Relapsing Pericarditis

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kdgray
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/14/2013 12:40 PM (GMT -6)   
Hello,
 
I was wondering if anyone else has experienced a similar situation to myself.  I'll start out by saying that I was diagnosed with viral pericarditis at the age of 22 (in 2002).  Spent 3 days in a cardiac ICU for observation then.  My treatment at the time consisted of large amounts of anti-inflammatory medications for 8 weeks solid. After completing that 8 weeks of meds, I was okay for about 4 months, then had a relapse.  I've had several relapses since.  In 2005, while I was pregnant with my 4th child, I saw a cardiologist whom diagnosed me with recurring pericarditis and I was prescribed nitroglycerin  to control it.  The reason it was nitro is because I was pregnant and they could not give me anything else.  The nitro certainly helped with symptoms.  Then in 2007 we moved to a different state and no longer had health insurance, so I wasn't able to go to a doctor to continue treatment.
 
Now here we are, 2013 and I have health insurance again, so I've been to a new GP so that I can get some medication for this condition.  Let me start off by telling you I had a rather horrible relapse in November 2012 for which I went to the ER.  During that ER visit I had all the same symptoms as the initial onset in 2002, they just weren't as intense.  What was most bothersome at the time was a squeezing pressure in my upper chest and throat area, making it difficult to swallow, along with pain shooting down my left arm.  But since my troponin levels were normal, my EKG was fine, and a CT didn't show any fluid around my heart, they sent me home with a script for some pain meds and told me to see my GP the following week.  Mind you, I still had pain shooting into my left arm all the way to my finger tips.
 
So, I made an appointment with my GP as instructed 3 days later.  I explained to her that I've been diagnosed with recurring pericarditis in the past, it is a consistent problem, and I was positive that was what was happening.  I also explained to her that my symptoms happen when I've been exposed to viruses that my children bring home from school.  She sent me to see a cardiologist in a neighboring town about a month later.  During my visit with the cardiologist he completely dismissed that there could be anything wrong with my heart and told me I had GERD.  Mind you, I've not had a problem with managing heartburn in any way.  It didn't seem to matter to the cardio guy that I had been diagnosed with recurring pericarditis.  He just refused to listen to what I was telling him.  He spent more time talking to my husband about my symptoms than me.
 
Since that appointment, I have been subjected to a stress test.  The stress test came back normal.  So now my GP won't even listen to me about the pericarditis.  I've been experiencing symptoms for 3 weeks solid now, been to the GP's office 3 times in these 3 weeks, and all she seems to be focused on is my thyroid.  I really can't figure out why, because my thyroid had tested fine in all 4 blood tests she has done now.  The only abnormal thing about my blood work is a high WBC indicating that my body is fighting an infection.  I have been running an odd fever of about 100.5 all these 3 weeks. 
 
Since I have been dealing with this problem for 11 years now, I have become completely and utterly aware of what is happening to me, and usually treat myself by taking large doses of ibuprophin for a few days.  But the episodes are happening more frequently in the last 2 months, which is why I've been seeking a doctors help.  I seriously cannot for the life of me figure out why I cannot get my GP to listen to what I've told her I've been diagnosed with.  I have signed release forms for them to get my records from my home state, and I don't believe they have done so.  I'm becoming increasingly frustrated with the situation.  I was just at my GP on Thursday for the same symptoms (because they have not diminished or stopped) and she keeps doing blood work for a thyroid problem.
 
Has anyone else experienced such a lack of respect from their GP?  And does anyone have some advise on how to get her to listen to me.  I'm starting to think that, short of dying, nothing is going to get her to hear what I'm saying to her.  Any advise would be helpful.
 
Thanks

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 4/14/2013 1:39 PM (GMT -6)   
Hi and Welcome to HW,
I would find a new Cardio doctor whom will listen to you and
also has a better attitude to help you. You should not deal with doctors whom don't listen and help you.
I was diagnosed with Crohns Disease 1992 . I also was diagnosed with Rheumatoid Arthritis.

Meds: Enbrel: Once a week injection, Vitamin B-12 injection monthly, Vitamin D :Once a week.



