DIAGNOSED WITH PERICARDITIS RECENTLY

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whitewolfva
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Date Joined Sep 2010
Total Posts : 2
   Posted 9/22/2010 12:39 PM (GMT -6)   
Well , just got diagnosed with pericarditis on 9-7-2010 after a trip to the er on 9-5-2010 in which I thought I was having a heart attack.  Went to the cardio doctor on 9-7-10 and thats when I was diagnosed.  I do have a pericardial effusion as well, but I cant remember the size.  I guess it was not enough to get it drained out so I just push on.  I am a 35 year old male and never had any major health issues.  All the tests they ran at the cardio center came back negative for the usuall causes of pericarditis. My sed rate was 88 which the Doctor said it will be high when the inflammation is there.  He put me on 800mg of motrin 4 times a day.  It did go away after about 5 days.  Came back again last week.  Went back to the cardio doctor on 9-20-10 with the same symptoms.  Chest pain radiating to shoulders and neck, cough, very much fatigue, and a little fever with horrible night sweats.  This time he gave me colchicine and told me to stay on the 800 mg of motrin 4 times a day as well.  Although the pain has went away some, its still there when I move and try to be active.  Today is 9-22-10 and I am still very fatigued, coughing a lil and cant walk out to my car without"feeling out of breath"  I work for the Government  and I am a type A personality with OCD.  I am going to be honest.  I am scared to death with this disease.  My doctor told me it was idiopathic which made it worse for me cause I dont know how to fix the problem.  Its like this thing just came into my life and swooped it away.  I was just married to my beautiful wife less than 4 months ago and she has been so supportive. I feel I am letting her down because we cant do the things we used to do and just have fun as newlyweds.  I went back to work no off again. 
Ok hopefully thats enough background.  My questions.   1.  Will this ever go away?  2.  Has anyone had positve results from the colchicine? I have been on it for 3 days and seen no difference. 3. If the colchicine will work, how long does it take?  4.  Is there anything else I can possibly do to help myself or my condition?  5.  Any home remidies to ease the pain?  6.  Should I rest,  try some exercise, should I go back to work?
Any comments would be helpful because I am feeling so alone with this condition.   I am glad I found this site as from reading through some old posts it seems people have connected and stepped out to help people and offer comments and suggestions.  I welcome all because I feel hopeless and like I am cracking up or something.  Kudos to Healing Well. Com for having this forum.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/22/2010 5:03 PM (GMT -6)   
Hello whitewolf,
 
Welcome to HealingWell.  I understand your concerns and also your anxiety re the pericarditis.  I am so happy to read you have a supportive and loving bride.  :-)
 
Under normal circumstances, the two-layered pericardial sac that surrounds your heart contains a small amount of lubricating fluid. In pericarditis, the sac becomes inflamed and the resulting friction from the inflamed sac leads to chest pain.
 

In some cases the amount of fluid contained in the pericardial sac may increase, causing pericardial effusion.  It is a good thing you did not have a large effusion. 

The cause of pericarditis is often hard to determine. In most cases doctors are either unable to determine a cause (idiopathic) or suspect a viral infection. So your in the same category as many other people and the cause of your percarditis is unknown. 

Wondering if you have had an MRI (Magnetic resonance imaging) of your heart?  This technique uses a magnetic field and radio waves to create cross-sectional images of your heart that can reveal thickening or other changes in the pericardium.

If you don't respond to NSAIDs (Motrin)  or colchicine or if you have recurrent symptoms of pericarditis, your doctor may prescribe a steroid medication such as prednisone.

Acute episodes of pericarditis typically last from one to three weeks, but future episodes can occur. about one in five people with pericarditis has a recurrence within months of the original episode. Resource: Mayo Staff

I wish you the best and let us hear how you are doing.  We also have a great anxiety forum if you want to join us there also.

Kindly,

Kitt


~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

whitewolfva
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/22/2010 5:22 PM (GMT -6)   

No MRI was done, only a echo.  Do you think I should request MRI?  I am thankful that I am one of the fortunate people that has ok insurance that makes me a least a little able to afford some tests.  Still rough though.   In your opinion and findings, how long has the colchicine take to start working?

