Pericarditis Concern

Posted by sbrooks1986 @sbrooks1986, Dec 20, 2015

Hello! I am a 29 yr old female who had a pericardial window done back in March of this year. Prior to this I suffered from Mono (which kept me literally in bed for 30 days) and pneumonia twice. (once during Mono in both lungs and then in February in my left lung)I was having several panic attacks and shortness of breath with unbearable pain. Drs kept telling me it was all of the "after affects" of having Mono so bad. I finally went to the ER and told the doctor that I am no leaving here until someone figures out what is going on with me. After several scans, blood work and 8 hrs later he says to me it is just a panic attack and was going to write me a prescription. I started to ball, I knew it wasn't just a panic attack. At that point the doctor said to me, would you mind if I did one more test. After that is where we found I had a pericardial effusion. From then on I ended up having the pericardial window done and thought it was all over. I keep having attacks and so my cardiologist put me on Colcrys and Prednisone 60mg (taper does) Any time we get down to 5mg of the prednisone, I have an attack or flare up. Pain is so unbearable in my chest, neck and down my left arm. Leaning forward is some relief, laying down felt as if I was drowning. We don't really know what caused the pericarditis, thinking probably viral. I am pretty healthy for the most part. No autoimmune disease, not diabetic or anything. Just high blood pressure. We tried to taper off the prednisone 4 times now, and each time it came back. He is now referring me to a surgeon to do a total pericadeictomy. My surgeon now wants to make sure first no autoimmune disorder. I seen the Rhuematologist few weeks back and did a ton of blood work and ask bunch of questions. I went back last week to go over results and everything was normal. I even had this test done back when I was first diagnosis with mono and that came back normal as well without being on any meds. I am now having back pain and hip pain and some "flare" in my chest. (I'm still taking prednisone 7.5mg daily with Colcrys) I've also lost alot of hair since being on these meds and I am tired all the time. Any thoughts or input???

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sbrooks1986 | @sbrooks1986 | Dec 20, 2015

I now get weak without warning and dizzy alot!! Sorry, I'm just trying to get some more info and how others deal/are treated. Thank you!!

Colleen Young, Connect Director | @colleenyoung | Dec 20, 2015

Hi @sbrooks1986
Welcome to Mayo Clinic Connect. You must've been at your wits end when you demanded the care team in ER help you get to the bottom of your pain. It's not easy to advocate for yourself when you're in pain and ill. Good for you.

You seem to be well informed about your medical state and the drugs you are taking, but I'd like to include this resource for others who may be reading this thread:
Pericarditis http://www.mayoclinic.org/diseases-conditions/pericarditis/basics/definition/con-20035562

I notice that hair loss or thinning of the hair is listed as rarer side effects of both drugs. Prednisone can also contribute to anxiety.

I also found this study done by researchers at Mayo on Pericardiectomy vs Medical Management in Patients With Relapsing Pericarditis that you might find useful http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3541868/

I'm tagging @gopsillyv2 @mkat5955 @loublarney @karen22298 @probsolved who also discussed pericarditis a little while ago:
https://connect.mayoclinic.org/discussion/hello-my-name-is-yvonne-gopsill-my-husband-and-i-live-in/
https://connect.mayoclinic.org/discussion/chronic-chest-back-pain/

So what is the next step for you now @sbrooks1986? Pericadeictomy or more testing for autoimmune disease first?

sbrooks1986 | @sbrooks1986 | Dec 20, 2015

Hello @colleen_young !!

Thank you so much for all of the information. I really appreciate it!!

I've done a lot of research and what not online and text books about this ugly disease. I go see my cardiologist this coming Wednesday. I'm hoping we will have something set now that we for sure know this wasn't cause or that I don't have any autoimmune disease. My cardiologist has been so good to me and I am grateful. I'm sure this is all frustrating to him as it is to me. He's gone through each step that has been listed as to what treatment is next if the other fails. We are now down to the pericardiectomy. Now, I believe we just find a surgeon here who will do it. My doctor has gone above and beyond by communicating with a surgeon on his cell phone and telling him my story. He showed me the text conversation they had and the surgeon said that I am or would be his #1 candidate for the surgery. Only problem.... He or the hospital he works at doesn't accept my insurance. That was devastating to hear. So, we went to another surgeon and he doesn't want to do the surgery. He said he was not convinced that I had pericarditis. All frustrating really.

I really do appreciate everyone's input and stories. I will let everyone what I find out when I see the cardiologist again!!

Colleen Young, Connect Director | @colleenyoung | Dec 21, 2015

In reply to @sbrooks1986 "Hello @colleen_young !! Thank you so much for all of the information. I really appreciate it!!..." + (show)

That is a hard blow @sbrooks1986 especially after getting so close to what seemed like a solution. Has your cardiologist been in conversations with the second surgeon about why he doesn't think you had pericarditis? What testing or diagnosis does he recommend you pursue?

sbrooks1986 | @sbrooks1986 | Dec 21, 2015

No, not that I am aware of. We are going to try and taper down again. I'm coming off the colchicine this week due to it not agreeing with me anymore then next week, we are tapering down from prednisone from 7.5mg down to 5mg. He is still searching for a doctor and other advice on what else to do. I'm really bummed but I do trust him!!

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