Anyone take new drug Camzyos (mavacamten) for HCM?

Hi, my name is Rebecca and I just recently was told that I will be started on camzyos. I have been so scared about this new step in my journey, but reading everyone’s comments on here is so encouraging. I know I have not introduced myself before this but I wanted to say a true heartfelt thank you to everyone in here, your wisdom, experiences, and words of encouragement to each other has helped me so much!

How wonderful you live in an area with such great access to HCM experts! And you have an inside track with your husband's expertise. There are several others in this community from Canada as well, who have recently started Camzyos. @hansj for example has done really well. If you get some time, read the posts on here. Hopefully you will learn more from people who are on the same pathway as you.
Viral myocarditis? Yikes!! That must have been very scary 😮 I hope you are doing well now except for HOCM. Has your cardiologist been impressed with your test results? Did your LVOT pressures normalize?

Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this site, I was shocked when my cardiologist suddenly blurted out "you need open heart surgery" when I went to talk to her about Camzyos. I am sure there is a better way to share that opinion. She did not recommend Camzyos because it is new. Yes - it does take courage to be in the forefront of trying a new drug. And it is an adjustment for physicians to embrace a new paradigm of treating HOCM. If indeed my kids have inherited the gene, I am happy to contribute to knowledge about a non-surgical intervention. Not everyone has access to surgeons who have the experience and track record of doing myectomies successfully so Camzyos may be a safer treatment for many. I was diagnosed about 7 years ago, having had a bout of viral myocarditis 3 years earlier. Managed on a calcium channel blocker and then added Rythmodan. I am fortunate that I live in a place with world class expertise in HCM (Toronto) including an excellent surgeon who specializes in myectomy. And even more fortunate that my husband, a professor of medicine, saw reference to mavacamten in the literature, and encouraged me to explore it as an option. The doctors at the HCM clinic here were not offering it a few months ago (January), and recommended open heart surgery. but I think they are now offering Camzyos as an option. I don't know how patients find out about it unless they read medical literature, or have doctors who are open to trying it.

Thank you for the link to the article about HCM. Very clear and helpful.

@nanakpm, welcome to Mayo Clinic Connect! Thank you for sharing part of your story with the Hypertrophic Cardiomyopathy group. I'm so glad to hear that you are feeling better and more confident in Camzyos every day. You have six weeks experience. Others are only a day or so and some others are a few years into it. You will find that if you spend anytime reading on here, that you and the Camzyos group is pretty active, and very willing to share each other's experiences with the community. Every person is an individual and therefore each person will have a different experience. We are so unique! I had open heart surgery at Mayo in Rochester two plus years ago. Camzyos was not an option for me. I would say to anyone who may not respond to Camzyos not to fear open heart surgery as an option if the drug does not work for them. True...it's a BIG surgery. It's not something anyone who has to have it wants to have it. But you are already brave! You are trying a new drug without knowing how your body will react, or what side effects you may experience. That takes courage too. When were you diagnosed? Is your cardiologist familiar with HOCM/HCM?

I had a similar experience. Cardiologist recommended open heart surgery. Having carefully read everything I could find on camzyos, decided it made sense to try it first. Very glad so far. And not worried about side effects because I am closely monitored. I’m
More worried about having to have surgery but feeling more confident in camzyos every day. Started about 6 weeks ago and slowly feeling better. It’s amazing to walk without angina!

I had a similar experience. Cardiologist recommended open heart surgery. Having carefully read everything I could find on camzyos, decided it made sense to try it first. Very glad so far. Started about 6 weeks ago and slowly feeling better. It’s amazing to walk without angina!

I can imagine you must be anxious @jaymaysea! I know I would be too 😮
I suppose two days is not enough time to determine it's working yet. But every person is unique so who knows? I'm glad you are feeling positive and pray. That is a great approach to this situation. Looking forward to hearing back from you on your progress.

Hello @saurabhshrivastava20, and welcome to Mayo Connect. You will find that if you spend any time on here, you are not alone and the community really wants to share their experiences to help one another. There is nothing like Mayo Connect, and @jaymaysea has offered you some really good advice. Camzyos is relatively new, and therefore there is not a lot of history with it yet. It has been a "miracle" for some, and for others quite the opposite. One thing for sure is, having HOCM and trying to decide on trying a new drug versus open heart surgery or alcohol ablation is not an easy decision. From what I know, and I am not an expert, the alcohol ablation is not as controlled a procedure as a septal myectomy. Of course your doctor is the one who gave you your options, but I honestly feel you need to educate yourself as much as possible about HCM and the various treatments available so you can be your own best advocate. Take a poke around in here. You will find a lot of good information that may help you in your decision. Also, it is super important that your doctor is familiar with HCM, do you know if your doctor is specialized in treatment of Hypertrophic Cardiomyopathy? How long have you known you had HCM?

Thank you! I have been hypersensitivity to every twitch of my body since I started on Monday. My blood pressure was up yesterday; it was probably because my anxiety level is so high. But, I feel positive and pray that Camzyos works for me. I will keep the group posted on my progress.

This group has made such a difference for me. It really helped me to move forward. Thanks to each of you.