FORUM MODERATOR: RHEUMATOID ARTHRITIS

kdgray
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/14/2013 3:21 PM (GMT -6)   
Thx for the advice. I was supposed to have a new cardio guy meet with me, but was just notified that he is retiring and not accepting new patients anymore.  And since my GP isn't listening to me, I can't seem to convince her to write me a referral for some one else. It's been very frustrating. It's one of those things where I think if they have never had to deal with my type of condition, they just are inexperience (AKA uneducated) in this area.  I'll see what I can do on my end and let y'all know what happens.
 
Thanks again!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 4/15/2013 4:26 AM (GMT -6)   
I have in the past fired a doctor for bad bedside manners he was
always late for my appt made me wait 1 to 2 hours in the office
to see him.
I was diagnosed with Crohns Disease 1992 . I also was diagnosed with Rheumatoid Arthritis.

Meds: Enbrel: Once a week injection, Vitamin B-12 injection monthly, Vitamin D :Once a week.



FORUM MODERATOR: RHEUMATOID ARTHRITIS

vpp
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/15/2013 6:16 PM (GMT -6)   
Hi KDGRAY,
 
Sorry to hear you are going through this pericarditis roller coaster that many of us have.  It is awful, huh?!!
 
I have had pericarditis for the last 8 years and am being seen at the Mayo Clinic in Rochester, MN for the last 9 months.  I'm very frustrated, to say the least, as the Mayo Cardio Dr. has now referred me to the RA Dr., who wants me to start taking Kineret injections.  There are only 8 people that have taken these injections, that have pericarditis that they have worked for......yes, only 8.  So why would I want to try another drug, when for the last year, I have been on 800 mg of Ibuprofen, Colchicine, Predsione (as high as 60 mg) and now tapering down, but still in pain??!!!
 
I had one person, who has had pericariditis, tell me that these Doctors are not getting to the bottom of the problem...which is an infection...they know that, but they are just putting a "bandaid" on it, by filling us up with drugs, rather than finding out what is causing our infection, to cause pericarditis.
 
I'm to the point now that I have an appointmet at the Mayo in a week with the surgeon to see if i should have a pericardictomy....removing the pericardium.  This is suppose to be a last resort, but I can't stand the recurring and pain.  I cannot find anyone that has had this surgery to talk to, to see if I am taking too big of a risk.
 
Only help I can say to you, is to find a Doctor that will listen.  My local Doctors had no clue either, and did every test imaginable, to tell me I had pnemonia and gave me anti-biotics.  Once I told my local Dr. that I wanted a second opinion, she gave me the referral for the Mayo  The Mayo Dr. has been helpful, but at this point, I think he is as frustrtated as I am with my "chronic pericarditis".
 
Good luck to you!

kdgray
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/19/2013 1:37 PM (GMT -6)   
Wow, I never realized what a problem this condition is for doctors (more so the patients).  I found an article about research that has been done for this condition:
 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768518/
 
Also on this site they have some research about recurring pericarditis being a possible autoimmune disorder.  There are tons of articles about the research they have done.
It was very explanatory.  So much so that I want to print it out and take it to by GP.  My GP had me do a Holter monitor for 48hrs.  Just took it back today.  But she said that if they don't find anything on it, she is going to test me for Cushing Syndrome/Disease.  I've looked that up and None of my symptoms match that disease at all. She said if it's not Cushing's, then she is going to send me to an endocrinologist.  I don't understand why she would want to send me to a hormone doc if they only thing wrong with my blood work is WBC related.  It truly is a very frustrating condition all the way around.  My biggest concern at this point is that my symptoms have lasted for 4 weeks now.  This is by far the longest episode I've ever experience in all 11 yrs of dealing with this.  I've been running a low fever on and off this whole time.  My blood work still says I've got an infection of some sort, but my GP hasn't even mentioned this to me.  I had to get my results and look for myself.
So yeah, I guess I'm on the wagon with every one else that is a cardiac anomaly.  Too bad it's not a fun ride :-) .
 
vpp-
So very sorry you are having such difficulty. It sounds like you have some tough choices ahead. Perhaps Mayo can offer you a way to contact a patient support group for individuals that have had the surgery you mentioned.  No better way to find out the outcome of the surgery than to talk with some one that has had it done. I'm surprised they would even consider the surgical option. Most of what I read in research articles says that a surgery is the absolute last option and usually only done if the pericardium is constricting the heart in some way. 
Thank you so much for your post.  It's very appreciated! Take care!

