Coping With Pericarditis

I came down with Pericarditis in August 2007. Within a week of the first chest pains I was sicker than I have ever been in my life. I had severe muscle weakness in my legs and arms, and couldn’t walk or get out of bed without help. It was all I could do to just lay in bed and try and breathe through the pressure on my chest and the pain.

I was admitted to the cardiac ICU at the hospital for 5 days and then sent home on ibuprofen. Within a week of being home from the hospital I started spiralling downward again, and had to be hospitalized a second time for 4 days to stabilize me again.

Ibuprofen wasn’t enough to keep me from going back downhill, and after 7 weeks of trying different medicines, and being referred to 3 different cardiologists and a rheumatoligist [rheumatologist], we finally found medicine that worked. I take 2400 mg of ibuprofen a day (800 mg 3x day) and colchicine twice a day. (Colchicine seems to really make a big difference.) Gradually the fluid around my heart (pericardial effusion) and around my lungs (pleural effusion) had cleared up.

Very, very gradually I feel like I’m starting to get my life back. I too was also very healthy and active and busy 32 year old mom when the pericarditis came out of the blue. The doctors also ran all the bloodwork and tests on me too and can’t find a cause (no lupus or autoimmune diseases) so they think viral as well.

I am frustrated though because it’s now been 5 months since I got sick and I’m still not back to where I was. I’m am starting to do basic strength training again a couple of times a week (cardio is still too painful), but my biggest concern it that I can’t seem to get off the medicine. Every time my cardiologist wants me to try reducing my meds, I slide back downhill again. I’m wondering if I’ll ever get off this high dose of ibuprofen. I don’t really have side effects from the colchicine but I am worried about long-term effects from the ibuprofen (ulcers & GI bleeds).

Does anyone have any advice on how they were able to go off the meds and how long it took?