DIAGNOSED WITH PERICARDITIS RECENTLY

Hello whitewolf,

Welcome to HealingWell.  I understand your concerns and also your anxiety re the pericarditis.  I am so happy to read you have a supportive and loving bride. 

Under normal circumstances, the two-layered pericardial sac that surrounds your heart contains a small amount of lubricating fluid. In pericarditis, the sac becomes inflamed and the resulting friction from the inflamed sac leads to chest pain.

In some cases the amount of fluid contained in the pericardial sac may increase, causing pericardial effusion.  It is a good thing you did not have a large effusion. 

The cause of pericarditis is often hard to determine. In most cases doctors are either unable to determine a cause (idiopathic) or suspect a viral infection. So your in the same category as many other people and the cause of your percarditis is unknown. 

Wondering if you have had an MRI (Magnetic resonance imaging) of your heart?  This technique uses a magnetic field and radio waves to create cross-sectional images of your heart that can reveal thickening or other changes in the pericardium.

If you don't respond to NSAIDs (Motrin)  or colchicine or if you have recurrent symptoms of pericarditis, your doctor may prescribe a steroid medication such as prednisone.

Acute episodes of pericarditis typically last from one to three weeks, but future episodes can occur. about one in five people with pericarditis has a recurrence within months of the original episode. ^{Resource: Mayo Staff}

I wish you the best and let us hear how you are doing.  We also have a great anxiety forum if you want to join us there also.

Kindly,

Kitt

  Hi White wolf

  Sorry I lost the current thread we were using & also wasn't keeping an eye on the site.

 Clchicine is a gout medicine for inflamation which I was on for 18 months & NSAID's along with the reatment & it didn't work    My feeling & it is only an opinion of mine is that Colchicine is probably for fairly mild cases , My case was way underplayed with 2 differnt Hospitals telling me I wasn't so bad     I have read all the books& talked to each Author of these books,  since this condition is rare & still very unknown since it is so hard to gauge damage with out seeing it.

 Also be careful what you read ( including me) since everybody's case is different .

 The internet can be good & bad with info & yopu need to weed out the info without panic.

 This is a very fixable condition when handled by the right people. There are many posts from previous forums that are helpful. 

 I will do a better job of looking at the forum or you can email me as my email box on the side is there.

 I am no expert but have lived it & now have my life back, Many prayers & positive thoughts to you,

              Boog

Hi Derek,

  

  I don't know if you read some of my posts from earlier threads but I originally developed Afib in 2005    I had an Ablation that went bad & damged the pericardium, My situation got worse as the Pericardium became more inflamed    I was told conflicting info from many Cardioligsts , bought all the books, even talked to the Dr's that wrote the books, they were all very nice but this is such an obscure condition since it is very tough to detect haw bad things are , even with all the scans & tests they told me I was moderate, when the Surgeon told me after my stripping that the Pericardium was like a think white blanket & was far worse than tests showed,

 I tried all the treatments, Colchicine etc   NSAID's  for over a year. Everyones situtation is different though. I have heard of a few people who had success but they caught it early. I was also told I could exercise with it getting worse & that was wrong too, It was far worse about 1 hour after exercise & would take 24 hours for the pain to go away.

 Don't be hasty, Have faith they will get a grip, just make sure you have the best people working with you, I went to several BIG name Hospitals

 & experts & even they were not fully up on exactly how to deal with things.  There is a little envelope next to my post that allows you to email directly to me, Feel free to write direct, some people have even called to talk, I can email that info if you wish, I had other serious issues with it & I couldn't be better now so Keep the faith !!

                 Steve

 

Gem,

Very sorry to hear about your situation. I'm in a situation not all that different from yours. How are your pains? Do they move around at all? I have them almost constantly. And like Steve's, mine are worse after I do even very moderate physical activity.

Hello Everyone:

I was diagnosed with pericarditis in October 2010, and the medication that has worked best for me is prednisone. Colchicine did not work to reduce the severe pain. However, prednisone is a steroid that cannot be taken long term, but I can live without pain, and the other symptoms mentioned above have disappeared by its use.

I would like to know about the pericardectomy, and what does the long-term studies reveal about the procedure?

Thanks!

Hi Everyone,

I have been suffering from Pericarditis now for over 5 years! Mine is a little different because I have Lupus as well. I get yearly Echo's, EKG and Chest Xrays and the results always show my heart to be fine and no fluid build up in the lining. So my Pericarditis is really caused by my Lupus overreacting and attacking my heart. The first couple of years the pain wasn't so bad with the Pericarditis, I could take 2 Advil's or an Aleeve along with a small dose of Prednisone (5mg) and I would be fine, but for the past 3 years now it has gotten worse and now I suffer from chest pains daily. The hardest thing for me is laying down flat. Anytime I try to sleep the pain and pressure gets really bad that I can't handle it, so for the past 3 years now I sleep sitting up almost every night. When I am sitting up or standing I am fine, I can feel the pain when I take a deep breath, but I am able to go about my daily routine....I am even able to work out with much discomfort. But when I try to lay down or when I walk outside in the cold (I live in Chicago) the pain is really bad and I feel like I can't catch a breath.

I recently just went to go see a new Rheaumatologist at Northwestern since my current Rheumy didn't know what else to do for me to get rid of my Pericarditis. My new rheumy had me go see a Cardiologist at NW and the cardio said I have exhausted all medications already to get rid of my Pericarditis and that surgery is my next option. I have tried, Prednisone (Steroids), Colchicine, High dosages of Ibuprofen (3200 mgs), Methotrexate & Cellcept (Immunosuppressants) and none of these meds have gotten rid of the Pericarditis.

