Hi Okapi2. I don have this but it is not rare with Polymyositis. They are learning more all the time about Myositis and autoantibodies. The auto antibodies tell disease pathway and the best way forward for your doctor to mange your illness. Do you know what your autoantibodies are. Best wishes. Autumm

My understanding is that cardiomyopathy is inflammation of the heart muscle, so it goes along with myositis. I had this shortly before my diagnosis in 2008. Along with that I have a heart arrhythmia. The arrhythmia used to be quite bothersome, but it's much "quieter" now, although it still shows up on EKGs. The arrhythmia became less noticeable after I started taking CoQ10, vitamin d3, and magnesium. Have you seen a cardiologist yet? They will do tests to see if, or how much, damage has been done. Best wishes to you okapi2.

Thank you for the replies.

Yes, I do see a cardiologist. I see an EP cardiologist regularly after I was hospitalized earlier this year for heart failure. I've had EKGs, ECGs, and a cardiac MRI. I no longer have heart failure, but I do have atrial fibrillation for which I am currently being medicated, and I have scar tissue on my heart (which will never go away). My ejection fraction (the percentage of blood my heart pumps out) is a little diminished.

I am 26, and none of my doctors including my rheumatologist have seen anyone else with this same problem. That's why they are sending me to someone at Duke who has treated at least 2 other people with polymyositis and overlapping cardiomyopathy.

Unfortunately I think y'all are right, I don't think this is as rare as my doctors are saying it is. I am afraid there are a lot of undiagnosed people out there that might have damage they don't know about--so if anyone is reading this and has never had an EKG go get one!! It's super quick and not invasive.

It's pretty frustrating and I feel like I'm losing my mind a little here. I guess what I want is some reassurance that everything is going to be ok, but no one seems to be able to tell me one way or the other that it is or isn't :( ahhhh!!!

Oh but my CPKs are actually normal now. Ha!

Hi Okapi2, I have cardiomyopathy with valve regurgitation. I see the cardiologist once every six months. A Fib is common with DM, but I have not moved into A Fib yet. I have an echocardiogram once a year. An echo is like a heart ultrasound.

Things can get better with the heart. I had an enlarged right side of my heart at the beginning of DM. My enlarged heart has returned to normal size. I would not worry about heart issues just watch carefully. I get mild low grade headaches. I also have dark urine from chronic kidney disease, but heart issues can also turn urine a darker color so watch that too. Like Nanny mentioned, I also take d3 and magnesium.

I hope your treatments will be helpful. Best Wishes.

I had a full work up at diagnosis. This included a cardiac echo. My Rhumatolost was aware my diagnosis could involve a heart problem. I did not have any heart problems but I have Anti Jo which can cause lung issues. Knowing the auto antibody will guide the doctor. My Rheumatologist knew I had Anti Jo, he looked for it, having found it he knew I needed fast aggressive and long term treatment. He looked for lots of things, the work up at diagnosis is very important to find any under lying issues or causes. Best wishes to all. Autumm