 


Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 11/5/2010 9:24 AM (GMT -6)   
  Hi White wolf
 
  Sorry I lost the current thread we were using & also wasn't keeping an eye on the site.
 Clchicine is a gout medicine for inflamation which I was on for 18 months & NSAID's along with the reatment & it didn't work    My feeling & it is only an opinion of mine is that Colchicine is probably for fairly mild cases , My case was way underplayed with 2 differnt Hospitals telling me I wasn't so bad     I have read all the books& talked to each Author of these books,  since this condition is rare & still very unknown since it is so hard to gauge damage with out seeing it.
 Also be careful what you read ( including me) since everybody's case is different .
 The internet can be good & bad with info & yopu need to weed out the info without panic.
 This is a very fixable condition when handled by the right people. There are many posts from previous forums that are helpful. 
 I will do a better job of looking at the forum or you can email me as my email box on the side is there.
 I am no expert but have lived it & now have my life back, Many prayers & positive thoughts to you,
 
 
              Boog

derekmarkovic
New Member


Date Joined Jan 2011
Total Posts : 4
   Posted 1/10/2011 4:09 PM (GMT -6)   
Boog,

Hi there. I'm curious about your symptoms and whether or not they resolved. I've been experiencing almost constant left-sided chest pain for about 5 months now. I've have a littany of cardiac testing done with no clear answer. My cardiologist says he suspects pericardial inflammation is the culprit, which, he also tells me, without fluid buildup, is nearly impossible to image on ultrasound or a CT scan, both of which I've had. about two months ago, he began treating me with colchicine which seems to help somewhat, but does not completely relieve the pain.
Needless to say, this has been very disruptive to my life. At times the pain can extraordinary, and at other times it is a minor inconvenience, but it almost always there. What was the resolution of your situation? Were you eventually cured? Did all of your symptoms resolve?

Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 1/11/2011 6:25 PM (GMT -6)   
Hi Derek,
  
  I don't know if you read some of my posts from earlier threads but I originally developed Afib in 2005    I had an Ablation that went bad & damged the pericardium, My situation got worse as the Pericardium became more inflamed    I was told conflicting info from many Cardioligsts , bought all the books, even talked to the Dr's that wrote the books, they were all very nice but this is such an obscure condition since it is very tough to detect haw bad things are , even with all the scans & tests they told me I was moderate, when the Surgeon told me after my stripping that the Pericardium was like a think white blanket & was far worse than tests showed,
 I tried all the treatments, Colchicine etc   NSAID's  for over a year. Everyones situtation is different though. I have heard of a few people who had success but they caught it early. I was also told I could exercise with it getting worse & that was wrong too, It was far worse about 1 hour after exercise & would take 24 hours for the pain to go away.
 Don't be hasty, Have faith they will get a grip, just make sure you have the best people working with you, I went to several BIG name Hospitals
 & experts & even they were not fully up on exactly how to deal with things.  There is a little envelope next to my post that allows you to email directly to me, Feel free to write direct, some people have even called to talk, I can email that info if you wish, I had other serious issues with it & I couldn't be better now so Keep the faith !!
 
                 Steve
 

gemini_1290
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/20/2011 4:16 AM (GMT -6)   
Hi,

I was diagonosed with pericarditis in September 2009. I had all the tests done and was told to rest, i have been on strict bed rest for alot of the time since then, which i find very depressing.

In england they dont prescribe steroids for pericarditis, only NSAIDS. I have been taking NSAIDS for over a year now and they have not made a difference.

All my doctors have said that on no account can i exercise.. and that exercise leads to heart damage when you have pericarditis... they have even said i have to take the lift, not stairs.

Since western medicines are not working i am considering going to a chinese doctor... has anyone else done this?

Gem

derekmarkovic
New Member


Date Joined Jan 2011
Total Posts : 4
   Posted 1/20/2011 12:31 PM (GMT -6)   
Gem,

Very sorry to hear about your situation. I'm in a situation not all that different from yours. How are your pains? Do they move around at all? I have them almost constantly. And like Steve's, mine are worse after I do even very moderate physical activity.

Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 1/24/2011 6:45 PM (GMT -6)   
Hi gem, Derek,
 
  From what I have been told the pericardium will not repair itself or get thinner again. I am not a Dr but had seen no less than 6 for this condition. It was only the pericardiectomy that gave me a normal life back. The Pericardium can restrict things & really make the heart work much harder as it gets worse.
 I hope you can find a good Dr or Surgeon as your case may need depending on your Dr'd advice. 
 
