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?
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.
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?
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!!)
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.
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