UCTD diagnosis with Pericarditis

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Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 2/10/2008 9:14 PM (GMT -6)   
Hi all,
First off, this seems like a very caring board and I don't know how you all keep on going with what you have! My hat is off to you all!
I had been diagnosed with Pericarditis last July( I was over on the Cardiology forum before this.). My first cardiologist put me on  NSAIDs, colchicine and then colchicine and high doses of Prednisone 60 mg for 6 to 7 weeks which was then tapered by my second cardiologist. Although I got some relief from the chest pressure and pain, it didn't take it completely away. (It did temporarily stop my hair from falling out which it previously had beenand is now worse than ever). I also developed the moon face, thick neck, severe muscle cramping and a horrible acne rash on my face.My second cardiologist had me on Plaquenil, colchicine and NSAIDs as well as Percocet.I was also put on Acyclovir as my herpes titers were extremely high.At that time my blood pressure also skyrocketed and am now on blood pressure medication. In November, I had some temporary relief and my GP tried to reduce my BP meds as I wanted to get off of them. I ended up with really bad edema in my legs and ankles and so was put back on the ones with a diuretic.Besides the chest pressure and pain, I also feel like it is difficult for me to get a full breath of air. Needless to say, I also experience extreme fatigue at times. End of December, I started to have joint pain in my feet and hands (which I had a year ago and then it went away?) ( specifically my thumb joints , the ball of my feet and now the bottom of my heels). I have since felt it in my knees, wrists and elbows also. Anyway 6 months two cardiologists , an infectious disease doctor and two rheumatologists later  I was then diagnosed with Pericarditis,UCTD,Arthritis and Costocondroitis. At the time that I was given this latest diagnosis it was also discovered that my liver panel was really out of whack, so I was pulled from all meds. It's starting to clear up and I've now been put on Mobic and Ultram ER which seems to be helping but doesn't take all of the pain away.
I don't know if you can answer any of my questions, but I'm wondering if any of you have  joint pain that seems to be constantly migrating. I mean I can start the morning with my feet hurting, then it goes to my hands, then I get chest pressure, then it moves back to my feet etc. It's driving me batty! I think my rheumatologist is going to put me back on the Plaquenil but I don't see her for another two weeks. Also my ANA was positive but it was low positive. I feel like I am babbling but these last six months have been crazy for me and  it feels like this is far from over for me.
thanks,
Cynthia
 
 

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/10/2008 9:26 PM (GMT -6)   
Hello Cynthia!!

Welcome to the forum. You have found a very helpful, caring group of people here.

I'm sorry you are having so much trouble. Do you mind telling us how old you are?? The problems you are having can actually occur in fairly young people if they are the result of autoimmune issues (lupus, uctd). The pericarditis is one of 11 criteria used for diagnosing lupus, as is the positive ANA. If a person has 4 of the 11 criteria, they are often dx'd with Lupus (for more info on this click the link at the end of my signature "4 of 11".

The pain in your feet is also common in connective tissue diseases (lupus/uctd) it is probably plantar fascitis, which hurts like a bear when you first stand in the morning, improving somewhat after you are up and around for a while and then becoming worse each time you stand after being seated for a while. I had this for two years straight and thought I would never get relief from it. I couldn't even stand some mornings. I hope yours disappears much faster.

There is a lot of helpful info in "Lupus Resources" topic (link in my signature). It includes suggestions from members and info on how to get the most out of your doctor appointments.

Glad you found us and I hope you'll update us after your dr. appointment.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 2/10/2008 9:42 PM (GMT -6)   
Hi Rosie,
 
well thats whats crazy as I am a ripe 53 y.o. tongue   and from reading I know that this is generally too old for Lupus. Then again, I've also had a variety of things happen earlier in my life including being diagnosed with hypothyroidism (cold hands and feet, hair loss),having infertility problems(ended up with a total hysterectomy), endometriosis, and bowel obstruction caused by intestinal adhesions.

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 2/10/2008 10:40 PM (GMT -6)   
Hey, Nanda!

Just want to say welcome from one 53 y.o. to another. Wow, you have had some very interesting things going on your life. Aren't you ready to be done with that??? I"d much rather be getting ready for a wonderful trip or even just 7 days straight of feeling good. This is a very caring forum. I'm glad you starting posting.

