll seek that out. Yeh its a very difficult situation for sure. I think people think you are nuts when I try to explain what I go through. You'll know this gig all to well...Physically and Mentally its a mission. I loved my sports and they have all gone and getting my Heart Rate up feels like it could be the end. Good Luck on your Journey and Thanks for the Heads up....Cheers
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