Anyone take new drug Camzyos (mavacamten) for HCM?

I started Camzyos on June 27. I've had dizziness that's improved but still there. And probably the symptom that bothers the most is a racing heart, almost like vibration. An anxiety-type feeling. It started right away, seem to get better, then worse again. I had Echo a week ago and they called me and said they were going to give me the 2.5mg dose. I called them yesterday about the racing heart and they said to stop the 5mg for a week and then start the 2.5. I stopped last night and the racing heart feeling is better. I guess we'll see what happens when I start the 2.5mg in a week. My heart rate and blood pressure were fine throughout.

Thank you! I will definitely talk to the doctor and the specialty pharmacist before I have any procedures done. 🙂

My doctor is ultra cautious in general. She advised me to wait until I was well settled on Camzyos before having a colonoscopy. Between the prep and the sedation it might be too stressful. My gradient is still very high after two months on the drug. 130. Might be different for you.

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.

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.

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!

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!

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?

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?

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! 🙂