How long before benefits of Camzyos were realized?

Hi @garyhawthorn, and a warm welcome to Mayo Clinic Connect. You've come to the right place to ask questions of other folks taking the new(ish) drug Camzyos.
Have you had a chance to read some of these brave people's stories? People like @jaymaysea and @kelliw.
If you get a chance, read some of their posts. They are honest, frank, uplifting and inspiring!
Here's the link:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
There are quite a few members who have shared their journey with Camzyos. Since we are all unique individuals, no two of us are alike, hence...all these great stories!
HOCM is the weirdest thing, isn't it!?
For me, before my open heart surgery (I could not take Camzyos) I had your same symptoms. I had good days, when things felt almost normal, and days I swore I may die because my heart was going to stop! It's a total rollercoaster for sure! And not fun living with either I may add.
It's important your doctor is up to date on this, and also for you to be your own best advocate. You know you better than anyone else does!
How long have you known you had HCOM? Were your symptoms categorized as some other heart disease before you got your HOCM diagnosis? Is your cardiologist up to speed on HCOM?

Hi @garyhawthorn and welcome to the group. I've posted this elsewhere but in my case at 2 days on Camzyos (yes, not a typo) I was noticing that some things should have hurt a little more, 'cause it was clearly WAY too soon to see results. At 12 days I had no symptoms. None. After something like 17 years of deterioration to the point where bending over to tie my shoes put me down for a good 10 minutes, and a single flight of stairs needed 2 rest stops. Seriously, 12 days. I know lots (probably most) of the folks here didn't get such instant improvements but I got lucky. I wish the same for you.

Hi @garyhawthorn. I was prescribed 5 mg Camzyos & was told by the 4th week, I should be feeling significantly better. My symptoms included shortness of breath and chest/arm pain on stairs and upward slopes much worse after eating and difficulty bending over to pick things up. By the end of my first week, I thought I had to be imagining it because my symptoms had almost entirely disappeared. However, when I returned for my echocardiogram after 1 month, I was informed I had responded too well (LVOT was too low) and my dose was reduced to 2.5 mg. I still feel much better but sometimes notice some symptoms on exertion.

I started recognizing a difference in less than a week.
Felt better, easier to breathe.
Good luck.

I expert the same in just a few days..

I am doing great on Camzyos 5 mg my gradient pressure went down from over 200 mm Hg to 25 mm Hg and my septum diameter went down from 2.2 cm to 1.6 cm!!! in only 4 weeks echocardiogram. My minor side effect was gone in 2 months. I am very happy with my medical treatment with Camzyos.

I started on 5mg and felt better within a few days. But echocardiograms showed no change in gradient. My doctor urged me to have surgical myectomy. I asked for higher dose of Camzyos instead, and more time. I arranged for pharmacogenomic test which showed that I’m a rapid metabolizer of Camzyos. My dose was eventually raised to 15 mg. Gradient finally went down and after 9 months total on Camzyos, my gradient is normal. I just finished a 17 week cardiac rehab fitness program. I’m in the 90th percentile for fitness for women in their 70s!!!

I want to encourage you to check in with your Cardiologist/nurse advocate about your symptoms. Mine is very helpful and is part of the reason I stayed on Camzyos. I noticed results right away and only got better as my dose increased. I am now on 15 mg and am not sure what my life would be like without Camzyos. I do want you to know when I moved from 10 mg to 15 mg, I didn't feel well and was going to get off completely. After talking to my nurse advocate, his suggestion to increase my metoprolol while I stayed on my current Camzyos dose made all the difference for me. My point is: each case/severity is so different, I have learned close contact with my Cardiology team is what has helped me be informed and experience positive results. Good luck to you. This MAYO clinic blog is a wonderful source of information! Keep connected and asking for insight.

I started on mavacamten 19 days ago. No noticeable improvements yet, but I'm trying to be a patient patient.

I felt dizziness for the first time last night and a little today, but it passed. My first post-mavacamten echo is next week, so we'll see.

I had light dizziness the first night week but it went away. No problems since then for my body adjusted to that. I would still talk to the Cardiologist for he has to evaluate the risk (send him a text message describing exactly what time and for how long it happened).