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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 "Welcome to the Family boatsforlife! I think you will find this is an amazing group that..."
Hey @jaymaysea thanks for the encouragement. I'm way behind your curve at just 14 days now. After just a few days I felt like I was improving but figured it was all in my head. At day 9 I accidentally did 3 flights of stairs in rapid succession and felt ... NOTHING. No chest pain. No dizziness. No heart pounding. No shortness of breath. Just nothing. Previously a single flight of stairs would just about kill me. From day 9-12 it was the same. Not one of my normal symptoms. It was almost confusing not knowing what I should do at the top of stairs or whenever I would usually have to stop and wait for things to subside. But the last 2 days have been a little bit of a setback. I've felt a little bit of what I'm used to feeling. Nothing at all like it has been for the last many years, but not quite as great as the previous few days. I'm not worried about it (much) as it's still very early days. To be honest, I wasn't expecting to detect any positive change for a couple months, so this is all a bonus even with the tiny step backward. My first 4-week echo is scheduled for 23 Oct. @jaymaysea, I'll keep in mind what you said about advocating for a stress echo should that become a thing. Like you, my problem is under exertion, not at rest. I'll post again in a week or two or if I have a significant change.
Great response @jaymaysea! Thank you for sharing that...it's not all sunshine and roses, and you and some others have had a rough road to travel on. Thanks for letting @boatsforlife know how important it is to be your own advocate too. And the drug interactions! That's important. I was like you...little gradient at rest, huge under stress/exertion. If you didn't push for yourself and let your doctor follow protocol, then who knows where you would be right now. People are unique and different, they are not algorithms like you so eloquently stated! I hope you get continued improvement. When is your next echo?