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mnjodette
01-26-2007, 05:28 PM
My husband asked me a question and I really didn't have any answer. Other than reductions in prednisone, are there other triggers that would bring on a bout of pericarditis? Stress; exertion? I've never asked my rheumatologist about that. We've just focused on the reduction in steroids as the primary factor.

Saysusie
01-28-2007, 09:51 PM
One of the primary triggers for pericarditis is viral infection! It can be caused by an infection by several types of viruses, including coxsackieviruses, echoviruses, adenoviruses, the human immunodeficiency virus (HIV) and the viruses that cause mumps or hepatitis.
Pericarditis can also be caused by an accumulation of urea and other waste products in the blood caused by kidney failure (known as Urema). As you know, Rheumatic diseases (rheumatoid arthritis, scleroderma and polyarteritis nodosa) and collagen vascular diseases, especially systemic lupus erythematosus (SLE or lupus), also can cause pericarditis. If your lupus is active, it can cause a pericardits flare as well.
Like Lupus, flare-ups of pericarditis vary from person to person and, beyond what is stated above, are pretty unpredictable :(

Peace and Blessings
Saysusie

MARYCAIN
01-29-2007, 08:35 AM
When I was having the recurring bouts of pericarditis my rheumie told me that having sjogrens along with lupus was a big factor in the pericarditis. I'm not sure if this was based on clinical studies or just his own experience, but the materials I got from the Sjogrens Foundation when I was diagnosed do mention pericarditis as a common complication of sjogrens. So possibly the pericarditis is coming more from the Sjogrens. Have you had an echo done recently to see if there are any changes to the heart wall?

mnjodette
01-29-2007, 06:39 PM
Thanks for the info, Saysusie and Marycain. It's interesting - the rheumatologist at the U of M said that neuropathy is also much more common in people who have both SLE and Sjogren's. I think my lupus is active again (actually has never really gone fully into remission yet.) I'm just not well at all these past couple of weeks. I took a trip to visit friends about 5 hours away over a weekend. I think it was just too much.

I have had several echos, but they are always looking for fluid (in the ER.) I think I really need a cardiologist to look, but that hasn't happened yet.

What worries me is that they bumped up my prednisone (about 100 mg in a 24 hours period.) I'm reducing it every 3 days. But, even after the bump I still have chest pain adn shortness of breath. I am just NOT going to back into the ER, though. It's pointless. But every time I call my rheumatologist, she just tells me that if it's bad I need to go into the ER. Where do I go with that?

Sorry - rattling on again. :oops:

Jody

MARYCAIN
01-29-2007, 07:06 PM
It sounds like it's time to have an appointment with a specialty cardiologist familiar with autoimmune diseases who will do a thorough exam. It might also be time to talk to your docs about colcichine. You've been on the other meds for a while now and they don't seem to be helping much, so there doesn't seem to be any benefit in not trying a new med. But with the lupus and sjogrens, recurring pericarditis is more than a "pain", it puts you at real risk for developing constrictive pericarditis from scar tissue. So if your docs don't seem to be taking it seriously, it may be time to assert yourself and get something done.

mnjodette
01-29-2007, 07:27 PM
I know you're right, Marycain. This is driving my husband nuts. He really wants answers (as do I.) He's encouraging me to find a new rheumatologist, but I hate the thought of starting over with a new doctor. Part of the problem is that my rheumatologist works part time (she has 3 little kids.) There are other good docs in the same clinic, however, so I may need to think about that. Thanks for the insight....now I just need to get assertive.

kimb
01-29-2007, 09:14 PM
Jody- :D
My 8 time recurrent pericarditis almost always is when my prednisone gets below 10mg. I have read articles about pericarditis becoming dependant on steroids. Another important thing, at the time of my diagnosis, my chest pain and shortness of breath also came from pulmonary emboli(blood clots in lungs). You could ask for a ct scan to rule that out.
I havent found that over-exercising or stress cause my pericarditis, as I have had it 8 times! It is always when the pred gets to 10mg! And my other lupus symptoms dont really appear with it. I do get a low grade fever of about 100. Makes me wonder if there is an underlying infection. My rheum. says thats not in my case. (my white blood cells jump pretty high also)
Our ER here is lousy. In June they sent me home after the technician told the ER doc that my echo showed nothing. My primary called me 4 days later(after suffering) :cry: saying the echo showed pericarditis with effusion. Idiots! My xrays and ekgs usually dont show pericarditis...??
I have a call into the admin. of the hospital..... :evil:
How many times have you had your p.card(pericarditis)? do you notice if you are low on your pred?
Hang in there lady!!! Think of that cute little angel you have to cheer you up! She will make your day!!! :)
This is a great topic!!!
Kim

mnjodette
01-30-2007, 04:07 PM
I've been in the ER 5 times; admitted as an in-patient twice and have had at least 2 other occurrences where I called my rheumy but didn't go into the ER. Yeah, it's getting old. My prednisone (or lack of it) has certainly been the main factor. Kim, it has generally been when my pred has gone below 10mg. I worry about the pred :mad: nisone dependence and the 'back-lash' pericarditis that's possible with that. I just want some better answers, and I'm really going to nail my rheumatologist about this in my next visit. I may have to take hubby with, as he's much better at that kind of confrontation than I am. I was in the ER nearly a week ago now and I still don't feel right. It's hard to do nearly anything - walk a block, climb a flight of stairs - without my chest hurting a lot and being short of breath. This can't be right. :mad:

