← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@karukgirl

I bet it gets cold in the the winter up there!
You have a right to feel concerned about your treatment. Especially since being misdiagnosed for so long. I know the feeling, and was shocked to learn that after the years of misdiagnoses, my heart was failing too. I had no idea and it was not until I made my way to the Mayo clinic I learned this news. They did what no other cardiologist had done. Two very simple tests. A chest x-ray, that showed my heart was enlarged, and a simple lab (BNP) that showed my heart was failing. It woke me up and scared me enough to decide I wanted to live a better life than the one I was. I couldn't bend over to put my shoes on without experiencing tachycardia, head rushes, and shortness of breath. The symptoms I got after eating a bigger than normal meal were the same. I thought I was crazy! My question after all this was why didn't anyone ever order these two simple tests? I was dumbfounded.
I hope for you as you begin this journey on Camzyos is one of confidence in your doctor and the process, which it sounds like you have. It must be a difficult decision to make, and one I can't imagine. All the Camzyos people on here are very brave people in my book. Open heart surgery, though scary, seems like a much easier decision. Are you ready for tomorrow, your first day on this new drug?

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Replies to "I bet it gets cold in the the winter up there! You have a right to..."

Good afternoon. Meds arrived Tuesday and I've had 3 doses @5mg so far. No negative side effects yet. I've done a couple things where I thought "hmmm, that wasn't as bad as is should have been" but I think that's probably purely psychological at this early stage. Still recognizing the same symptoms as usual, and as described by others here. Chest pains, heart pounding, shortness of breath dizziness on any exertion. Bending down to put on shoes? Yep. Walking 1/2 block after even a small meal? Yep? Stairs? Yep. Carrying a bag of groceries up stairs? Yep yep yep. NYHA III. Got a call from my nurse-case-manager on day 2 just to ask how things were going, and see if I had any questions or concerns. Super-responsive team so far. I'm hopeful that over the next couple months things will start to go back to where I can do normal things again. Echo in 3 weeks or so. And yes, winters can get down to -40F but that's unusual. -5F would be more normal. It's been interesting to read some of other people's issues with having trouble in the heat. I have a lot more trouble (HCM-wise) with the cold. Would be great if I could take up skiing again!