Anyone take new drug Camzyos (mavacamten) for HCM?

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

I have told him about this group and how awesome it is! 🙂

Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great! We talked about my dr.'s phone call regarding the "protocol" that said I need to stop taking Camzyos for a month and how he said no I want to keep her on 2.5 mg. Don't do this to her! She is feeling great! They said OK! They also said a pharmacist cannot override a doctor's orders.
So I talked to the specialty pharmacist today and she sent my prescription. It will be here Wednesday. I have 6 pills left, so will be just fine! Sooo if this happens to you, your doctor can override the protocol for you. I will have another echo next month, not in 3 months, to make sure everything is still fine. Hallelujah! 🙂

I told him your message today, and thanked him for being my advocate! He said of course! He also said he told another patient about this today! I am the only one in the practice taking this as of now. I hope others can be helped too!

I am SO very happy to get your report today! What a great doctor! I bet you are feeling much relieved like a weight has been taken off your shoulders. Now you can go on your girls trip and not have this hanging over you like a dark cloud! Thank you for letting us know how it went @kelliw! Blessings abundant to you 🙂

@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!!!!!

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! 🙂

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!

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

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.