Pericarditis/Constrictive Pericarditis

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I am so sorry you have to be going through this. It really is awful! Chronic chest pain is not easy to cope with, and especially when the reason you have pericarditis cannot be determined. I also have recurrent pericarditis, which progressed in frequency so for 3ish years every time I have stopped treatment the chest pain would return. I spent hours and hours searching for "why" this is happening to me, only to not find much...idiopathic pericarditis just doesn't have a reason. I feel fortunate I have a cardiologist who has a focus in pericardial disease who worked with me to customize a plan based on my history of recurrence, moving from being reactive when I have symptoms to proactive to prevent them. I now stay on colchicine since that seems to work well for me to control recurrence, and have a plan for next steps should the current management stop working and I flare again. Good luck finding something that works for you!

Hi I will beging with a little back story.

At age 15 i was told i had a collapsed lung partial 60%. At which time it came back on its own over a couple days 2 months later i thought i had the same issue. However i was then told i had pericarditis. At ehich time i was given a special stereriod to treat it. By age 18 nearly 3 years later pericarditis again was given antibiotics and steriods to treat it. Year later this return same treatement by 22 nothing for nearly 3 years this then cam back same treatemebt however tha pain stayed daily after this between 22 and 27 i have had confirmed pericarditis a number of 6 times.

The pain never goes away just managable. I have been through ecos as well as heart tracing bo damages ekgs non stop as well. I am turning 28 doon i am dizzy thirsty all yhe time but everything keeps coming back normal. Does anyone know what to think or qhat to do ? My blood type is ab and i was reading heart disease is higher i this blood type could it be something simple causing such a bad reoccurence of this awful issue ?

P.s. apologize for any typos typing on old broken phone

Hi @chads33 and @khth,

I moved both your messages about pericarditis to this existing discussion so that you can meet others like @nanakris99 @maryd @seaspray @kalel. If you click VIEW & REPLY in the email notification, you can read through the past messages and post any questions you may have. I’m also tagging @vermontrob @sadie_jane @sbrooks1986 so that they may be able to join in with their insights about pericarditis.

I came across some studies about two new drugs that show encouraging results with regard to recurrent pericarditis; the new medications anakinra, an interleukin 1 Beta recombinant receptor antagonist, and canakinumab, another interleukin receptor blocker. The medication works by changing the way the immune system responds to triggers.
– Long-Term Efficacy of Interleukin-1 Receptor Antagonist (Anakinra) in Corticosteroid-Dependent and Colchicine-Resistant Recurrent Pericarditis https://www.jpeds.com/article/S0022-3476(14)00093-6/fulltext
– A Review of Interleukin-1 in Heart Disease: Where Do We Stand Today? https://link.springer.com/article/10.1007/s40119-018-0104-3

I was wondering if you’ve heard about these treatments?

Thank you Colleen for thinking of me! As it turned out, I was misdiagnosed all along. I had a nodule in the subcarinal lymph node that was pressing on my heart and esophagus. Went for a 2nd opinion, had a biopsy done and was given radiation. I was all better within days and the nodule remains resolved.

I’ve been diagnosed with Pericarditis three weeks ago and am no further along in recovery then day one. Can some one share how long it took to recover and what did they do?? I’ve had several echocardiograms and it still shows the same amount of fluid. Steroids have been used and same results.

Welcome to Connect, @judyk709,

I’m sorry to hear that you aren’t feeling well, but I want to reassure you that, "Recovery from pericarditis may take a few days to weeks or even months,” according to the American Heart Association (AHA) https://www.heart.org/en/health-topics/pericarditis/what-is-pericarditis

This Mayo Clinic patient video has some truly valuable insights about living with pericarditis and various treatment options: https://www.mayoclinic.org/diseases-conditions/pericarditis/multimedia/treating-pericarditis-video/vid-20139209

I’m tagging @helena4000 @jacii @martingraham37 @vermontrob as they’ve written about pericarditis as well. @judyk709, what symptoms or discomfort are you experiencing? May I ask if your doctor has offered an explanation?

@helena4000 I'm so sorry you are feeling so much pain. Have your doctors rules out costochondritis? It's inflammation in the cartilage between your ribs and can feel horrible.

He didn't mention that, but the cardiologist saw the ultrasound and inflammation. I did actually consider that condition in my hunt for what could be wrong but I didn't think my symptoms matched it.

@helena4000 I'm so sorry your in so much pain of it is pericarditis it hurts to breath Ice helps with inflammation Tumeric also for inflammation they use to wrap your chest for helping you n the breathing If your concerned about the Dr get another opinion .Get your test results and go to another cardiologist