Myocarditis, anyone?: It’s been a long time since I... - LUPUS UK

LUPUS UK

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Myocarditis, anyone?

katidid profile image
5 Replies

It’s been a long time since I posted so many blessings to all of you ❤️❤️

It’s been a rough 6 months and now another diagnosis: Myocarditis. Not the clearing up kind :( and caught years too late 😞

Anyone dealing with heart inflammation? Have any rips you can share about lifestyle and management?

xoxo

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katidid profile image
katidid
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5 Replies
KayHimm profile image
KayHimm

Katidid - so good to hear from you but it sounds like you have really been struggling. Myocarditis is scary, I know. What do you mean « not the clearing up kind? » Is it not responding to steroids?

Wishing you the best.

XK

katidid profile image
katidid in reply to KayHimm

Had to ween off steroids. Adrenals got pretty messed after being on them so long. I also had to stop my other meds b/c of a bad infection. Will be going back on those but the Rheumy and Cardiologist said this Myocarditis is most likely gonna stuck around.

KayHimm profile image
KayHimm in reply to katidid

You have had a very rough time. I hope you can back on your medication soon. If they have been able to ween you off the steroids, that is good. I wish I had more to offer about the myocarditis. From what you are saying it sounds like you do okay with mild inflammation, right?

Thinking of you and hoping for better days.

K

katidid profile image
katidid in reply to KayHimm

Meaning not caused by a virus or other thing that makes it a temporary condition. I guess it can be transient or chronic and I’ve got the chronic kind. Just got my week long cardiomyopathy measurements backs - constant tachycardia ( not POTS). Prob related to the myocarditis but we’re gonna to a stress test (fun fun!!)

KayHimm profile image
KayHimm in reply to katidid

I see. It sounds like a complicated condition. You must feel that rapid heart beat. I hope you can be treated with something so you don’t suffer.

I have a stress test on Thursday but for the arteries. Let me know if there is anything you want me to note to prepare you. I do remember they put the treadmill on a very high incline. :(

K

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