Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Jess51,
I’m from Victoria BC too!
I had OHS Feb 1 for my HCM but it was my Mitral valve causing most issues so they replaced it and left my heart wall alone. I tried Camzyos prior to that and it made me feel worse. Now I’m hoping it will work better for me. My cardiologist is setting up my first new delivery. So I hope I get it soon.
How are you doing these days? Have you increased your dose?
Thanks in advance ❤️

Hello from Victoria! I am 2 months plus into Camzyos and it continues to be very beneficial. I have had 2 ECGs since I started and I guess all looks fine as my dose of 5mgs has been maintained. I am happy to hear that you are also benefitting. Such a nice change!

so did the Camzyos or the metroprol xl help with your stress induced anxiety? I seem to be having a lot of anxiety issues.

Hi, im glad to connect to a group of folks who can share info of their individual experiences with Camzyos.
I am overall a healthy 65 year old! I had always been active until noticing a difference in my breathing when walking uphill or exercising a lot. This became evident around 5 years ago but I was initially diagnosed with some stress induced anxiety by a former cardiologist who passed away. In search of a new one last year I came to find out after undergoing heart ultrasound, heart MRI and heart stress test my heart was not in good shape.
Luckily on Camzyos I now have something other than open heart surgery to hopefully continue to improve my heart health and symptoms.

thank you so much for your reply. So you are still on 12.5 of Metropol and five of Camzyos? good to hear from you.

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

Hello @isamac, and welcome to Mayo Connect.
I'm glad you found the Camzyos group, have you had a chance to read some of the posts?
I did not qualify for Camzyos and had a septal myectomy at Mayo Clinic, so I can't speak to your current experience and what you are going through, but I know there are a lot of other Camzyos folks who have similar stories.
I'm glad to hear you are better, that sounds promising. It seems Camzyos works differently for each person because we are all so different and unique, so perhaps going forward your HOCM will improve.
Are you an active person? Are you able to walk and exercise?

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
This support group has been an endless source of information and encouragement.