seeking advice for recurring pericarditis

 

My 23 year-old son, William, has been suffering from pericarditis for six years. He has been treated by many medications - but only large doses of prednisone have been able to keep the discomfort at bay. Even then, dropping below 20mg causes a relapse and the side effects have been devastating to him. The only other medication that has shown any promise at all is imuran and this has only shown marginal benefit.

He is at the end of his rope and would rather not live than to continue. He has been tested for many things but no cause has been found.

Given his level of desperation, we are considering encouring him to undergo pericardiectomy. We would greatly appreciate any feedback or advice. In particular, if you have had a similar experience and worked with a doctor that seemed to have solid knowledge of pericardial disease and would be willing to share that contact information, I would be very grateful.

We would be willing to take him anywhere in the U.S. for treatment, though we reside in Pa.

AmyDB

Hi AmyDB, I just wanted to take a moment to welcome you to Healing Well forum.  We are happy to have you.  I am sorry about your son's medical problems.  I don’t know much about pericarditis so I am not going to be of any help I am afraid but as Tea stated there is a thread dedicated to Pericarditis and pericardiectomy's that we keep going at all times.  Please do feel free to visit it and post, as you like.  There are some very knowledgeable people there going through the same thing and can give you the best advice and suggestions I am sure.  My thoughts and prayers are with you and your son.... take care Elisha https://www.healingwell.com/donate  

Rick H welcome to this forum

You told you have been cured of recurring pericarditis and now still being treated, did you ment that your have still some controls left, but you have no symptoms (pain, extra fluid etc.)? I am interested, because I have also had this disease some years and I have tried many medications but I have still some sympoms left. Could you please tell me more about your treatment, what kind of medication did you used and how long? Every information about this recurring pericarditis interest me. It is encouraging to hear that you have cured from this disease, thanks for your post here.

Tea

Rick H,   Thank you for your quick answer to me, its great to hear that you are fine. I have tried also those medicine but they didn't help me, I have no overweight and my sodium in ok.  Now I try azathiophrine and steroid. I hope this combo works. I have been sick about 4 years.  At first I healed quick, but sudden i got relapses and now I have this chronic recurrent idiopathic pericarditis. Well,  being sick a long time takes to heal also some time....   Take care.   Tea