Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @avcowie, is tinnitus a known side effect of Camzyos? That would make anyone crazy 😮
I'm glad you are feeling better and see your doctor soon. Have you thought of the questions you want to ask the cardiologist? When is the surgery scheduled that you want to reschedule?

Hey @starbuck41 , what did you learn from the cardiologist after your last visit? How is Murphy? Is he keeping an eye on you?

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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?

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.

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

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 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.

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.

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.