Anyone take new drug Camzyos (mavacamten) for HCM?

@elmore71111, thanks for checking in. Your new journey on Camzyos is just beginning! Thank goodness for all these great members sharing their experiences with each other. Nobody knows like someone who is going through it or has gone through it. It sure seems like a roller coaster ride...up, up, up, up and then BAM! Over the cliff edge! Just having HOCM is stressful. But the added anxiety of a brand new medication with no long term studies, being at the mercy of a drug company's protocol...yes, sounds stressful to me. I hope you sail through the next few weeks with little to no side effects. @kelliw, @hansj, @jaymaysea, @nbs and @starbuck41 have all been on the road before you...each one has a bit different experience, so I hope you can lean on their shared experiences. Mayo Connect is here for you! When do you see your doctor next? Are they easy to get in contact with if you need questions answered or need help?

Congratulations on starting. It took me months to get everything in line to start taking the drug. I don’t know if I would have moved forward without the support and insights of the wonderful, caring people in this support group.
Listen to your body and be vigilant. Reach out to your cardologist if you have symptoms. I started to feel crappy around the end of the second week. Had an echo done (trust but verify) and everything was fine. My cardologist told me I should start to feel better once the drug built up in my system. My heart rate is still up and I am still fatigued; but the lightheadedness is gone. Overall, I am feeling better now.
Praying for you!

I just started taking camzyos yesterday, but I am on a beta blocker, when I spoke with the clinical nurse navigator from camzyos and the pharmacist from the specialty pharmacy, they both said that was fine. I really hope you continue to feel better with each passing day! I just started, so I’m hoping and praying this works! This has truly been such a nerve wracking journey and I hate to hear how much added stress you’ve had to deal with!

Thank you @nbs. I recall you had to get off Verapamil two weeks before starting Camzyos. It was one of the reasons I questioned taking Diltiazem. They are both calcium blockers and on the BMS list of “usually not recommended”.

Metoprolol is a beta blocker and is not on the BMS list. My cardologist mentioned putting me on a low dose since my heart rate and blood pressure are both up.

I am still on Metoprolol and have been on it since the beginning (six weeks). I will ask why.

Thank you so much for asking. The dizziness has subsided, thank goodness. But, I am still fatigued and a little short of breath on exertion. Overall, I am feeling better.

My results from the echo on Friday showed my heart’s pumping performance was normal. My left ventricular ejection fraction (LVEF), was 60-65% (normal range: 55-70%). So my cardologist said it was safe to stay the course with Camzyos and that he expected that I would feel better as it reaches more peak effect with time.

He also said I could now stop diltiazem. I did not tell him yet that I had stopped the second day 😜because it’s counter-indicated. My heart rate is still up. So, he said we should discuss a low dose of Metoprolol. It’s also counter-indicated for Camzyos. Does anyone in the group take a beta blocker while on Camzyos?

Prior to starting Camzyos, my obstruction was only mild at rest, but severe post-exercise obstruction around 230 mmHg. I had a limited echo on Friday. So I will be very interested to do a stress echo after I have been on Camzyos for a while.

How are you doing @jaymaysea? Did your dizziness and crummy feeling get any better?

Thank you! Yes I feel so thankful I have him as my doctor! He is the only doctor in the practice of about 9 others, who is doing the Camzyos journey!

Thank you, Debra! I am so relieved! He is pretty amazing! Yesterday I reserved 6 spots to tube down the Yampa river on our trip! Going to take the gondola up and have lunch at the lodge, and then do this nice mile walk on one of the trails. I cannot wait, and am beyond thankful that I will be able to do this fun stuff in 2 weeks! 🙂

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!