Pericarditis

[livingwith]

My husbands primary Dr. has been sending him to ” knock” on so many varied medical doors in the past 6 months. He has been losing weight, Many times he will go without eating/ even 24 hours or more. Chest pain, exhaustion, constant cough and finally the chest pain became severe enough to warrant a trip to the E.R./ this yielded a 5 day stay. We are so extremely grateful for this accurate diagnosis. However:
My hope is that in this forum others may be able to share if they are getting...Read the full article

[8months2Dx]

It took me 8 months to get a diagnosis and that was partially because I too have numerous health conditions and I had been given Aspirin Therapy for preventing heart disease. The aspirin, being an anti-inflammatory medication, kept the inflammation from progressing. I was on that for 4 months. I took myself off because it was causing bleeding and the doctor wouldn't believe it was the aspirin.

I went to the ER 10 times before getting my diagnosis on the 9th time. The 10th time was for being under treated for pericarditis. It took a referral to a cardiologist while in the hospital to get on the correct course of treatment. Under treatment for my conditions/diseases is the story of my life. It's happened several times. The other problem in getting a diagnosis was that my symptoms did not present with typical ones. I was atypical and so got diagnosed with Atypical Chest Pain. To start it was mostly dull with some sharp or knife-like pains. And I was erroneously misdiagnosed with hypertension when in fact my type of hypertension is a symptom of pericarditis, wide pulse pressure, such as 150/69, a wide distance between the systolic and diastolic with the diastolic usually normal range.

My treatment is Ibuprofen, 600mg tid. At first, it was 500mg bid which wasn't enough which resulted in my 10th visit to the ER. The medication is helping because I don't have much chest pain, heart palpitations, shortness of breath, or weakness any more. I've only been on the correct medication dose for 6 days. I started seeing improvement after the 2 day. I was also given Colchicine but I literally couldn't stomach it because of previous irritable bowel syndrome.

[Debra]

My last post was at the end of August. I am still taking colchicine and aspirin daily(down to one dose each every day now) and my symptoms are almost completely gone. My treatment regime was based upon a study that was done on a group of pericarditis patients--the COPE Pericarditis Study. It was found that those who used these two medicines together did well--in that they did not tend to relapse. In my case, it has taken longer to get results than those in the study. I am just greatful to be recovering. It was tough and extremely painful to have this illness. They believe mine was a result of having a virus. The colchicine did cause some diarrhea--which I tried to control with Immodium. When it got unbearable, we decreased the colchicine dose. I am now taking 0.6mg daily and am not bothered by it. You can read the COPE study results on line --just do an internet search for it.

[Linny]

I have had recurring pericarditis for about 7 years now - I am a 21 year old girl senior in college and it is not a fun thing to have. I agree with most everyone on the Colchicine - it really helps and every doctor I have spoken with recommends it! However it does give a lot of people stomach pains - I was lucky not to have them only occasionaly would I get stomach aches. While being on that I was also on 500 mg of Naproxen once or twice a day along with the Colchicine when it was really bad. Since at that time I was only about 18 years old they didn't want me on too many of the meds because I was so young. So i just went to 500 mg of Naproxen twice a day - then took myself to one time a day and then eventually to every other day untiL I completley took myself off of it.

I had no problems for about 6 months until a few weeks ago the pains started again and I had to go back on the Naproxen - twice a day for 2 weeks and now I am off of it again. They are most likely going to put me Colchicine because when these flare ups happen I am down and out for about 2 weeks until I can resume all normal activity.

Also something that might help is Indomethacin - that really helped me but also gave me the stomach pains - not everyone is bothered by it so you might want to consider that medication - it works for some and doesn't do anything for others. I carry Vicodin with me at all times in my purse or wherever I go because if I start getting the pains it is so hard to breath and so I will take 2 Vicodin's sit against the wall or bed wherever I am at the time and lean forward. It helps with the pain until the Vicodin kicks in - this usually saves me a trip to the hospital and I take a Naproxen right away as well. It usually helps most people I have talked to when they are feeling real bad with the chest pains. So to prevent it however I would say Colchicine or the Indomethacin maybe even a high anti-inflammatory like Naproxen is your best bet! Good luck with everything!

[8months2Dx]

Hi Linny,
You wrote:
"I had no problems for about 6 months until a few weeks ago the pains started again and I had to go back on the Naproxen - twice a day for 2 weeks and now I am off of it again. They are most likely going to put me Colchicine because when these flare ups happen I am down and out for about 2 weeks until I can resume all normal activity."

