28 yo woman suffering from Chronic Pericarditis for the last year, needs a 2nd opinion

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fashiongirl16
New Member


Date Joined Jun 2012
Total Posts : 1
   Posted 6/5/2012 6:53 PM (GMT -6)   
Hi there I am a 28 yo woman who was diagnosed with Pericarditis last April, after going to the emergency room complaining of left chest pains. I was initially referred to a cardiologist in NJ who was did not have the best bedside manner and I did not feel comfortable with her. The pain I was feeling went away for a month or so. It then came back soon after. I found another cardiologist in NYC at NYU hospital who I am currently seeing. He first prescribed me with Colchicine 2x a day along with 400mg of Ibuprofin. I took this for about 2 months with reoccuring chest pain. Then 1 month and a half ago the doctor put me on 400mg of Ibuprofin 3x a day and wanted to see if this would help. So far there hasnt been a successful outcome. I am at a point now where I still get chest pains throughout the day and I am growing nervous. Last week I woke up feeling pressure in my chest which was different then what I was use to. Wasn't able to reach my doctor so ended up going to the emergency room where they did an EKG, where they not see inflammation. I am still having sharp chest pains.


My current doctor did not initially schedule tests to figure out what caused the Pericarditis, when I began seeing him in October. He did not do a blood test, just an EKG and echocardigram. He now says he would like to test to find out the cause. It has been so hard to get in contact with him and I am not satisfied with his work thus far. I am frustrated because I have had this condition for over a year now. I want to get a second opinion with another NYC doctor. Has anyone had a successful experience with pericarditis that can recomemend someone to me? If not I am open to ALL feedback. I'm at a point where I am tired of being in pain constantly. I did not do my homework early on and now am making sure to be as knowledgable as I can. I am going to start calling new drs tomorrow.

I am especially nervous because I am starting a new job in 2 weeks where I have to train in San Francisco (for about 2 weeks). I want to at least know what kind of pericarditis that I have and how I got it, if thats possible. And what treatment I SHOULD be taking. I want to be able to focus on my new job but I feel like I cant with the pain and uncertainty of my diagnosis. I appreciate your help/feedback!!
Thanks everyone!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/6/2012 9:29 AM (GMT -6)   
Hello and welcome to HealingWell.  I understand your concerns and you certainly have a right to feel the way you do.  Anytime we have a dx of something going on with our heart it causes us to feel anxious and stressed.  On top of that you have a new job committment.
 
I am sorry you have not been able to connect with a Dr. that you are comfortable with. Please do seek out another Dr. and advocate for yourself as a year sounds like you may have what is referred to as chronic pericarditis.  Please remember I am not a Dr.
 
You may find this link helpful-
 
 
Do remember that there are many different causes of pericarditis so when reading  this info don't get stuck on the worse case scenario.
 
I look forward to reading an update from you and please know I will be right here to support you.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"Life is not about waiting for the storms to pass...
It's about learning how to dance in the rain."~ Vivian Greene

ACinNYC
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/2/2013 9:12 PM (GMT -6)   
Hi fashiongirl! I just came across your posting and can sympathize with what you are going through. I am also a 28 year old female in the NYC area being treated for pericarditis. Mine has lasted just about a year and my current treatment regimen includes daily colchicine and regular doses of tylenol, which I resorted to after prolonged use of indocin resulted in nasty GI side effects. Were you able to secure a second opinion in the NYC area? I'm very curious to know more about doctors in the city who may be familiar with cases like ours.

To others with the disease who may come across my posting: Are there any other anti-inflammatory rx's you can recommend that would serve as an alternative to indocin? I've gone the Prednisone route previously, but had no real improvement in pain management.

ACinNYC

gebwoman
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/17/2013 11:29 AM (GMT -6)   
Hi ACinNYC,
I was prescribed Nebumetone 750mg. I have taken prednisone also, but prefer not to stay on it. If I don't take it twice daily, all heck breaks loose. I have been diagnosed since Oct.30, 2012. I can't believe I am going through this. I live in constant pain
I just had a shortness of breath episode. Now on the right side of my chest. I haven't been back to work. I don't see how it is possible. I was so active before. I have to pick one or two things to each day, then I'm done. Can't lift, reach, twist without pain. The worst part is not knowing when it will end. I would love to join a support group. I feel so helpless.
I don't know what to do except hope and pray!

