Anyone take new drug Camzyos (mavacamten) for HCM?

@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.

I am so hopeful for you that you will have the same success that many of us have had! I noticed a difference within a couple of days. It feels so wonderful to have my life back and to be able to walk again, play golf, lawn bowl, and today even started water aerobics again! Please keep us posted how you are feeling! 🙂

Thank you for your response! I am sooo thankful for this forum and that we can all do this journey together! It is so helpful! 🙂

My specialist cardologist analogized an alcohol ablation to a controlled heart attack, because it destroys heart muscle. He also advised that in some cases a pacemaker may be necessary after the procedure. But, said it was an option. My regular cardiologist advised against an alcohol ablation and said it was not imprecise enough. She thought I should go straight to surgery.

When I first came to the group my question was whether I should try Camzyos or go directly to open heart surgery. I decided to give it a try. It is not for everyone. This is my second day. I am praying it works for me.

There is lots of really good information on this site. I encourage you to take some time and read over the comments. I think you will find them helpful in making your decision.

My cardiologist switched me from Nexium to Pantoprazole in anticipation of taking Camzyos. When I gave the speciality pharmacist my list of meds, she said Pantoprazole was fine. If you put it into Drugs.Com it indicates a moderate interaction rather than major.

I am on currently on Diltiazem and my Dr. took me to overlap the two drugs for two weeks because he wants the Camzyos to build up in my system. I am taking the Camzyos in the morning and the Diltiazem in the evening. This is only my second day. So I have only overlapped the meds for one day. The experience of another member of our group was that the positive effects of Camzyos were felt after only a few days and they were told to stop a med similar to Diltiazem 2 weeks before they started Camzyos. So I am being mindful that I may not need to take both for two weeks.

I think cardiologist and pharmacist are still figuring the interactions out and while you shouldn’t ignore their advice you have to listen to your body and let them know what is working and what is not.

I really appreciate you bringing Pantoprazole to my attention. I had assumed it was fine. While Bristol Myers Squibb has a list of meds that are counter indicated, the DrugRX site identifies additional meds that are not on the BMS list of meds that are not recommended.

Trust but verify!