It doesn't sound as if you are getting the rest you need for a long enough time. That is one of the keys to healing pericarditis. I'm surprised your doctors keep you off activities for only 2 weeks. That's not long enough from what I have read and researched.

If you're located in the US, try reading articles by European researchers and cardiologists. I've read articles found on their websites about the need to keep a patient on bed rest (not confined to bed) for 4 weeks or more. This means no exertion, exercise or lifting, for 4 weeks or more. Also I found a website, US, which states doctors in the US follow the European protocol, because the US doesn't have any protocol for diagnosing and treating pericarditis. That was shocking.

I've had three complications with my pericarditis. I have mild myocarditis, a pericardial effusion, and atrial fibrillation.

After 4 weeks on bed rest, I got the okay to start with some walking, but nothing strenuous. I find that for the most part I have very few symptoms if I don't push the exertion. I am still not lifting heavy objects and I take a slow, easy walk.

I am still on all my medicines. My Ibuprofen and Colchicine were reduced at the one month mark. I take 4 to 8 - 200mg Ibuprofens per day (I usually take 4 per day) and 0.6mg of Colchicine per day. I am on two heart medications for the a-fib. I'll be on all the medications for 4 months total, except the Ibuprofen. The European protocol is 3 to 4 months on the Colchicine and one month on an anti-inflammatory. To lessen the chances of stomach, esophagus, and throat problems I am on Nexium 40mg per day. I also use Culturelle everyday to maintain normal flora.

I found that I could stomach the Colchicine by using the Culturelle. For me it worked best by dividing the dose of Colchicine and taking it twice a day. I'd take it until I got ill and then backed down to once a day for one day. Finally, I'd return to the original dose the next day and repeat until I got sick again. It usually took about three days for me to get ill on the normal dose.

Linny, I would certainly read as much as you can about your condition and the correct protocol for treatment. Then I'd print it off for your doctor so they can see what needs to be done. Something needs to change in your treatment or you'll be visited by reoccurrences of pericardits for years to come. Although pericarditis is a mild condition for most people, you can develop some serious and potentially deadly complications as I did. Atrial fibrillation can maim you permanently, a stroke, or kill you if left untreated.

Get some proper care by your doctor and take care.

[lindatill]

i was wondering how you developed pericarditis? i know there are no answers sometimes, but i also have chronic pericarditis. i have dilated cardiomyopathy at age 36. i have been treated for 6 years now. i am just out of the hospital for the 3rd time in just over 3 months. i developed pericarditis after a icd implant. my electrophysiologist penetrated the heart wall during my implant. i have had 10 shocks since my implant in march 06. i have since developed atrial fib. that has resulted in clots in my lungs and heart. i have just gone on coumadin to thin the blood. i took a series of clot busters to dissolve them. i have wondered about many of the treatments that i have received, but none have helped long term with the pericarditis. any help???

[8months2Dx]

i was wondering how you developed pericarditis? i know there are no answers sometimes, but i also have chronic pericarditis. i have dilated cardiomyopathy at age 36. i have been treated for 6 years now. i am just out of the hospital for the 3rd time in just over 3 months. i developed pericarditis after a icd implant. my electrophysiologist penetrated the heart wall during my implant. i have had 10 shocks since my implant in march 06. i have since developed atrial fib. that has resulted in clots in my lungs and heart. i have just gone on coumadin to thin the blood. i took a series of clot busters to dissolve them. i have wondered about many of the treatments that i have received, but none have helped long term with the pericarditis. any help???

I've read that hypothyroidism can cause pericardial effusion. And one of the conditions doctors test for before treating pericarditis is hypothyroidism. I had long term under treated hypothyroidism. I have a friend who had the same situation as me and got pericarditis. I think there has to be a correlation between the two conditions. I am on a forum for thyroid disease suffers and several people there also have peridcardits. Have you been on COPE? The treatment is mentioned above by another poster. That's what I am on. It's the Colchine protocol. It's supposed to curb recurrent pericardits. It's a again a European protocol for treating pericarditis. It's used to treat recurrent pericarditis. I don't have recurrent pericarditis. However, I've had pericarditis symptoms for 8 months (possibly more after looking at my journal).

I understand from reading that heart surgery can cause pericarditis too.

They tried anticoagulants on me for the a-fib but found it didn't work. Also I have had internal bleeding when I took long term aspirin therapy (162 mg/day). So I am at high risk for bleeding.