Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Lakehappy, I am in the same position as you , no side effects, no benefits and going for my scan on Thursday.

I've been on the medicine for 1 month. Thankfully no side effects but haven't noticed any change in symptoms. I have my appointment tomorrow for scan and hopefully there will be some change. I'm being patient as many of you have said it takes awhile. Here's hoping.

Please let us know what your doctor says. I was told it is not a cure but a remedy.

Good Luck, I am also from Canada and yes the team was very helpful.

When I signed up for clinic trial they shut off my dilti because I take metaprolol beta block. The trial signup sheet said "You are not allowed to take the following medications while in this study: .... combination of β-blockers and diltiazem are also not allowed".

Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada has been so helpful and supportive. Pharmacist had some concern about me taking Diltiazem but I’m not sure why.
All the best to everyone.

It is also prescribed to help reduce septal thickness

I'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out and got the other nurse who did my previous echo to have her look at it. She tried a few things and they pulled up my previous echo. They didnt include me in the discussion but it seems like they couldnt find the obstruction this time. I have seen the valve leaflets folding back over the wrong outlet blocking flow at the end of pump for the last 12 years and while I was on mavacamten clinic trial for 6 months. When I asked them "Does that mean I'm cured?" they said my doctor would talk to me. Do you know if Camzyos is only prescribed for obstruction or if it can be used for ordinary HCM to help slow hard pumping or help reduce septum thickness?

UPenn
NYU
Morristown NJ Hospital
I have been to doctors at all three places. I was on it for 6 months.
Good luck to you.

I had a brief period recently of having the typical symptoms of OHCM (breathing issues when walking /going up stairs, chest pressure, etc). My cardiologist instantly had me get an echo - everything is great. My son said to me, "don't you become anemic?". Six days on iron and I was back to normal and my blood workup did came back that I was anemic. My cardiologist is thrilled that Camzyos has now been working since June and my internist isn't thrilled that I was anemic but I am. Sometimes hoofbeats are not zebras but horses.