Anyone take new drug Camzyos (mavacamten) for HCM?

Hello group!
I thought I'd send an update on my journey. I met with my doctor yesterday and we had a good discussion about the impact to my quality of life since dropping to 2.5mg. He has agreed to put me back on 5mg as this was clearly working well for me. I'm looking forward to feeling great again.

Yay Hans! This is such great news! Thank you for the update! I love how our doctors are able to listen to us and do what is best for us. I have my echo today. 🙂

That is great news! 🙂

Good morning Everyone! I just got back from Steamboat Springs, CO, last night, and had THE BEST time! I was totally fine in the altitude (I went from sea level), was able to go up to 9500 feet, on the gondola for sunset happy hour, went tubing down the Yampa river and white water rafting! I am beyond thankful that I have my life back! 5 months ago, this would have been so difficult! Yippee!! I have my echocardiogram this afternoon. I am still feeling very good on 2.5., and this morning my BP was 125/87! It hasn't been that low for quite some time. Yay! 🙂

I am so glad your doctor listened to you and you were able to make your needs known. This is not a one-size-fits-all deal, and being able to have input, be heard, and responded to in a positive way must feel like a big win @hansj!
This up and down, back and forth stuff must be frustrating for you! How long after going back on the 5mg will you see your doctor again?

Thank you for sending a virtual "Post Card" from your trip @ kelliw!
Sounds like you had an amazing adventure...sunset gondola happy hour, white water rafting, being with your good friends. And feeling alive again!
It must have been a strange feeling when you realized you were not struggling or gasping for air, that you were just normal. Hopefully you got good news from your echo?

It was a great feeling and one I am constantly so thankful for! I go to the doctor next Monday to go over results of yesterday's echo, but I did sneak a peak at the computer screen and it looked like my LVOT is still at 8, which is the same as the last 2 months, so will most likely continue with the 2.5mg, but we shall see what he says. 🙂 Have a great day!

I'm scheduled for another echo in 5 weeks just to confirm all is well. My doctor says that while I was his second patient on this drug, he now has many and feels comfortable overriding protocol where it makes sense.
I completely understand the need for the protocol as they try to find the lowest level required to eliminate HCM symptoms for each individual while not decreasing heart pumping too much.
Did anyone else ever play that video game "lunar lander" back in the early 80's? the strategy feels a lot like that LOL!

Good morning-I am wondering if any of you have had any procedures done, like a colonoscopy, or surgery since you started taking Camzyos? I am wondering about the twilight or regular anesthesia they give and Camzyos.

Hello everyone. My doctor just prescribed mavacamden and I’m looking forward to some relief. Just wondering does anyone have pvc’s as well and does mavacamden relieve or reduce any pvc’s? Thanks.