Anyone take new drug Camzyos (mavacamten) for HCM?

I was blessed to have been referred to a cardiologist who specializes in HCM and is an advocate of Camzyos. That said, when I followed up with my regular cardiologist, who referred me to the specialist, she told that she didn’t know anything about the drug, didn’t understand how it worked, and thought I was headed to open heart surgery. It made a scary decision about whether to take the drug even scarier.

This group gave me the comfort to move forward. I am on 5 day. So far so good. I have not noticed a change yet-positive or negative.

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.

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?

I truly have such a wonderful team in place, but it took a very long time to get to a place where I can say that. My doctors are so thorough and careful and I feel so blessed to have each of them. I am very scared about starting the new medication, but for the first time, I feel hopeful, I feel like a plan is in place with a backup plan as well and for so long I felt like everyone kept telling me all the dangers and I heard many ‘I don’t knows’, I kind of felt like I was waiting to die, now I see the wheels spinning and movement is happening, so while on one hand I am terrified, on the other I am so hopeful and excited. I just received the order for the camzyos on Tuesday and they told me that it will take about a week or two before I have it on hand, with getting insurance approval and all. So I haven’t started it yet, but hopefully very soon! 😊

Rebecca/@elmore71111, Welcome aboard! I am so happy to hear that being able to read about all these shared experiences has helped you make decisions about your future. It's a wonderful place, full of so much information. I know it must be very emotional thinking about not only having HOCM, but now needing to begin using a new drug that hasn't been around very long. If you have been reading on here, you probably have read that a lot of members have had terrific results that have changed their lives. Some have not been so lucky. I hope for you, that you are able to tolerate Camzyos and get your life back. It is really important to be followed by a doctor who is experienced in treating HCM. Do you know if your doctor is experienced in this disorder? Have you started on Camzyos?

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!

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.

@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 read this article in January before I had been approved to take Camzyos and before I changed to a doctor from Washington U's cardiology department. This is very helpful for understanding this drug (especially the first three paragraphs).
https://www.barnesjewish.org/Curiosus-Mag/Article/ArtMID/6756/ArticleID/2281/NEW-DRUG-POSITIVE-RESULTS-FOR-HYPERTROPHIC-CARDIOMYOPATHY