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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
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!