 
                      Boog

tiredofpericarditis
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/24/2011 10:41 PM (GMT -6)   
Hello Everyone:

I was diagnosed with pericarditis in October 2010, and the medication that has worked best for me is prednisone. Colchicine did not work to reduce the severe pain. However, prednisone is a steroid that cannot be taken long term, but I can live without pain, and the other symptoms mentioned above have disappeared by its use.

I would like to know about the pericardectomy, and what does the long-term studies reveal about the procedure?

Thanks!

Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 1/26/2011 12:26 AM (GMT -6)   
  Hello Tired of Pericarditis,
 
 
   It is helpful to try to read a lot from the previous threads,
 I had Afib along with Pericarditis so I needed a Maze procedure with the stripping & have been fine since.  Going on 5 years & doing better than ever,   Feel free to email me direct by clicking on the envelope next to my post, Keep the faith as there is help out there,
 
               Boog

Pshah
New Member


Date Joined Jan 2011
Total Posts : 12
   Posted 2/1/2011 2:28 PM (GMT -6)   
Hi Everyone,

I have been suffering from Pericarditis now for over 5 years! Mine is a little different because I have Lupus as well. I get yearly Echo's, EKG and Chest Xrays and the results always show my heart to be fine and no fluid build up in the lining. So my Pericarditis is really caused by my Lupus overreacting and attacking my heart. The first couple of years the pain wasn't so bad with the Pericarditis, I could take 2 Advil's or an Aleeve along with a small dose of Prednisone (5mg) and I would be fine, but for the past 3 years now it has gotten worse and now I suffer from chest pains daily. The hardest thing for me is laying down flat. Anytime I try to sleep the pain and pressure gets really bad that I can't handle it, so for the past 3 years now I sleep sitting up almost every night. When I am sitting up or standing I am fine, I can feel the pain when I take a deep breath, but I am able to go about my daily routine....I am even able to work out with much discomfort. But when I try to lay down or when I walk outside in the cold (I live in Chicago) the pain is really bad and I feel like I can't catch a breath.

I recently just went to go see a new Rheaumatologist at Northwestern since my current Rheumy didn't know what else to do for me to get rid of my Pericarditis. My new rheumy had me go see a Cardiologist at NW and the cardio said I have exhausted all medications already to get rid of my Pericarditis and that surgery is my next option. I have tried, Prednisone (Steroids), Colchicine, High dosages of Ibuprofen (3200 mgs), Methotrexate & Cellcept (Immunosuppressants) and none of these meds have gotten rid of the Pericarditis.

I'm slightly freaking out cause I am only 31 and don't want to have open heart surgery, but it sounds like my docs don't know what else to give me in terms of medications. I'm getting any MRI done on Monday and the results should hopefully give them a better idea of how inflamed the lining is, if there is any scarring around the heart and if surgery is really the next step.

Anyone have an input on this Pericardial Stripping surgery? How risky it is? If it does actually does cure Pericarditis once and for all?

Boog
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 2/3/2011 10:36 PM (GMT -6)   
Hi Pshah,
 Wow that is a tough one but it is my personal experience & many others I know through a few organizations I am associated with the the stripping does in fact cure the condition. I am comin up on 4 years & couldn't be doing better.   Find a good Surgeon & they should be able to get it done for you. I was worried sick & now I am free to worry about things like golf score. Kidding of course.
 Not sure where you are in the country but there is a great surgeon here in the SF Bay Area.   Vince Gaudiani   12,000 + open heart surgeries & with a great record of success. many other good ones throughout the country though. You will be through this soon, being 31    you have a lot of serious living to do,
 
            Boog

YukonJack
New Member


Date Joined Nov 2008
Total Posts : 2
   Posted 5/2/2011 12:41 PM (GMT -6)   
I (male 60 y/old type A) had Pericarditis for about a year starting in 2009. Tried most the drugs listed in this thread but none did the trick until I went to UCLA Med Center where they combined my existing Prednisone therapy with Celebrex. After another four months of a gradual decrease in my Prednisone dose the Pericarditis was gone and I was back to my type A lifestyle. I have lived a normal and active lifestyle for the last year.

I am a great example of getting a second opinion. My primary hometown Cardiologist 'final answer' to my Pericarditis was to crack my chest and remove my heart sack; no thanks. The UCLA Med Center fixed the problem without surgery and for that I am thankful. I'm sure you know of other hospitals that deal with this, like the Cleveland Clinic, Mayo Clinic, both are rated top drawer for heart issues.