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/10/2008 11:04 PM (GMT -6)   
LOL Emmie!!

Hey Nanda . . . I'm 55 and I didn't start getting help (from doctors) for my issues until about 5 years ago. I just thought I had way less stamina than others and I didn't realize that a lot of my symptoms weren't normal for everyone. Until I started reading about all this weird stuff, it never dawned on me that all my "little" issues were part of one big problem.

Your bowel issues could also be autoimmune. The biggest part of our immune system is in our gut and intestines. When the immune system goes wacko and attacks our own healthy tissue, that is "auto-immune". Connective Tissue Diseases, including Lupus are auto-immune. So is chrons, epilepsy, asthma and some thyroid problems. Lupus can attack the lining or covering on any organ. Thats why we each have such different symptoms. That's also why the doctors have SUCH a hard time diagnosing lupus. It mimics so many other diseases that it goes undetected for decades in some people. Your cold hands may be from Raynauds too. Another autoimmune issue where the blood vessels in the hands and feet can constrict and limit blood flow causing cold hands. They sometimes turn red or white too. *sigh* so much to learn. This forum was such a big help to me.

Sorry you are having so many problems. I hope we can help you unravel some of it.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 2/11/2008 10:36 AM (GMT -6)   
LOL Emmi!
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 tongue .
 
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)


Harmony
Regular Member


Date Joined May 2003
Total Posts : 56
   Posted 2/11/2008 11:27 AM (GMT -6)   
Welcome Nanda!
I hope you find as much support and information here as I have. I have certain joints that hurt constantly, and some where the pain migrates as you mentioned. I have the same thing with my muscles (I have fibromyalgia too). I will turn 50 this year, so am right behind you! Fatigue is usually a major problem with lupus, but with your struggle to get a full breath, I'm sure, is exacerbating your fatigue. Is your pericarditis expected to clear up, or is it ongoing? Eight months is a long time. Have you seen anyone in pulmonology? Does your cardiologist think that could be helpful?

I formerly worked in doctor's offices and the doctors there would write patient's letters to their gyms explaining the length of time the patient was unable to attend, and the gyms would usual reimburse them for those months. It might be worth a try. And good for you making it to Kauai-- I think we would all make it there on a stretcher if it was the only way! LOL

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 2/11/2008 11:40 AM (GMT -6)   
Hi Harmony,
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!

chinacat
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/28/2008 11:27 AM (GMT -6)   
Hello, I can not begin to tell you all how happy I am to have found this site. I have never used a message board before so bear with me, I've got a long story to tell. I am 33 years old an was diagnosed with pericarditis over a year ago by my general care doctor. I was treated with plain old Advil and it went away. Then it came back, over and over, and every time I went to the doctor he told me that I had a pulled muscle or a chest cold b/c my EKG showed nothing. Then on Christmas day 2007 I went into cardiac tampanade. I had been sucking up the pain for weeks, telling myself that it would go away, sleeping upright on my couch for 30 min at a time. I almost died on the way to the ER and was lucky to find one of the greatest cardiologists in the US. He drained over a pint of fluid from around my heart and then because of confusion over my insurance coverage, I was released from ICU after 2 days! Two weeks later the pain was back and my cardiologist sent me to a different hospital where the staff was very caring and concerned. The fluid had returned but was not in an accessable area. so the pericardial window was out of the question. In addition, fluid had accumulated around my lungs. My cardiologist set me up with a rheumetologist thinking that I had lupus and they put me on 40 mg predisone to start. The frustrating thing was that they can find NO cause for the pericarditis. All of my lab work comes back clean, with the exception of elevated C proteins. They put me under the category of "medically fascinating" because I have been living with this for over a year and a team of 5 doctors is completely stumped over my case. In addition, they can not figure out why the problem had always resolved itself until now. They started me on a steroid taper. I experienced the same migrating joint pain in my ankles and knees and sometimes wrists every morning for the first few weeks of the steroids. There were days where I couldn't walk for the first two hours of the day. Once I had tapered down to 15 mg, those pains stopped so the rheumetologist told me not to worry about it! I tapered off of the steroids last week (no heart problems until then). Two days later, I was back in the ER with severe pain in my shoulders and chest. The ER doctor did not take me seriously and refused to do an echo because my EKG was clear. They put me back on the steroids and doped me up with pain meds and then sent me home. Monday my rheumatologist put me back on 40 mg prednisone (I am already the size of a small whale, if my checks get any bigger I won't be able to open my eyes) and decided to send me back to the cardiologist. They have no idea what is causing this and made it clear that it may take YEARS to figure it out. I have an 8 year old son who is terrified that something is going to happen to his mother. I am getting scared too. This time the prednisone is not making the pain go away, and I am popping Percocet like tic tacs in addition to 500 mg of naprozen twice a day. Today I go in for another echo and heart xray. I am praying that something shows up that will start to solve this mystery. I can not live the rest of my life on steroids, waking up every morning wondering if the pain will be back that day. Thank you for letting me vent. I have not had the opportunity to talk to anyone who has experienced what I am going through and it is comforting to know that there are people out there who understand. Thanks

vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 2/28/2008 7:19 PM (GMT -6)   
Hi Chinacat. I have been having chronic pericarditis for 2 years. My sed rate was 150 & I had to spend 5 days in the hospital & icu when this started being a problem. I too had to sleep in my recliner & was having really bad pain.  At first the hospital said all the tests came back negative for lupus & rheumatoid arthritis. My cardiologist told me to see a rheumatologist who ran his own tests & found out that I have lupus. We have tried several medicines to try & get this under control. I started out with plaquinel, colchicine, prednisolone,tried methotrexate pills & then shots 25 mgs. Finally my rheumy called & discussed my situation with my cardiologist. The cardiologist said he feels I have a very active case of lupus & we need to treat it aggresively.If I can't get some control soon I will need to get a pericardial window.So right now I am on 20 mgs of prednisolone, 400 mg plaquinll, 150 mg of imuran. I just wanted to say that you are not alone in this & I feel better just knowing that there are others here to share with & get support from. Im sure you will find lots of friends & support here too. So welcome to this group!   

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 2/28/2008 9:04 PM (GMT -6)   
Hi chinacat,
you might also look over in the heart forums about your pericarditis. There's one there specifically for pericarditis with a lot of good info to read if you haven't already. My second cardiologist took mee off the prednisone as that can at times make it easier to reoccur. You might want to also look up colchicine for your pericarditis as well as its supposed to reduce the chance for it returning.

Post Edited (Nanda) : 2/28/2008 7:18:59 PM (GMT-7)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 2/29/2008 12:03 AM (GMT -6)   
Welcome China and Nanda...so so sorry you are suffering so much. I don't think you'll find a better group of people. There's always an "ear" to listen and a "shoulder" to lean on and lots of sage advice from people who know where you're coming from. My prayers are with you. God Bless you, Judy

Scrnboy
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/6/2008 9:00 PM (GMT -6)   
This is for my wife, who is largely computer illiterate. As long as I have known her, she has had a pleuritic type pain in her chest. 3 years ago she was diagnosed with a large pericardial effusion and underwent placement of a pericardial window ( the effusion has not recurred and workup was negative). She has been treated with colchicine for a while, but has continued to have intermittent pleuritic pain, which responds to NSAIDS and is gone for a few months, only to recur. The past week she has had it quite bad, only now with diffuse joint and muscle pain and fatigue. NSAIDS take the edge off everything only to recur. Her PMD thinks she has a UCTD, as all serologic workup has been negative. Any ideas from experts who have been there before. I know this is no substitute for a rheumatologist, but until her appointment, it would help her to hear what others think. Thanks

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/7/2008 9:26 AM (GMT -6)   
Welcome to Nanda, chinacat and Scrnboy. It sounds like you have all been through a lot. Scrnboy, I'm sorry your wife doesn't have a definite diagnosis - these autoimmune and connective tissue diseases are so hard to diagnose and it can take years to get a diagnosis. It took about 3 years and 3 different docs for me to get a diagnosis and I didn't have to wait as long as a lot of people. Tell her not to give up looking for an answer.

