Hi all. Just looking for some shared general experiences with mild pericarditis and pericardial effusions, any things that trigger it and any things that help it?
Ive been put on colchicine and wondered for those taking it how long it takes to kick in with you and if you still get flares whilst taking a maintenance dose?
Thank you in advance 
Hi,
Feel for you having pericarditis... it's a horrible pain.
Personally I found the colchicine took about 10-14 days to have a noticeable effect, but the difference was night and day for me.
I'm afraid to say I have suffered a flare up of myocarditis while on colchicine, the cardiologist thought it might have been brought on by the heat at the time.
Stress and physical exertion can bring on flare ups so it's important to rest. Leaning forward while sitting can relieve the pain and lying on your right hand side... I also use a wedge pillow at night. Sometimes I use a heat get pack to relieve the pain.
Hi and thank you for answering my questions, thats very kind. I feel like im having a bit of a flare now - so its interesting you have had this too. I think mine has been chronic/recurrent and unfortunately it has taken a very long time to diagnose, its early days with the colchicine and only a small dose at the moment but I do feel its helping. Its really good to hear experiences although I am sorry youre going through it and still getting flares. Thank you.
Hi , I had pericarditis and an effusion , I was on 3 doses of colchicine a day , plus ibuprofen , strong pain relief , I was also prescribed lansoprazole (medication to protect my tummy from the colchicine and ibuprofen ) I was on colchicine for 7/8 months , it took around 4/5 months to get back to fairly good health . In the early days following my discharge from CCU I couldn’t even walk to the bathroom and back without feeling in pain exhausted . I had to build up very gradually to light housework and walking around the house , for the first week I just stayed upstairs resting in bed. On my first hospital admission I wasn’t told how vital complete rest was which is why I ended up being admitted twice more with peri and an effusion . As I’d done too much I ended up seriously unwell and close to cardiac arrest stage . I don’t want to frighten you in anyway but I just hope by sharing my experience then it will prevent others from having the same happen to them . To prevent your condition getting worse then you need to rest , rest and rest more , if you start to feel better don’t overdo it , I made that mistake and needed a few days in bed to get over just a bit of light housework . Sleep in an upright position , I have a vshape pillow that really helps . The cardiologist told me sleeping upright reduces the pain . Take it very very slowly especially in the early days and weeks , accept any offers of help . Take care x
Thank you, thats very kind and helpful of you to share. There seems to be very little recovery information available so I appreciate you sharing this. I hope you are doing well now. Can I ask, did you feel worse/very slow when you got up in the morning ? Thanks again.
You’re most welcome, I’m doing ok , fully recovered from pericarditis but have a few other heart/respiratory symptoms that are being looked into . In the early early days and weeks when I tried to get out of bed I did feel more unwell , I had to just lie in bed and let my family take over everything , my youngest daughter was only 7 at the time so her dad and older adult sisters had to take her to and from school . I found it very difficult and frustrating not being well enough to do anything . One of the cardiologists I saw warned me that if I didn’t rest properly then I could develop chronic pericarditis . That was enough to make me realise that I had to go home and do nothing around the house , I had to start very gradually with very light bits of housework . If you’re on Facebook there’s some very helpful support groups on there , there’s a uk pericarditis one that I found so supportive and helpful , there’s also a pericarditis and pericardial effusion group too . Hope you’re ok today , this condition isn’t pleasant at all . Tahr care x
Thank you. Im sorry you had to go through all of that, I understand your frustration. Ive just had an appointment and off to rest now! I had a little search but couldnt find the facebook groups, one pericarditis one hasnt been active for a few years so i cant imagine its that one! Would you mind hsaring the names of the groups? Thanks again, I wish you well.
I think Ive found the UK pereicarditis FB group but not the one with the pericardial effusion, thank you
Hi,
I can totally sympathise with Pericarditis, and so sorry to hear you have it. I have been struggling with this for over a year now, have been hospitalised 3 times with it and have recurrent flare ups. The pain is horrendous and the pure exhaustion on top makes it so much worse. As many others have said, rest is key. I am 30 years old and always felt like I should be doing more or being active, so I never prioritised rest and therefore suffered again and again.
I am on a high does of Colchicine and have been since November, of 4 tablets a day and have still had flare ups again. I would say it took really a month and a half to feel any affect of Colchicine for me, not saying its the same for everyone. It does seem to be triggered by poor diet so if I eat a lot of processed foods, alcohol is a HUGE factor, and stress. So I try to avoid as much of these as I can, which is easier said than done!
I am finally being seen by a Rheumatologist and steps have begun to begin a course of steroids which I am really hoping to kick this in the butt. I still have a Pericardial effusion which has been lingering around for a long time as I had quite a server cases of Pericarditis.
Fingers crossed if you are experiencing quite mild symptoms that the Colchicine will sort this for you and with lots of rest and knowing your triggers that you don't get any further flare ups
Wishing you all the best,
Melissa
Thank you Melissa, very kind of you to share. I do wish you well, sounds like youve been through it (still going through it) - I hope things improve for you. It certainly is all falling into place/lightbulbs etc! Thank you - it may be the dose needs discussing/tweaking. This is all so helpful, Im grateful to you and everyone here but so sorry its affecting you too.
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