sheryl wheeler
New Member


Date Joined Jun 2013
Total Posts : 11
   Posted 6/24/2013 8:56 AM (GMT -6)   
I am 60 year old woman previously very healthy ,I thought. 7 weeks ago 2 trips to the ER then diagnosed with pericarditis when it showed up on the EKG. Mri and chest exray. High dose of ibuprofen and toridol stopped the pain. I have been on high doses of ibuprofen 600mg every 6 hours as per the emergency room doc. Had pain at 4 hours so I increased it to every 4 hours. So far no intestinal upset. I have tried to reduce and the pain comes back. Went totally off the ibuprofen for a few days and had a terrible attack with the rub. Went back on to every 4 hours and it stopped. I have gone to 2 docs to get there opinion and I think I am better at self treating. I don't want prednisone as it can cause it to recur. Colchisine can affect your white bloods cell production and could kill you but it has been used for a long time for gout. Ibuprofen is my drug of choice with few side effects if your stomach can take it. I will just stay on the ibuprofen for 3 months and then try again to come off it. Yes, I have all the pains everyone describes but it is under control with the ibuprofen. I just can't miss a dose. I have bottles of the stuff stategically placed so I have it available when I need it. I write down my time so i don't double dose. Docs dont seem to help much with this condition. I have no insurance and i ran up to ER visits and doc bills. If it is not gone at 3 months I am going to try the colchisine. I am on a lot of supplements and I just added Iron. Could be related to an iron deficiency, also autoimmune disorder. I had the flu a week before I got this so i think it is viral. All ages of people can get pericarditis, I eat a very healthy diet and have lots of supplements but I was iron deficient. I am very sleepy even though I sleep 9 hours. When I have time I take a 4 hour nap. I didnt work for the first month and slept 18 hours, waking only to eat a little and take the ibuprofen. I am back at work but I cant walk up steps or move around too fast. My heart will beat really hard and then I feel light headed. So I just move a little slower and try to eat extremely well. I don't have much appetite I really only want ice cream. No pain with the ibuprofen, it is a miracle drug and very cheap. I will only go back to my doc if I decide to take the colchicine. Good luck everyone

PericarditisFu
New Member


Date Joined Jul 2015
Total Posts : 1
   Posted 7/1/2015 12:47 AM (GMT -6)   
Hey 28 female here too. I've had it for yrs.. my advice get voltarin gel or solarez.. they're anti inflammatory gels that when u rub on your chest helps to alleviate the pain. Also drink water and avoid foods that cause heartburn and indigestion etc. Lastly anxiety meds might also be needed to help keep calm during a sitituaiton that's not calming and hard to remain calm. It just exhasturabtes your condition getting upset. But let's face it after weeks of it we lose our kool and it's hard. Also nyc weather/humid/city air in general is no good. Buy an air purifer. Hope that helps. Rumours of acupuncture helping too but I can't say personally.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20164
   Posted 7/1/2015 3:08 AM (GMT -6)   
welcome pericardititisfu. welcome. thx for sharing.
THE HAPPY TURTLE.

NOT DEAD YET!!!!! STILL KICKING AND SCREAMING!!!
'

Bobbi_007
Regular Member


Date Joined Dec 2015
Total Posts : 41
   Posted 12/13/2015 3:05 AM (GMT -6)   
Have any of you been diagnosed with this in the absence of findings on echo, chest CT? No infection or inflammatory markers in blood. No rub, no fever. Left sided sharp chest pain that got worse when I lied down. It eased up a bit...but now it's back. Been going on since September. Plus, a similar issue last November ...had ecg and chest X-ray and was dx with viral pneumonia in the absence of pneumonia on the xray.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16161
   Posted 12/13/2015 12:42 PM (GMT -6)   
Hi Bobbi, wanted to pass a tip onto you that will help you navigate the forum easier. If you will click on the members name that you want to ask a question of it will bring up several of their posts so that you can see when they last posted in this forum. For instance PericaditisFu has not been back to this forum since the above date. We have lots of people that just pass through these forums & we never hear from them again. This should help you navigate easier. Take care.
Susie
Moderator Chronic Pain & Psoriasis Forums

Bobbi_007
Regular Member


Date Joined Dec 2015
Total Posts : 41
   Posted 12/13/2015 1:32 PM (GMT -6)   
Thank you for that. Still figuring everything out! :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16161
   Posted 12/13/2015 2:05 PM (GMT -6)   
No problem at all, lol. So many of the threads in this forum are older ones & others have come along & posted on them making it a little taxing trying to figure out if the member is still hanging around or not.
Susie
Moderator Chronic Pain & Psoriasis Forums
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