Idiopathic Pericarditis and Pericardiectomy

Hi,

I have had recurrent idiopathic pericarditis for over 2 years. I have been on every drug under the sun. The only one I have been on the whole time is prednisone. I have tried to taper off the prednisone multiple times with no success. I have had more recurrences than I can count. It took 6 months to figure out what was wrong with me initially. I visited mayo in Jacksonville a year and half ago. The specialist there told me it would work it self out in a month or 10 years. He didn't know but he did say I had to ditch the pred. Every time I reduced the dose, it came back. Pain always started in the shoulder area and worked it's way from my ear down my neck and then the typical chest pain.... 2 months ago I decided to visit Mayo in Rochester. Saw a specialist there who recommended a pericardiectomy. The surgeon said it worked in 9 out of 10 people with my type of condition. I am 4 weeks post op. 2 weeks ago I got down to 2.5 mg of pred and inflammatory type symptoms came back. Pain in the shoulder area and trouble breathing. Felt like a full blown attack minus the pain where my heart is located. Under the advice of the surgeon I went back to 10mg and after a few days got back to 5mg. A week after being on 5mg I noticed some minor pain in one side of my rib cage. Next morning woke up with horrible pain in both sides in all of my ribs when taking a breath. Like a sharp stabbing pain only when breathing. Then after a day it moved to my back. High doses of antianflammatories and 10mg of prednisone have taken care of the symptoms. I visited my primary doctor here and he did some blood work my sed rate is high. I'm not crazy! At this point I basically feel like the procedure did not work or maybe I have pleurisy in addition. Anyone have any advice or had a similar situation to me? I would love to get on with my life but it doesn't look like it happening at this point.

Thanks for the reply. I have tried to taper as slow as 1mg every 10 days and still this thing comes back to get me. Up until my heart surgery it only interrupted my life once a month. Now i have been out of work for over a month with no plans to go back anytime soon. I am trying to get the doctors at mayo to let me come back but not sure what can be done at this point.

Raymond, I have been going though he same exact thing for over 2 years now. I would love to talk to you to see if you have had any help since this post. Please contact me at rpresuto at gmail

Thanks