Good luck, it's fixable.

elle59
New Member


Date Joined Oct 2011
Total Posts : 7
   Posted 11/18/2011 2:45 PM (GMT -6)   
Hi, I have just started on Prednisone high dose tapered for a week, and feeling no better, if anything pain is worse. I had been on 600mg x 3 of advil for past 2 weeks, and previously only on 375 mg. aleve 2 x's I am curious how long it takes for prednisone to help with the pain? I have had symptoms for 2.5 mths. but just diagnosed 1 mth ago. with small effusion that showed on the echo cardiogram. Some of my Drs. say that the effusion isnt big enough to cause such pain. I get pressure in my sternum and thru to the back and up into my shoulders. When i breath or talk alot or talk fast it makes the pain worse. If anything the pain is now constant and the cold weather is making it worse. Is that normal? I assume i must have chronic since the pain came on gradual and seems to be progressing. Its hard not knowing where this disease will take me..... thanks for listening!

Hayley28
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/22/2011 11:58 PM (GMT -6)   
YukonJack said...
I (male 60 y/old type A) had Pericarditis for about a year starting in 2009. Tried most the drugs listed in this thread but none did the trick until I went to UCLA Med Center where they combined my existing Prednisone therapy with Celebrex. After another four months of a gradual decrease in my Prednisone dose the Pericarditis was gone and I was back to my type A lifestyle. I have lived a normal and active lifestyle for the last year.

I am a great example of getting a second opinion. My primary hometown Cardiologist 'final answer' to my Pericarditis was to crack my chest and remove my heart sack; no thanks. The UCLA Med Center fixed the problem without surgery and for that I am thankful. I'm sure you know of other hospitals that deal with this, like the Cleveland Clinic, Mayo Clinic, both are rated top drawer for heart issues.

Good luck, it's fixable.

Hayley28
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/22/2011 11:59 PM (GMT -6)   
Hi Yukon jack you are right in diagnosis. What was suggested other than surgery that worked? I also have a fever and wake up at night with a head ache thanks and all the best to you.

indycoman
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/19/2012 1:37 PM (GMT -6)   
My son has had recurrent pericarditis constantly since 2000. He is now 29 years old. He has tried every medication under the sun, visited both a rheumy and cardiologist at the Cleveland Clinic as well as at Johns Hopkins and at UPMC in Pittsburgh. Nothing works except prednisone...he has been on an average of about 20-25mg/day for nearly 12 years!!! A drop in dosage of even 1 mg/day below that threshold and it comes roaring back. He has some semblance of a life, but prednisone has taken much of it.

He apparently does not possess one of the extenuating conditions that would make pericardectomy advisable - at least at his age. None of the doctors is recommending surgery.

Any words of wisdom or encouragement is greatly, greatly appreciated.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 2/19/2012 4:13 PM (GMT -6)   
Welcome to HealingWell. I am sorry to read of your son's recurrent pericarditis.  Your son apparently has a very complicated history with his pericarditis and has been to some of the best hospital in your area. 
 
I am guessing that your son has an immunogenic case of recurrent pericarditis.  From the little I know, corticosteroid therapy seems to be the chosen approach to this recurrent pericarditis. 
 
I do not know if Mayo or another facility would have anything new to offer your son but he could certainly check with the cardiology clinic at Mayo to inquire. Here is a link for you:
 
I wish I had more to offer you and as a parent I do understand your concerns. 
 
Keep on talking with us as we are always here to support even if we don't have any magical answers.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

indycoson
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/1/2012 2:12 AM (GMT -6)   
I am Indycoman's son.....was looking around for help and know that had to have been my father that posted. I am sure by the detail that is my case....Going through a flare right now at 25mgs of pred. Sick of it but never give up.....work 12 hours a day at a stressful job and shovel the prednisone daily. It will be the death of me for sure but the bills still need paid. Thinking surgery may be the next option only because I can't take it much longer......they think it was viral and it is idiopathic......just an extreme case I guess. Hang in there everyone. Could be worse for all of us.

- Bill

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/1/2012 3:52 PM (GMT -6)   
Thanks for the update Bill.  Anyway you can cut back on the many hours you work as the stress is so hard on your body ?  Remember your health must come first.  I know that it is easy for me to say but I had to take early retirement for health problems and learn to live with a lot less income and now I am used to it.
 