I'm glad all of you have found this forum - there are a lot of great people here and you will find a lot of support.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6818
   Posted 6/8/2008 10:30 PM (GMT -6)   
Nanda,
I am sure your panel of doctors are top-notch. Have any of them tested you for one of the diseases in the spondylitis family, like ankylosing spondylitis or undifferentiated spondyloarthropathy? Both of these diseases feature all the symptoms you describe. Pericarditis is a rare complication of spondylitis and is usually seen at the base of the heart - around the aortic valve and origin of the aorta. Is that where your pericarditis was located. I'm just curious if any of your rheumys have looked into this as a possibility... I hope you you get answers and relief soon!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/17/2008 4:45 PM (GMT -6)   
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
 

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2813
   Posted 10/17/2008 5:19 PM (GMT -6)   
Hi Cynthia:

I'm sorry to hear that you have so much going on. I have chronic pericarditis and pleurisy. I take colchicine every day twice a day. I'm also on steroids and all the other meds for lupus. I'm also on a bunch of meds to treat the side effects of my steroid use. Then I also have RA and Fibro so meds for those and finally, I've got blood cancer too.

Normally, high doses of steroids should clear up your pericarditis. You could be having a small pleural effusion. Either way steroids are the best way to treat them. I'm on a fairly low dose of steroids and I have chest pain every single day. I only have relief on high doses. I've been on steroids for 8 years now and I've got a ton of dangerous side effects so my Rheumy only allows high doses of steroids if I'm in serious condition anymore.

I would recommend you see your Internist or Rheumy and you may need an immuno suppressant like MTX, Imuran, Cellcept to help suppress your immune system more. Or they need to give you some steroids for a bit and settle things down for you. If I can be of any additional help please give me a holler.
I hope they get you feeling better real soon.

Best Wishes,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/17/2008 5:53 PM (GMT -6)   
Hey Barbara,
thank you kindly for the quick response! My heart goes out to you for all that you're going through with! Quite frankly, I don't think they'll put me back on steroids as they never completely cleared it up for me and then started developing cushings like symptoms on top of it. He gave me a prescription for the colchicine if I want to "try it" again(this is from my internist who doesn't seem too clued up on all of this) if the other NSAID's don't work.
best to you,
Cynthia

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/17/2008 7:10 PM (GMT -6)   
I too wish to welcome Nanda, Chinacat, and Scrnboy.

this really is a great forum, wonderful people who are always there. Not one of my better thinking days, so unable to say much.



Hope things will get better for you soon.

Hester

Post Edited By Moderator (Lynnwood) : 11/29/2008 10:10:07 AM (GMT-7)


Faithful LL
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/17/2008 8:08 PM (GMT -6)   

 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?

 


 
Faithful LL
 
Recurrent pericarditis, interstitial cystitis, severe migraine headaches
meds include 18 mg Prednisone, 15 mg methotrexate injected, 400 mg placquenil, colchicine, folic acid, diclofenac, Zofran, Ambian CR, Topamax, Paxil, Rozerem, Vit B-12, Vit D, Riboflavin, magnesium, calcium w/Vit-D, ranitidine, fish oil, acidolophilus, mycelex, nystatin,


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/17/2008 8:55 PM (GMT -6)   
Hi Faithful and welcome!
Sorry to hear you're having such a hard time too. As I see you're new here, you might also want to read up on it in the pericarditis forum (it's under cardiology) in regards to the Mayo Clinic and other peoples experiences with them. You might not get an answer right away there as they're a little less frequent on that part but you can find a lot of info from other sufferers of pericarditis  and I'm pretty sure some have gone to the Mayo clinic. From what I recall when I first started researching it last year Mayo and Cleveland were two top rec's.
good luck with your clinic visit!
Cynthia

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/17/2008 8:57 PM (GMT -6)   
Oh and thanks for the hello and welcome from Hester!

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/17/2008 9:06 PM (GMT -6)   
Oh and Faithful,
I just remembered reading something from David Spodick as to how sulfa drugs can potentially be a factor in causing pericarditis.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 663
   Posted 10/17/2008 10:34 PM (GMT -6)   

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


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 10/18/2008 10:45 AM (GMT -6)   
Hi Nancy,
thanks for the thoughts on the palps! Unfortunately(or really fortunately!) I've already been tested for GERD and came out with a clean slate. I just recently began taking a beta blocker again because the palps had returned. After my March hospitalization I stopped almost all of my meds with the approval of my internist. So really I'm only on percocet ,my thyroid meds, estrogen, and now the beta blocker and NSAID (as soon as my stomach calms down). I so appreciate everyone giving me their thoughts though as you never know what might be discovered that I or my doctor couldn't figure on our own.
thanks,
Cynthia
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