Pericarditis

[livingwith]

In Oct. of 2004 I was diagnosed with a large pericardial effusion. Within a month of having 400cc of fluid removed with a needle, it came back. The Drs. then performed surgery to put a permanent percardial window in to prevent future effusions. I was diagnosed with “idiopathic pericarditis”. I have had shortness of breath and occasional chest pain ever since this happened.
In April of 2008 I started having severe episodes of recurrent pericarditis This has now been going on for...Read the full article

[cindykco]

This seems to be the most recent posting area - I just found this site - and in reading through all the posts, I have lots of company, and still really no answers.

I had a bout of this about a year ago, hospitalized, overnight stay, and sent home with 'nothing wrong' diagnosis.

In October it came back again, and the pain has not stopped since. It is now just a matter of degree how bad each day is going to be. I see everyone is getting about the same treatment, I am determined to get off the prednisone after reading all the horror stories. I was as high as 40, and have myself down to 10, but boy am I paying for it. My arthritis doctor (who I just got referred to a month ago) has me on methatrexate now, I didn't see any posts about this medicine. He says it could take two full months to have any effects. He won't use the cochi??? (sorry can't remember how to spell it since I haven't taken it).

I'm curious if anyone else is having this symptom - I get really really cold, and start getting the shakes so bad I can't hold on to anything, and it'll take as long as an hour to get warm regardless of blankets. clothing, heating pads etc. Of course all the shivering and shaking makes the pain 10x worse too. WIthin a couple of hours, I'm back to the night sweats, needing to change sheets daily.

I am really scared of getting hooked on pain killers, but it has gotten to the point that I am taking oxycodone daily now, along with a suppository for nausea.

I don't know what symptom now is pericarditis, withdrawal from the prednisone, or reaction to the methatrexate. My GP sounded reluctant to refill the oxycodone today, however I had 20 each and have just gotten to the bottom of the bottle issued in October. I am scared that they are going to pull the prescription for this, and I just can't deal with the pain without it. I am only taking it at night, and trying to get through the day on Advil - 12 a day. I drive in my job, and can't be on the narcotics.

I am feeling pretty hopeless about this whole thing - and the doctors aren't much help - he told me today he's doing everything he can do and check back in 2 weeks. I am getting to the end of my coping skills with this constant pain.

Has anyone tried acupuncture? Any nutrition suggestions? I just want my life back. I am also curious about stress as a factor - are most of you in stressful lifestyles or jobs? I know I am, and wondering how big of a part that plays in this.

Thanks for any responses

[dcboyz8]

i dealed with this for about for about six to eights months, you might want to talk to your heart doctor about getting a window. i dont know how to spell it but i will try periocardio window
since i had the surgey in sept... i have only made one trip to the er. that was in nov.
i am feeling great right now. i took myself off the medections i was taking... methotrexate,remicade
preditsone for psoriatic arthritis. after all this they do not know what caused it? i must have had seven doctors all working on me to try and find out what was the problem, and they all came up empty handed. i know how you feel . the doctor had me do a cat scan, i went home, there was a message on the phone, while i was listening to it they called again, and told me to get back to the hospital. i was in surgery in less than 2 hours. this was a big shock to me,i was so scared.

[Kmarie]

Wow! I just joined this forum and are happy to have found your story. I hope you are still checking and can tell more about how YOU are doing. Maybe shed some light on my situation, too.
In Dec. I had a pericardial effusion discovered during an abdominal cat scan. Go figure and very lucky, I know. Until then I had no symptoms whatsoever of a "heart issue." (As you know, once the pain starts, you can not dismiss it-I would have gone to a dr. for it, if had I EVER felt anything like this.) They opted to do an immediate pericardial window surgery so they could biopsy the tissue since there was no cause found and the effusion was so large (600cc). Even the biopsy didn't provide answers. Diagnosis: Idiopathic Pericarditis/Effusion. Problem solved??? Nope. Just a long surgical recovery.
Unfortunately after recovering from surgery, within a month I began feeling terrible chest discomfort. The cardiologist put me on a Medrol pack (steroid regimen) which took away the pain. A month or so later-same thing. Diagnosis: Recurrent Idiopathic Pericarditis. Another month-same thing.
The fourth month my new DR. (a rheumatologist who also determined "no known cause") started me on a high dose regimen of prednisone for 16 days--wait two weeks--do another 16 days and colchicine twice a day for 3 months. I thought (hoped) that would do the trick, but a few days ago...welcome back to 1. Crushing chest pain that gets progressively worse 2. Can't breathe deeply/yawn/sneeze or change positions and 3. Don't even think about lying down to sleep. Currently, I am on the colchicine and have to do an even larger course of prednisone which has its own set of fun side effects for me.
It is perplexing to both drs. and myself why I had no symptoms and was able to get that much fluid, yet once the fluid was gone, the pericardium repeatedly becomes inflamed. Thankfully, in all the tests my heart itself looks really good.
I do feel like my drs. care and are helping the best they can-which sounds lucky compared to others in this forum. But I am an otherwise healthy, active 37 yr. old female who is getting sick and tired of this routine. FYI: The abd. CT scan was only done for unresolved pain that turned out to be a metabolic issue-low thyroid. I take synthroid now, as well.
It is difficult to describe this problem-both the pain and the helplessness-to anyone who hasn't felt it. Of course, we all need to be thankful; there are worse things.
But if anyone knows anything more to try-I would appreciate the reply.
Thank you.