Take care,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"I am not afraid of storms for I am learning how to sail my ship" ~ Louisa May Alcott

indycoson
New Member


Date Joined Aug 2012
Total Posts : 2
   Posted 8/2/2012 12:19 AM (GMT -6)   
Hi kitt...i really can't right now. I am a supervisor at a fast paced call center....it's really pretty much hell on earth while going through a flare especially. Can't sleep, can't breathe, can't eat.....i've applied for disability to get some relief from work, just to try to get this under control but got turned down. I guess 12 yrs of hell wasn't enough to justify it. Lucky to be alive but don'r feel it much when i'm flaring on 25mgs of prednisone. Really just don't know what to do at this point.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/17/2012 3:21 PM (GMT -6)   
 
I am sorry to read of the difficulties you are having and I do understand how tough steroids can be on people especially in such large doses.  I agree - it does seem like a new medication should soon be on the horizon as steroids have been around forever with their tough side effects.
 
Blessings to you,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"I am not afraid of storms for I am learning how to sail my ship" ~ Louisa May Alcott

Laurel.Smile
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/20/2012 9:06 AM (GMT -6)   
Hi Everyone,
I am so glad that I found this thread, because like most of you, i feel pretty alone is this disease because no one else really seems to "get it." I have had reoccurring idiopathic Pericarditis for over ten years but I wasn't actually diagnosed until 6 months ago. Since being diagnosed I have been set up with a Rheumatologist and a Cardiologist to try and figure out a why, and a how to fix it. Of course, there is no why, like so many of you can understand (they think its viral) but I am running out of meds to try. We have tried every kind of non steroidal anti-inflammatory and those have done nothing.(aspirin, Motrin, plauqenil, colchisine) We have found that usually (last two episodes) 60mg of Prednisone does the trick and then i have to do a long and slow tapper to not have a relapse, but I am concerned right now because the prednisone, the awful but effective drug that it is, usually only takes 24hrs to kick in. I have now been on the 60mg for three days and though i feel a slight improvement in the pain, i am still taking 20 mg of Oxycodone (every 4-6 hrs) to get some sort of pain relief.

I guess my biggest frustration and fear is that none of the doctors are treating it like it is that big of a deal even when i tell them it is debilitating. The other things is, the doctors have only been able to see the pericarditis on a chest xray and heard the rub when the pain is at its most severe, so i hesitate to try any out of state specialists (i live in CO) because nothing usually comes up in the blood work or other tests unless i am right in the middle of an episode.

And I also ran across a center in Cleveland that i am wondering if anyone has tried:
http://my.clevelandclinic.org/heart/departments-centers/pericardial-disease.aspx


I guess I am mostly here to share my story and just know that there are other people out there trying to get through this. Thanks to everyone for sharing your experiences, it has really been a big support.

Laurel

veg1984
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/24/2012 12:51 PM (GMT -6)   
Hi!...Please I hope somebody will answer me because Im on the verge of a breakdown.
Okkk ...So my boyfriend was diagnosed with pericarditis he is asthmatic and is also a carrier of the herpes virus.
He is 29 yrs old He was on valtrex for about 9 yrs before he decided to stop taking the pills. After about 6 months he started to feel ill. We went to the doctors where they said he had strep throat. They gave him meds and he was feeling a bit better. 3 days ago he was rushed to emergency when we arrived there the nurses thought he was having a heart attack dued to all his chest pain but after an echocardiogram, bloodtest and prostate exam ( his stools were very dark they wanted to make sure there was no blood in his stools) they determined he has pericarditis. The doctor says its viral. He's now on Prednisone, tylenol, claritin, Ventolin and flovent ( the last two are his pumps ...since he has asthma) His urine is extremely yellow and he's having pains in his kidneys, he also sometimes feels like he's suffocating and he's coughing up florescent green flem.
I want to know how this started, when it will go away, is it the lack of the no valtrex? Can he have a heart attack dued to this? What else precautions can we take? Is it normal his kidneys are hurting? -( maybe dued to the steriods in predisone) Ive already cut off booze for him and foods that usually give him heartburn. I just feel so helpless.. Im scared I dont want to one day go to work and come home and he's unconscious or worse. :( Im making myself physically ill.
I know I might be acting a bit extreme but I dont know what else to do...The pain in his chest isnt going away I feel like we're running out of options here. We've been to the hospital, clinic , family and private doctor 8 times in 5 days Im exhausted...Im grateful for all the work the doctors put it in but I still need answers.
Someone please answer, and to everyone out there with this illness or disease or whatever it is ( I dont mean to sound ignorant sorry) I hope you feel better and that ur life can go back on course!

Thanks One love.
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