kdgray
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 5/13/2013 8:41 AM (GMT -6)   
Well after all the bull, I'm still no better off than I was.  The Holter monitor said there was nothing notable wrong with my heart at all.  Which isn't a surprise because normally with viral pericarditis you don't see anything wrong with EKG readings.  Sad part is, my left arm hasn't stopped hurting since my first post. My doc is unwilling to write a new referral for cardio because of the Holter results. confused    Basically they are treating me as if it's all in my head now and have prescribed me some anti-anxiety meds.  I completely understand that anxiety can cause chest pain, but chronic left arm pain?  It's just a constant ache now. So very frustrated. I've had CT scans done of my neck and there is nothing being pinched.  Just feels like my left are in being squeezed painfully (like an over pressurized blood pressure cuff).  It's a good thing I'm right handed or I'd be in some real trouble.
 
I finally got my records from my old clinic and my doc still hasn't taken the time to review my stuff.  I'm about ready to say "forget it" and just self treat with advil.  The problem is, patents shouldn't have to self treat. Docs should be willing to find a cause. That's what they are being paid to do. I say, if they don't do their jobs, why should they get paid? If I don't show up to work, I don't get paid.  The whole situation is just very frustrating!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/19/2013 12:04 PM (GMT -6)   
 

Hello and welcome to HealingWell.  Glad you've found our online community. It’s a great place to connect with others traveling the same road...you'll find much support, encouragement and advice from others who understand. I am Kitt and I am the Moderator of this forum.

Gastrointestinal disorders that may be the cause of chest pain — The possibility of radiating or referred visceral pain due to peptic ulcer disease, cholecystitis or biliary colic, pancreatitis, kidney stones or even appendicitis may be considered in any patient with unexplained chest pain.

Chest pain due to gastroesophageal reflux disease (GERD) can mimic angina pectoris and may be described as squeezing or burning, located substernally and radiating to the back, neck, jaw or arms, lasting anywhere from minutes to hours, and resolving either spontaneously or with antacids. It may occur after meals, awaken patients from sleep, and be exacerbated by emotional stress.

After cardiac disease has been ruled out, a trial of acid suppression may assist in the diagnosis of GERD.  You may want to talk with your Dr. re GERD.  Also we have a GERD forum youmay want to post in to learn more about this disorder.

Again a warm welcome to you !

 

 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

sara62
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/31/2013 9:56 PM (GMT -6)   
Hi KDgray and others on here,
It's so good to not feel so alone with this chronic (acute) pericarditis (and pleurisy in my case). I thought my case might help you in some ways. It's June 1st and I've been suffering from intense recurring (at the end of Feb. it recurred and never stopped) pericarditis since this past January. Looking back I see I had a very mild episode in 2009.

I've been to 2 cardiologists, had endoscopies, been in the ER several times, been to 2 rheumatologists, pulmonologists, infectious disease specialists, on and on, had every test and everything has come out "normal". BUT I finally found a rheumatologist - very well-known, smart, kind. He says he sees this all the time and it is an auto-immune response to some kind of infection (viral/bacterial). You don't know how good it felt to be finally acknowledged, to have someone say "this is pericardiitis and it is auto-immune related."

Other docs told me it was Adult Onset Still's Disease after I was ruled out for Lupus. But this new doc says it's none of that and is just my immune system gone haywire. We just have to reset it.

Now being auto-immune is no fun ride. You have to take immune suppressants (and get off steroids), but there is a lot of evidence that they really are working for people much more than high doses of Ibuprofen, steroids and colchiine (all of which i've been on for months and still have low-grade fevers, chest pain, difficulty breathing).

I live in New York City where there are a lot of good doctors but it still took me 6 months to find this one. Please try looking into auto-immune causes. Going to cardiologists didn't seem to do anything for me.

