Anyone take new drug Camzyos (mavacamten) for HCM?

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!

Thank you for sharing your experience @captainterry. I have been advised by my Cardiologist to take this medication as one of the options. I am trying to weigh my options and determine should I go ahead with this medication or opt for alcohol septal ablation? I am 40 years male.

I was changed from Metropolol to Diltiazem before I started taking Camzyos and I had a terrible reaction to it. I was already struggling, but Diltiazem made it worse. I felt like I was going to die-it really made me struggle for breath. I couldn't walk from my car to my school office without getting really winded and having to stop a few times. Then the trek to my classroom seemed like a mile away. He switched me back to Metropolol and I was immediately better. I have also questioned continuing with Metropolol and Pantoprazole because they both come up as a drug interaction. I questioned my doctor and the specialty pharmacists and they all said it is fine. Is anyone else on either of those?

Thank you @nbs. Your insights are really helpful. I am afraid that the combination of the two drugs may slow my heart too much, too quickly. I have not found the Dilitiazem to be particularly helpful anyway over the years. I was misdiagnosed for years. I trust my new cardiologist. But I also give great weight to first hand experiences. Thanks again.

That is a good question. I think Camzyos starts working very quickly. Within the first week I felt I was handling hills and the stairs a bit better. Two weeks I definitely felt that it was working and each successive week there has been progress. It has been exactly one month and I am back to my morning walk (2.5 - 3+ miles) at a very good pace and able to walk up hills without slowing down or stopping. I can go up and down stairs all day long. However, after two weeks I started to feel tired to the point of feeling like I needed a nap in the early afternoon. I have only been on it for a month and my dose has just been changed from 5 mg to 2.5 mg which is probably a good idea. The Verapamil that I was on has the same drug interaction concerns as your Diltiazem.

That makes a lot of sense to me. How long did it take you to feel the affect of the Camzyos? Did you have any side effects?

Thanks so much for responding.

I sent an email this morning and I ask him the specific question. I have already gotten a response. He indicated that it takes about two weeks for Camzyos to build up in your blood system, so he wants to make sure I have coverage during that time.