persistent pericarditis

[K0510]

I've had six brutal attacks of pericarditis now since Aug. 2008, the most recent attack sent me to the ER again just two days ago.  .  Three cardiologists, a rheumatologist, and my primary care provider all shrug their shoulders and scratch their heads.  They don't know what to do, in the meantime I live in daily fear of that crushing chest pain and inability to breathe returning.  There is zero information available for me here as all of the medical personnel I've seen including the six ER dr's don't have a clue or any answers as to why this keeps happening.  I'm losing hope of getting any real medical help.  I take prednisone daily (again) along with a long list of narcotic pain meds to keep me functioning, yet it's still hard to breathe.  I don't like the side effects of the prednisone and too much narcotics is never a good thing to live with.  It's a little redeeming to see there are others who suffer recurrances as some dr's have even thought it was either all in my head, or I'm a drug addict just acting out to get the pain meds. Ha! They don't know me at all. I would give up the excruciating pain in a second if there were any answers for me.  


This discussion is related to Persistent Pericarditis.

[K0510]

I'm sorry to hear of your diagnosis.  I agree, I wouldn't wish this pain on anybody! My story has taken a turn. My RH dr. finally was able to confirm through my blood work that I have rheumatoid arthritis and lupus, so I've got a double whammy when it comes to the pericarditis. The pain and shortness of breath are not any easier to live with. I had a fantasy that when a dr. finally said "here's what you have, and here's how you're going to feel better", that I actually would be better.  The crossover of the two diseases seems hopeless.  I take methotrexate injections weekly, Enbrel injections weekly, my daily meds are so long I couldn't even begin to list them but I do encourage the IB daily as long as you can tolerate it. My body doesn't want to allow me to stop the prednisone, but I have gotten my dosage down to 10mg a day which my RH dr. is dancing a jig over! I do not have small children, so I can't even imagine what your days are like trying to keep up. It's all I can do to take care of myself and the small daily tasks I can manage. It's my understanding it's possible the idiopathic pericarditis can disappear as quickly as it appeared, so prayerfully yours will and soon. I fear mine is here to stay after 2 years of dealing with it.  The most important thing is to keep the inflammation down to minimize the possibility of heart attack, or thickening of the pericardium, which I now have. Thickening that goes into the left ventricle, so I can't stress enough taking the IB to keep that inflammation down. Open heart surgery is the only option for me to correct whats done. It took a year and a half for a diagnosis and cause of my pericarditis, and it was a long excruciating time during which I took way too much prednisone because that's the only thing that gave me relief, along with the pain meds. If I could pass on one piece of advice, if you can at all possible stay away from taking prednisone, DO! Trying to get off of it has been the biggest challenge I've faced aside from getting a diagnosis. Sometimes it can't be avoided, though like me. It was that or face hospitalization and possible heart attack.  Much luck to you for a complete recovery! ~ K

[bearcreek]

I'm going on my 5th month of persistent pericarditis.  I wouldn't wish this on anyone.  The chest pain is really bad and the fatigue is debilitating.  There are times when I can't move from my chair for hours.  The more activity I do, the more I hurt.  This is really hard to take considering how active I was before my onset of pericarditis.  I've been tested for any and all underlying causes of pericarditis and the determination is that the cause is idiopathic.  The good news is that other than the pericarditis, I'm very healthy.  I'm taking 2400-3200 mg/day of ibuprofen plus colchine.  Ativan and Vicodin help me sleep at night (lying down, not in a chair), but I limit those to night time because I'm a mother of 3 and need to be on top of things during the day.  Has anyone had any success with any other types of medications or treatments?