Anyone take new drug Camzyos (mavacamten) for HCM?

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.

Hmm...🤨 I would be a wee bit concerned as well. Good thinking on your part to contact him for confirmation...Did you ask him to verify this is correct? After you are the "trust by verify" member 😉

I had to get off my calcium blocker - Verapamil - two weeks before starting Camzyos.

I don’t actually see my Dr. until the end of July. But I have access to him through the patient portal. My monthly echos have been scheduled for 7/10, 8/7, and 9/4. I sent my Dr. a note this morning asking why he wanted me to take the Diltiazem for the next two weeks when it is counter indicated.

While we wait for others to chime in on their experience and if they were taking Diltiazem at the same time, I just wanted to say I am thinking of you and hoping the best for you getting back your life! When do you see your doctor again?