UCTD diagnosis with Pericarditis

All of that stuff happened over the last 15 years, so I 've had plenty of repreive until this last July when the Pericarditis started up and this has been going since then. Now, what I wouldn't give for 7 straight days of having my body feel  okay! I did have 3 days at the end of November with absolutely no pain and then two days the end of December! It was bliss. Oh yeah and I did go to Kauai for 9 days in September arriving there in a wheelchair and only 3 days after going to ER. We had nonreturnable tickets and nothing was going to stop me .

Hey Rosie,

thanks so much for your warm welcome. You also made a light go on in my head with the being tired all of the time!I can't remember when I would do simple things like  after going grocery shopping in the morning and coming home, I would always feel so wiped out that I would always want to lie down. I wouldn't though and I just would plow through the day. I was in a car accident 3 years ago that gave me severe whiplash, headaches and neuropathy and when I finally was able to function pretty normally again a year ago, I started going to the gym. I would work out 4 days a week (started slowly) and it bummed me out that my energy never got better from it. I only got more tired! Now since July the gym is just something I pay dues to hoping that I can get back to it.

Post Edited (Nanda) : 2/11/2008 8:48:11 AM (GMT-7)

thanks for the welcome! My cardiologist seemed to be so unsure about why the Pericarditis is still there and even if it is Pericarditis as the effusion he saw was so small but my rheumatologist feels it is there and is just getting exacerbated by the costocondroitis and once that gets calmed down the rest will follow. I hope shes right. No, I haven't seen a pulmonologist. And thanks for sharing how your pain can also migrate at times!

Hi all.

I already posted in the pericarditis forum but I figured I'd post here too as I really don't know what is going on anymore.(If this isn't allowed, my apologies and please remove it )On top of it yesterday I had a tachycardiac event that lasted for half an hour that was finally relieved with a propanol pill. I stopped the NSAID's yesterday also although they gave me great relief with the pain in my hands and feet and some relief with the chest pressure as my stomach is so messed up I need to get it back to normal. I won't repeat the whole story as a lot of info is above already. Ides, thank you I checked out the undifferentiated spondyloarthropathy info and no haven't been checked for that although with my blood tests normal, I don't think they want to go there. there definitely seems to be some correlation with that disease except my joint pain is primarily in my hands and feet. I really am sick of doctors thinking this is an anxiety thing though. Oh and I think it's the tricuspid valve that is leaky on me and don't know if that has to do with the fluid or not in the pericardium.

I posted here last fall when various doctors thought I might have pericarditis (constant Chest pressure/pain sensation, felt better in sitting position, worse lying down, etc.).Originally a small amount of effusion showed but as you all know that can be normal.  I was on a variety of drugs including prednisone, colchicine, and a variety of NSAIDs.In December I began to experience pain and stiffness in the joints of my hands and feet and that continues today.(I take painkillers daily for it, somedays more than others but I have a somewhat liveable life now)It was then thought that I might have some sort of autoimmune disease though once more the blood tests don't show it. Eventually the pericarditis like symptoms  went away around March of this year. In April I was hospitalized after experiencing extreme exhaustion and disorientation(it turned out to be another medication they had me trying as they thought I had fibromyalgia also), and was given another echo by the same tech who originally saw the fluid and low and behold the fluid was gone! Woohoo!

Then, about a month ago I began to experience on a daily basis heart palpitations(really more like skipped or missing beats). This was exactly how the onset of the last years episode began. I paid attention to it for about 9 days and then the chest pressure started to come back so figured I had better get it checked out. Small amount of fluid is showing again but cardiologist(new one) says of course can be normal  but I also now have a leaky valve which apparently is no big deal as is a common one and delayed beats did show on holter but says this also normal amount (although I think he forgot that my internist had put me back on a beta blocker several days before and so weren't as bad when I saw him.). The cardiologist doesn't think I need to see him anymore and am solely seeing my internist, who now doesn't know what it is as I haven't got complete relief from the NSAID's I've tried so far while the increase in percocet temporarily helps the pain. He said I should get complete relief with the NSAID's if it was pericarditis. Is that true? Then he asked if I was having a lot of anxiety about this as in is this anxiety-related and I'm thinking "You have got to be kidding me?!" but then calmly explained that I'm having no more anxiety than the next normal person would have and quite frankly probably less than most because I've already gone through this. His questioning was probably brought up because the skipped beats have been getting worse since I last saw him(weirdly enough it's mostly when I lay down).

I would truly like to hear from others who have had pericarditis that has been difficult to diagnose or if anyone thinks there is some other direction I should be looking. In the meantime I'll stick with the NSAID's(once my stomach calms down) and percocet.

thanks for listening and any help you can give.

Cynthia

best to you,

Cynthia

 Hello, new member here reading the pericarditis issues.  I'm 50 yr old female, completely healthy until one year ago with sudden bladder pain (biopsy shows chronic inflam from I/C) and numerous bouts of pericarditis with thickened pericardium and constant small amount of fluid.  Almost every month another episode flares.  Also have severe headache (constant with no relief,) fatigue, joint and muscle soreness. All labs are negative (sed rate is 1) ANA and ANCA negative, CRP, etc.  This has been going on for 14 months, since Aug 2007.  Nobody in Seattle area able to identify cause.  I have a very difficult time tapering steroids, having to taper 1/2 mg every two weeks, then go back up again...  Steroid withdrawl symptoms almost everyday.  Reacted to mtx po, Imuran and Arava didn't work, Cellcept shut down lungs, now injecting 15 mg mtx but can't increase dosage due to sensitivity to medications and onset of severe headache.  (Brain MRI shows spots, recommended angiogram with possible biopsy.)

Looking back, I was taking sulfa antibotics for months before becoming ill, lost 25 lbs in 8 weeks, had red petechiae on feet and inner arms, dark purpura on lower legs, raised blood pressure (140/94 from normal 95/70) and increased blood sugars to 135 morning fasting.  But nobody put any of these symptoms together and all have now disappeared.

I leave on Sunday for the Mayo clinic in Rochester for cardio work-up and consult with rheumatology.  Haven't worked since Christmas, on disability and the LTD did the mandatory SSD paperwork.  I just want to feel better and go back to work - If I have a job left... 

Anybody had success with the Mayo clinic finding causes for obscure recurrent pericarditis?

Hi Nanda -

Just a thought about the palpitations (skipped or extra beats) - I've had them for decades - sometimes worse than others - with no obvious reason for them determined after multiple Holters, EKG's, echo's, and finally a heart catheterization after having some weird spells that led to another stress test that showed something "abnormal".  The cath result was a clean slate, no blockage, no narrowing, etc.  I even had a 2 week Holter after that!  Finally, the cardiologist told me that he didn't think there was anything wrong with my heart - that the palpitations were caused by GERD - that I should talk to my internist about a scope.  Apparently the Gerd problems can irritate the vaso vegal nerve enough to create the palpitations.   I pay attention now - and they often do correspond with some bloating and reflux - indigestion, etc.  You are under an awful lot of stress and on a lot of medication.  Perhaps this is part of that problem, anyway - so I just wanted to mention it.

I'm sorry you are going through such a hard time right now. 

Lucy