Good luck and I'm so sorry you have to suffer so much. May we all find a way out of this!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/4/2013 1:41 PM (GMT -6)   
sara62,
 
Welcome to HealingWell. You've found a safe, secure, and reliable support community for people battling a range of health issues. We have many  fellow members here who will appreciate your sharing your experience with pericarditis so I thank you a thousand times over for taking the time to share with us.
 
I hope you will continue to read and post here in the forum.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"The wind blows, the sun rises, the snow falls and the ocean relentlessly pounds the shore. Life rolls on with fresh new possibilities at every turn."

Mel775
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 5/26/2014 7:31 PM (GMT -6)   
I was diagnosed with pericarditis back in September , mine became tamponode , I spent a week in the icu, every test under the sun and they have no reason for it. I'm having my second relapse sence the diagnosis. My question is, I've recently began a diet/ exercise routine, trying to loose a few pounds, 4 days in and I'm relapsing, does exercise play a factor? Also if I run/ walk to much my hands swell up, can this be related to paricarditis? Sence my symptoms returned a couple days ago I feel bloated and have gained a 2 pounds. Any advice or info would be help ful!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/31/2014 10:14 AM (GMT -6)   
Mel,
 
Find yourself a new Dr. and don't stop advocating for yourself.
 
One of the best pieces of info I have read in this thread is the one right before yours referring to autoimmune disease.
 
"Most patients with viral pericarditis recover within one month and have no further complications. Symptoms also usually subside in one month or less in other forms of pericarditis, such as pericarditis caused by heart attack or chest trauma. In other forms of pericarditis, especially pericarditis caused by autoimmune diseases such as lupus, the condition may become chronic.
 
 
"Certain autoimmune diseases, such as lupus, rheumatoid arthritis and scleroderma, also can cause pericarditis. Additional causes of pericarditis include injury to the chest such as after a car accident (traumatic pericarditis), other health problems such as kidney failure (uremic pericarditis), tumors, genetic diseases such as Familial Mediterranean Fever (FMF), or rarely, medications that suppress the immune system."
 
 
I think you will find these to references helpful so do seek out further evaluation.
 
Yes, lots of us have anxiety but when it comes to worrying about our vital organs we naturally become alarmed.
 
Keep on talking with us as support is a huge part of healing.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.


"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

cspin
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/3/2014 9:14 PM (GMT -6)   
I also have relapsing pericarditis and I am at my wits end. I had some issues in January that brought me to my PCP, and I was diagnosed after several weeks, with IBD, specifically UC. I ended up in the hospital twice, first because I could not eat or drink while on flagyl (sp?) which they gave me in case I had some sort of parasite. The second time I had been taking mesalamine which has a "rare but serious" side effect of pericarditis. I was then admitted a third time when my pericarditis came back while tapering off steroids and was accompanied by a fever. Tomorrow I drop down to 12mg of prednisone from 13. Last time I reduced from 12.5 to 11 and ended up at urgent care where they put me back on 40mg and a slower taper. I am also on colchicine and sometimes Celebrex, but my insurance won't approve that and I cannot afford it without it. I am now seeing a naturopathic physician who has given me a number of supplements that should help reduce the inflammation, but even dropping from 14 to 13 I can feel the discomfort coming back. I just can't seem to get off the prednisone without all of my symptoms returning. I feel better knowing there are more of you out there, but I would love to hear from someone who has successfully tapered off the steroids. I hope we can all move on from this!

TMWQ
New Member


Date Joined Feb 2011
Total Posts : 4
   Posted 12/17/2016 11:55 AM (GMT -6)   
Is this thread still active? I have recurrent pericarditis--triggered by viruses--and am dealing with another episode. One of the worst I've had. Just checking in with the community for some support...thx.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16150
   Posted 12/17/2016 12:15 PM (GMT -6)   
Unfortunately this is a thread over 2 years old. This forum no longer has a mod to help keep things going. A little trick here is if you happen across a post that peaks your interest, click on the members name & it will show you when they last posted at HW. There are a lot of old threads here about pericarditis if you are wanting to read the stories.

So sorry to read that you are having another round of pericarditis. Hopefully the dr can get this resolved as soon as possible.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

TMWQ
New Member


Date Joined Feb 2011
Total Posts : 4
   Posted 1/3/2017 2:16 AM (GMT -6)   
Thanks Susan.
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