Pericarditis information and support

Hello all, I wanted to start a support and information sharing post about Pericarditis. I'm 30 yrs old male from the UK and have suffered with recurrent pericarditis for 6 month.

For those who have just been diagnosed and are looking for support it does get better, much better! I remember all too well the chest pains that left me in agony and unable to move, pains up the sternum and across the neck and back. Being unable to lie down and so being in excruciating pain and being unable to sleep, they were long nights!!!

On initial attendance at hospital the heart rate scans show similar to a heart attack. Then the echo and x ray showed an enlarged heart and 1.5cm effusion. I was initially started on ibuprofen, painkillers and colchicine. I started to feel better but then the concoction of drugs made me so sick I couldn't eat and couldn't keep my medication down. The pericarditis returned with a bang!!! Can I recommend if you are at this stage be careful with your drugs to stop yourself becoming sick. Make sure you take them after eating and also take a stomach protecting drug, I found lansoprazole worked. I didn't get this advice and so became very poorly!

My pericarditis was at its worst a week after being diagnosed. I was sick from the drugs, unable to eat, unable to sleep from the pain and lost about 1.5 stone in weight. I developed an infection on my lungs and heart continued to enlarge with the effusion growing.

At this point I was put on prednisolone. This is a miracle drug but at the same time I would not recommend it! The first morning I took prednisolone I was so sleep deprived and in so much pain I literally felt I wanted putting out of my misery. I took the drug at 8am, by 1pm the pain had reduced dramatically and I actually fell asleep (sitting up). This drug made things so much more bearable in about 3 days. The problem with this drug though is it dramatically increases the chances of a relapse and its so tough to get off the drug. Hence why 6 months later I'm still taking prednisolone and will be for some time.

Although prednisolone makes you feel so much better at the time I don't think it is worth it given the long term problems. I've three times had my medication reduced to the point where I relapsed, pericarditis returned and I've had to start again.

For those who are interested in prednisolone dosages. I've found 30mg is enough to control my pericarditis when its at its worst. For me I can reduce to 20mg in a matter of days once the pain has decreased. Even getting down to 15mg hasn't been a problem. However last time I went from 15mg to 10mg I relapsed after 5 days. This time my meds are being reduced by 1mg every two weeks thus far its working and I'm down to 12mg without issue. I'll keep you updated.

I've found very little useful information about exercise and pericarditis so I can only post about my own experience. Prior to pericarditis I trained every day whether that be playing football or gym work. Prior to my first relapse I was naïve and thought I could get back into sport. The relapse came a day after lifting weights at the gym. The football didn't seem to affect it too bad. After my last relapse I stopped sport altogether. I have began again very lightly as of a week ago. I'm keeping my meds steady to experiment to see if sport does trigger a relapse. I'll again report back.

If anybody has any tips in relation to exercise and into coming off steroids please let me though.

For those suffering currently I can recommend a hot bath, a hot water bottle and I've read that anti inflammatory creams on the chest help. I found the mental strain s bad as the physical pain. It can get better quickly with the right meds s stay strong!!!

An questions, please ask. I'm not a doctor but have been reading about this for 6months so have a decent understanding

Well after 3 weeks of sport there does not appear to be a relapse or flare up. I am leaving 3 days between each training session to see if there are any ill effects. SO touch wood all is well. I will keep reporting back

Hi

I have been suffering from pericarditis now for almost 5 months and only returned to work although suffer on a daily basis.

Does anyone have any advise for getting over this. Im on the usual meds following 5 nights in hospital altho ugh i've been in and out ever since.

Some days are better than others but have noticed its become worse of late.

Any help would be hugely welcome.

Chris

I was diagnosed with pericarditis in Sept 2015. Definitely had it last year but was misdiagnosed with viral pneumonia. The thing is though, I have none of this clinical findings. No effusion, no fever, no evidence of anything on echo or chest CT or X-rays. No infection in the blood and no inflammation markets. A cardia work up normal. But, a lot of what you say...sounds like what I'm going through. But chest pain since Sept. One small round of high dose ASA.