[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.

[shahia]

in the same boat here, recurrent pericarditis. It hit me out of the blue this past April. I am on 5 prescription drugs for this, prednisone / colchicine / hydroxychloriquine /voltarin (& ranitidine to help protect my stomach from all of the above).
I'm so depressed being on this roller coaster of nasty side effects, not to mention the weight gain, and I can't seem to wean off the prednisone without ending up in the hospital when I get to a low dose (have had 4 hospital stays so far).
I am currently on 10mg (just weaned down to this level!) and will likely be there for a couple of months, or at least until I start to 'normalize', whatever the heck that is... I have pain, tightness, and shortness of breath all the time to varying degrees. When I first drop my pred dose, I have a flare of symptoms which are hard to ride out but I'm determined to get off this devil drug. AND never, ever, ever, go on it again :o( The specialist wants me to wean down 1mg per month once I normalize at 10mg. Holy! That means a whole freakin' year from now, I 'may' be off this drug ??!

[dacoon57]

I was releived that I am not the only one having the chest pains after surgury. My first attack was when I was 17 back in November 1975 while in the Navy. I was in and out of the hospital monthly, and on high doses of prednizone(60-80mg a day, and 120 mg of ednisone). In fact the group I worked with would set up betting pools to see what day I would be readmitted to the Hospital. In April of 1977 they removed the front half of the pericardium. My first reccurance after surgury was about 90 days. Since then I have several attacks a year. Problem, they tell me it can't be pericardities since the front 1/2 of my pericardium is gone. My last hospitalization was 11/28/09 for chest pains, they gave me Nitro(gotta love that headach) no effect. My fear now is I'm 52 with high blood pressure, high colestoral and a prime heart attack canidate, who feels chest pains are no big deal since I have them almost all the time now. Some times the are sharp stabbing, dull aching, and sharp burning. After I got out of the hospital I found this forum, and read a lot of the stories. I got off the steroids and I am not willing to go back on them due to the side effects. This forum gave me information so when the V.A. doctor tried to dismiss my thought that the pericarditis was back I was able to get her to researched my records and found the diagnosis of chronic reacurrent pericarditis in 2003 and the fact that it was suggusted I be given Colchine and Etodolac when I have an attack. Do they help.
Should I try them or not.

[shahia]

Hi Dacoon57,
You've really got some (unfortunate) experience with this condition! How long were you on prednisone? I would avoid going back on any steroid drugs if remotely possible. Of the two drugs you mentioned, Colchicine seems to help many conditions and isn't bad for side effects. The Etodolac seems contra-indicated with your high blood pressue and it also increases your risk of heart attack.
I'd definitely try the Colchicine but something else other than the Etodolac if needed. Some people I've encountered on other forums seem to have relief with Colchicine & Ibuprofen combination.

I find this a very depressing & frustrating condition as there aren't any real answers to the cause and the current treatment I'm on is terrible for side effects and I don't even believe it's all really working. I don't understand how I can be on 4 different anti-inflammatories, including prednisone, and still have recurrences when I reduce the dosage, while my tests come back negative for pericarditis (or at least no presence of fluid). So it leaves me baffled and not knowing where to turn next. Kinda like going around in the hamster wheel...

[dacoon57]

Back at you Shahia
I was on the prednisone from Jan 76 till about 1980. I was discharged on a medical in Aug 1977 and I was on 60mg a day. It took about 3 years to get off it. I basically have just delt with the pain as I stated before they all told me I couldn't be having pericadial attacks. But the couldn't tell me what caused it, but the told me what it wasn't. My favorite part of going in the hospital is when I'm asked how long have you been having the chest pains and I say 2 to 3 days, and they follow up with your just now seeing us.
I'm on Pravastatin, Losartan, Omeprazole,(for stomach) and Atenolol. I was kinda afraid of the Etodolac, my wife was on the Colchicine for gout. I guess I will just try the Colchine next time I have the pain.
The nice part of this forum is we all understand what we all deal with and we learned the routine. The only cause they guessed at was that I am allergic to a protine in the pericardium. Which to me explains why I still have the problem.

[Kmarie]

Shahia and Dacoon57-
The 'prescription rollercoaster' is a nightmare! I feel so helpless when the inflammation occurs, I will take whatever they tell me to get rid of it. The prednisone for me has changed my body so completely in the past year, my number 1 goal is to try to keep the flareups down so I don't have to take it.
As for colchicine, I must say it did not work for me. I took it 2X a day from March-Oct with no relief. I should add that since my last post, I found a doctor who looked at the original biopsy from my pericardium (when they did the window) and said there was nothing idiopathic about it. The cells present a chronic autoimmune condition. The Plaquenil (anti-malarial) did not help on its own, so he added Methotrexate (low-chemo) routine, and I do believe it might be helping. In the end, my tests for lupus are only 'marginally positive' but that could be where I am headed. Time will tell. I have no other symptoms than pericardial involvement. I still must rely on prednisone for flares. The pain is both unmistakeable and unbearable.
My question for both of you is...have the doctors ever suggested "autoimmune" causes with your pericarditis? Have you tried any of these meds?

[dacoon57]

I found a interesting article on pericarditis its shot but informative.

www.rjmatthewsmd.com/Definitions/acute_vi_pericarditis.htm