MARYCAIN
01-30-2007, 04:15 PM
Jody, has your doctor ever recommended pulsed (IV) steroids? Sometimes it's a way to get pericarditis under control when oral pred isn't working. A depot steriod injection (long-acting) might also be an option to help you get your oral doses down. But with your chest pain and shortness of breath, if you haven't been worked up for a possible clotting disorder, you should be. Do you know if you've ever had a d-dimer test done?

mnjodette
01-30-2007, 04:26 PM
That test doesn't sound familiar. I'm making lots of notes for my next visit (had a lot of good suggestions from all of you!) and I will ask about that. I will also ask about the pulsed steroids. I'm just convinced there's a solution here - I just haven't found it yet.

MARYCAIN
01-30-2007, 05:05 PM
D-dimer is a blood test that looks for fibrin degradation products (FDPs) in your blood. FDPs are the fragments left behind in your blood when you have had a blood clot that is in the process of breaking down. D-dimer is a particular type of FDP - normally, it is undetectable in the blood, since it is only produced after a clot has formed and is in the process of being broken down. So a positive d-dimer means that you have had a clot somewhere, and that pieces of the clot may be clogging up your circulatory system. When people think of blood clots, they often think of deep vein thrombosis, which usually affects deep leg veins, or the clots that cause strokes, and don't realize that even a small bit of clot can cause problems, especially in the lungs - it can cause chest pain, shortness of breath and coughing. Many people with lupus are "hypercoagulable", meaning their blood clots more easily than normal. So when a lupus patient has chest pain or shortness of breath, a clotting problem always needs to be ruled out. The d-dimer is quick, fairly inexpensive and only requires a blood sample, so it's a good screening test for possible clotting problems.

mnjodette
01-30-2007, 07:05 PM
Thanks, Marycain. Another thing to add to my list of questions. I may give my list of questions to you for proof-reading!

MARYCAIN
01-30-2007, 07:28 PM
Glad to help. That's one reason I'm so glad my rheumie uses e-mail - I can send him my questions before the appointment so he has plenty of time to look up the ones he doesn't know either :)

mnjodette
01-31-2007, 07:00 AM
Hey, that's a great idea. My rheumy did give me her email address. I might try that just to see what happens.

Jody

kimb
01-31-2007, 11:05 AM
Good Morning! Jody- :D
Did your dr increase your prednisone at all? I would check on the Colchicine and I have also read a bit about Indomethacin....? I havent looked it up, dont know that much about it. I have read it is a NSAID, and has helped with pericarditis. I was reading last night about pluersey, have you thought of that?
I hope I dont have another episode of my pericarditis, If I do, I am going to request a ct scan. That way they will get a picture of my heart and lungs.
I am also going to nail my dr. when I go on the 20th. I have a list going, and I want some answers!!!!
I have had 2 D-Dimer tests done. They just took me off my blood thinners in November. Both my tests were neg. But I will have another done in a few weeks.
Have a happy day!
kim

MARYCAIN
01-31-2007, 11:25 AM
Indomethacin (Indocin) has a number of potential side effects and drug interactions and a very high potential for liver and renal toxicity. Anyone with a history of asthma, heart disease, kidney or liver disease, seizures, depression, GI problems, acid reflux or GERD, or parkinson's disease should steer very clear of this particular medication. It has a number of potential drug interactions, including methotrexate, ACE inhibitors, ACE-II meds like Cozaar or Diovan, beta-blockers, diuretics, blood thinners, aspirin, steroids, and other NSAIDs. So be sure your doctor is aware of all the meds you take and your complete medical history if this med is ever prescribed.

mnjodette
02-01-2007, 06:12 PM
Our younger son (the nurse) mentioned indocin as an alternative, but wasn't sure about the side affects. Sounds like it might not be a good choice. I'm so confused about my symptoms and what to do next. I still don't feel well at all. I see my rheumy on the 13th. I'm supposed to have a lip biopsy done next week at the U of M (for the Sjogren's thing.) Just hate the thought of the 3 hour drive, even though hubby is going with me. I want to be WELL. (Yeah, don't we all.....) :?

Jody

MARYCAIN
02-01-2007, 06:30 PM
Well, it's a very potent anti-inflammatory, but as with most medications, the stronger the drug, the more potential side effects. But with the amount of prednisone you have been on, I doubt indocin would make much of a difference, since the problem doesn't seem to be completely imflammation-related. If you don't get answers from the rheumie, it might be a good idea to push for a cardiology appoinment, with a cardiologist experienced in auto-immune diseases. Much as I hate to suggest uncomfortable tests, withdrawing some of the pericardial fluid for testing is the best way to rule out any underlying infection. If you can't find a cardiologist in your area with experience in treating recurring pericarditis, ask about pulmonary specialists or intensivists who might have comparable experience.

mnjodette
02-01-2007, 07:28 PM
I'll be doing some significant 'pushing' at my next appointment with my rheumatologist. I guess I have to start there, and ask her to help me get what I need. I don't know where else to go. My GP hasn't been involved since very early on.