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Diagnosis for Recurrent pericarditis & pleurisy

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I have been suffering for 5-6 years withs this problem of continual pericarditis & pleureisy and I desperately could do with some help. I am now 41 but when I was 35 I went through a stage after divorce of 'catching up' on my lost wild years. I went out with my friends a drank heavily for a few years and stupidly even tried cocaine on and off for about a year.
I started to get Atrial Fibrillation the day after heavy nights of drinking which was painful and very scary. I always ended up in hospital and my heart rate would go over 300 beats per minute easily. They would inject me with Amiodrone to calm my heart down which worked. I calmed down stopped drinking heavily at weekends and never touched cocaine again.
Less than a year later I started to get pains in my chest which was like a hot liquid inside my chest and extremely uncomfortable pain around my heart area. I didnt know what it was until I suffered SVT (Super Venticular Tachycardia) whilst the inflammation was inside my chest and I was in Germany. I was rushed into a German hospital where they diagnosed Myocarditis & pericarditis with an effusion around my heart, which had caused my heart to go into the fast rythm again over 300 beats per minute.
The problem I have had since is that is has kept coming back and ruined my life. The doctors at poole hospital are useless. They say my symptoms are like Lupus but not Lupus. They have tried me on Cellcept, Colchicine, Plaquenil, Azathioprine & even cyclophosphamide treatment at the beginning but nothing ever works. The only thing that ever works is the Steriods (prednisolone) but this just dampens down my immune system to stop it from attacking my lungs and heart.
Every time I get my steriods down to a low dose it comes flooding back and my heart and lungs get inflammed and im in excrutiating pain. Just recently I got my steriods down to 4mg a day but I got a coldsore (Herpes Simplex) and then boom! back came the inflammation inside. My girlfriend also got a sore throat and viral infection at the same time. I think that when my steriods get low I am succeptable to any infections going and when this happens my immune system goes into overdrive attacking all it can in my body. I then have to take more steriods normally back upto 20-25mg a day which starts to help the inflammation and get the pericarditis and pleurisy down after a week.
The Heart unit at Poole are useless (even the top specialist's has heart problems and is always off work so you get a trainee everytime who knows nothing about you), The Reumatologist is as helpful as she can be and has done everything I suppose you should do by prescribing me all these drugs but they dont help. ONLY steriods keeps it at bay but this is not the cure it's just a temporary fix to hold back the storm. I don't want to be on steriods forever which has already taken its toll on my body.
My hope is that someone reading this may have had something like this or is there anyone who can help. Something has caused my immune system to go haywire but it only started happening after I first suffered the Alcohol induced Atrial Fibrillation. Until then I was healthy and energetic but now I am like a hermit.
I feel my doctors are missing something and maybe other treatment could get me back on track.

Here's hoping anyway
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replied August 3rd, 2011
Hello mate. I'm suffering from something very similar. Had my first spell in hospital in February, been in 5 times since then with pleurisy and pericarditis. A it's worst I had a pericardial effusion, which has all but gone now but I'm also stuck with prednisolone treatment as everything else failed (diclofenic, endomethacine, colchicine). I'm trying to get an MRI done to rule out anything more sinister, but I did read somewhere that taking colchicine every day can reduce the prolonged length of recurrences from years down to 18 months or so (so that's what I'm doing).
In my youth I took lots of drugs ( I'm now 37 and sensible), and also had an irregular heartbeat diagnosed in my 20's. I'm annoyed with the NHS, as the whole illness was diagnosed as idiopathic, viral, and pretty much told there's nothing else they can do.
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replied August 30th, 2011
Hi Tb1973,
Sounds like we have the same problem! I have undergone so many visits to the Rhuematologists but we never get a definitive answer. Just the same as you really 'idiopathec'. Something has caused this which only came on after I was getting arrythmia's (caused by heavy drinking at the time). It was only after I started getting iodine injections for heart scans & amiodrone injections to bring the heart beat back to normal rythm that my immune system started to go haywire and attack my heart lining and lungs. It has to be something like this that caused the immune stystem to go wrong. Did anything similar happen to you mate?

Cheers Lee
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replied June 27th, 2013
Have either of you ever looked into POTS (Postural Orthostatic Tachycardia Syndrome)? After many months of testing and landing at a research hospital, I was diagnosed with this rate auto immune disease. If you go to youtube and view the video: Changes - Living with Postural Orthostatic Tachycardia Syndrome, it gives detailed information about this disease. I have also experience the hot burning feeling, only after my heart beat hot too high from running. I have also been diagnosed with EDS (Ehlers Danlos Syndrome). Hope this helps someone.
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replied February 24th, 2015
It sounds like we have been going through a lot of the same things. Recurrent Pericarditis is extremely frustrating! I have had recurrent pericarditis for 5 years, following a car accident in 2010. I am 29 years old and otherwise in perfect health. My age and the fact that I am otherwise in ideal physical shape has limited the sight of the physicians judgment. If I appear it be healthy, I must feel the same too! I don't, I feel like I have been battling an invisible ghost, that I am supposed to be stronger than I am. The first two years I spent in E.R.'s they didn't even take me seriously, I have learned as much as a can about the illness but I know there is a lot left unsaid and unrecognized by the medical community. Do you monitor your blood results for markers of inflammation, the CRP, ESR, and SED rates? do you know what your baseline CRP is to compare to elevated results? I know the CRP is not a way to pinpoint an exact location of inflammation but elevated levels are indicative of the inflammation cascade. I am desperate for a total pericardectomy but the cardiologist I see and the specialists that I was referred to are not supportive of the procedure because it appears that the risks outweigh the potential outcome. I on the other hand have wasted the last five years in an endless cycle of pain and recovery and I can not stand it another day. I am sick of being sick or waiting for another bout. Colchercine is effective enough to keep a flare at a pain level that I can bare, It keeps the pain from reaching the point that you are screaming in agony, but the side effects are equally sickening. I want this to end and I want chance to move on with my life.
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