Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Rover27- I have been on Camzyos since March 30th and have had very good results. I would definitely call your cardiologist. Maybe the 2.5 might be better for you to start? He/she would know better. I had dizziness for about 2 weeks, off and on the 2-3rd week in. It went away. Sometimes, when I lay on my left side I get a couple of sharp pains, which kind of scared me, but it hasn't happened for awhile. I am taking my BP every morning too and writing it down as well as how I am feeling each day, in that gray journal BMS sent in the welcome pack. I started out on 5mg and they lowered it to the 2.5mg because my heart responded so well to Camzyos. I have noticed I am feeling tired in the afternoons, since going down to 2.5, but other than that I feel great. I hope things even out for you and you start to feel the benefits!

Thanks for reply. The racing heart type feeling is better, but still dizzy and low energy. No other med should be a problem. I will wait another couple of days. Have echo on the 12th.

I took Metoprolo and it made me super dizzy so be careful I stopped taking it after a week

Good info to know. How many mg?

I just had my second echocardiogram being on Camzyos. I started with a LVOT gradient of 100mmHG and my EF was 79. After taking 5 mg for a 4 weeks my LVOT gradient dropped to 16mmHg and my EF was 73. I was changed to 2.5 mg camzyos for weeks 5-8 and today my LVOT gradient increased to 21mmHG and my EF was 67. All great news as I would have been taken off the drug if my LVOT was below 20. I am feeling great and fortunate that I am reacting well to camzyos so far. As many of you know, the opposite reaction is frustrating and can be frightening.

Thanks for letting us know. Positive news for you is positive news for us all.

Great news @nbs! Thanks for sharing that with the group. It must be comforting knowing your results are positive and things are going well. How long do they plan to keep you on the 2.5 mg before another echo?

The first three echos are 28 days apart. This was my second echo. I have another one in approx. 28 days. If my numbers stay in a normal range, I will be on 2.5 mg and then get retested every three months if there are no concerns. This is the protocol right now established by the drug company. What I find comforting is that I am fortunate that a drug has been developed and put on the market the same time I was diagnosed with OHCM and that it seems to work. Even with our small group there are people who have been debilitated for years where their only final resource was surgery. I do realize there is so much that is unknown about Camzyos being an orphan drug (the only one of its kind). Has anyone else signed papers allowing their treatment, medical tests, etc. to be used for research purposes? Thank you @karukgirl for your encouragement!

Good Morning Camzyos Family,
I am on day 31 of taking the drug. The last two weeks have been uneventful - negative or positive. I am still short of breath upon exertion ( walking and going up starts) and walking and still fatigued. So the drug doesn’t seem to be helping.

I had an echo on Monday. The Dr.s office said my pumping action was good and my gradient had improved. So they want to take me from 5mg to 2.5mg. I pushed back because so far I am not feeling any relief from my HOCM symptoms. I reminded them that it’s my gradient upon exertion that is so bad. At rest, which is the condition during a regular echo, my gradient is not that bad. Heart rate and blood pressure are still elevated. I will see what my cardiologist has to say.

It’s stressful that you have to be your own advocate and so proactive in your health care. Will keep you posted.

Totally agree that we need to be proactive with our doctors. This is a paradigm shift in treating OHCM and it is not comfortable for many physicians.

I’ve had the opposite experience to yours: symptoms improving, more energy and almost no angina. BUT my echocardiogram hasn’t changed. Third one coming up July 27. I’m on 5mg and told my doctor I want to
Increase dose if the gradient does not go down. It’s 130 at rest and 150 on Val salva. But I’m feeling better! My family can see the difference. I’m going to remain optimistic (mixed with anxiety 🤪) for a few more months. I think this drug is amazing and it seems there is great variation in response.