I'm slightly freaking out cause I am only 31 and don't want to have open heart surgery, but it sounds like my docs don't know what else to give me in terms of medications. I'm getting any MRI done on Monday and the results should hopefully give them a better idea of how inflamed the lining is, if there is any scarring around the heart and if surgery is really the next step.

Anyone have an input on this Pericardial Stripping surgery? How risky it is? If it does actually does cure Pericarditis once and for all?

I (male 60 y/old type A) had Pericarditis for about a year starting in 2009. Tried most the drugs listed in this thread but none did the trick until I went to UCLA Med Center where they combined my existing Prednisone therapy with Celebrex. After another four months of a gradual decrease in my Prednisone dose the Pericarditis was gone and I was back to my type A lifestyle. I have lived a normal and active lifestyle for the last year.

I am a great example of getting a second opinion. My primary hometown Cardiologist 'final answer' to my Pericarditis was to crack my chest and remove my heart sack; no thanks. The UCLA Med Center fixed the problem without surgery and for that I am thankful. I'm sure you know of other hospitals that deal with this, like the Cleveland Clinic, Mayo Clinic, both are rated top drawer for heart issues.

Good luck, it's fixable.

YukonJack said...
I (male 60 y/old type A) had Pericarditis for about a year starting in 2009. Tried most the drugs listed in this thread but none did the trick until I went to UCLA Med Center where they combined my existing Prednisone therapy with Celebrex. After another four months of a gradual decrease in my Prednisone dose the Pericarditis was gone and I was back to my type A lifestyle. I have lived a normal and active lifestyle for the last year.

I am a great example of getting a second opinion. My primary hometown Cardiologist 'final answer' to my Pericarditis was to crack my chest and remove my heart sack; no thanks. The UCLA Med Center fixed the problem without surgery and for that I am thankful. I'm sure you know of other hospitals that deal with this, like the Cleveland Clinic, Mayo Clinic, both are rated top drawer for heart issues.

Good luck, it's fixable.

My son has had recurrent pericarditis constantly since 2000. He is now 29 years old. He has tried every medication under the sun, visited both a rheumy and cardiologist at the Cleveland Clinic as well as at Johns Hopkins and at UPMC in Pittsburgh. Nothing works except prednisone...he has been on an average of about 20-25mg/day for nearly 12 years!!! A drop in dosage of even 1 mg/day below that threshold and it comes roaring back. He has some semblance of a life, but prednisone has taken much of it.

He apparently does not possess one of the extenuating conditions that would make pericardectomy advisable - at least at his age. None of the doctors is recommending surgery.

Any words of wisdom or encouragement is greatly, greatly appreciated.

I am Indycoman's son.....was looking around for help and know that had to have been my father that posted. I am sure by the detail that is my case....Going through a flare right now at 25mgs of pred. Sick of it but never give up.....work 12 hours a day at a stressful job and shovel the prednisone daily. It will be the death of me for sure but the bills still need paid. Thinking surgery may be the next option only because I can't take it much longer......they think it was viral and it is idiopathic......just an extreme case I guess. Hang in there everyone. Could be worse for all of us.

- Bill

Hi kitt...i really can't right now. I am a supervisor at a fast paced call center....it's really pretty much hell on earth while going through a flare especially. Can't sleep, can't breathe, can't eat.....i've applied for disability to get some relief from work, just to try to get this under control but got turned down. I guess 12 yrs of hell wasn't enough to justify it. Lucky to be alive but don'r feel it much when i'm flaring on 25mgs of prednisone. Really just don't know what to do at this point.

Hi Everyone,
I am so glad that I found this thread, because like most of you, i feel pretty alone is this disease because no one else really seems to "get it." I have had reoccurring idiopathic Pericarditis for over ten years but I wasn't actually diagnosed until 6 months ago. Since being diagnosed I have been set up with a Rheumatologist and a Cardiologist to try and figure out a why, and a how to fix it. Of course, there is no why, like so many of you can understand (they think its viral) but I am running out of meds to try. We have tried every kind of non steroidal anti-inflammatory and those have done nothing.(aspirin, Motrin, plauqenil, colchisine) We have found that usually (last two episodes) 60mg of Prednisone does the trick and then i have to do a long and slow tapper to not have a relapse, but I am concerned right now because the prednisone, the awful but effective drug that it is, usually only takes 24hrs to kick in. I have now been on the 60mg for three days and though i feel a slight improvement in the pain, i am still taking 20 mg of Oxycodone (every 4-6 hrs) to get some sort of pain relief.

I guess my biggest frustration and fear is that none of the doctors are treating it like it is that big of a deal even when i tell them it is debilitating. The other things is, the doctors have only been able to see the pericarditis on a chest xray and heard the rub when the pain is at its most severe, so i hesitate to try any out of state specialists (i live in CO) because nothing usually comes up in the blood work or other tests unless i am right in the middle of an episode.

And I also ran across a center in Cleveland that i am wondering if anyone has tried:
http://my.clevelandclinic.org/heart/departments-centers/pericardial-disease.aspx


I guess I am mostly here to share my story and just know that there are other people out there trying to get through this. Thanks to everyone for sharing your experiences, it has really been a big support.

Laurel