Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @dwc62, I'd like to add my welcome to @karukgirl's. I moved your discussion and combined it with the discussion @karukgirl shared, titled: "Anyone take new drug Camzyos (mavacamten) for HCM?
"- https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/.

I did this so you could meet the many members sharing their experience taking Camzyos like @newtosohcm and @whidbey.

@dwc62, if you are comfortable sharing, were you recently prescribed Camzyos or are you just trying to learn more about it before you start a new medication?

How many months have you been on Camzyos?

Welcome @dwc62 . Lots of supportive people here to bounce questions and concerns with. I just started Camzyos exactly 5 weeks ago today. So far I'm one of the lucky ones who have had only positive side effects. Within just a couple days my symptoms were starting to vanish, and since the 2 week point I have not experienced a single instance of palpitations, dizziness, chest pain, or any of the other things that had been dogging me for 17 years. I now just live in fear that this is too good to be true and Rod Serling is going to jump out from behind a bush and say "just kidding." Seriously, if it continues like this, it's a miracle drug for me. If you are on this path, I hope you have the same results.

The coordinator finally replied and said it hasn't been unblinded yet and may be a couple years. She said when it is unblinded they will try to contact everyone.

Ahh, so you are still blind...that must be frustrating, but at least you know why you haven't heard. Not that that is helpful to you right now, right? So what is your plan, do you start Camzyos now? There are so many good stories here about it. Some not so good either, but at least you will be in good company.

I've been taking for 3 weeks have my first echo on 11/8.

@nanamc1957 that is next week!! I bet you are anxious and excited to find out if it's doing what it's supposed to do! Keep us posted, okay?

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

I am planning to try Camzyos. I didn't feel at all different before, during, or after the clinical trial so I think I was placebo. When he did screening exam for the trial he said at that time "he wouldn't recommend referral for septal reduction". I'm hoping Camzyos and losing 100 lb will help me get around better without open heart surgery. So far I'm down 20 lb in 2 months.