Anyone take new drug Camzyos (mavacamten) for HCM?

You are seeing positive results! This improves your quality of life. Stay positive.

I feel so frustrated for you. I was put on 2.5 because after the first month because my LVOT with Valsalva (it is a breathing exercise used during our echos) went too low. During my echo, I was told to bear down on my abdomen and slightly hold breath in order to achieve the pressure in my left ventricle as if it was being obstructed. So did your doctor tell you what your pressure was based on the Dynamic LVOT gradient with Valsalva to help you understand why he was decreasing your dose and not increasing it?

Good for you for advocating for yourself!!

He did not tell me the actual number. Just said the gradient was lower and according to the algorithm my dosage should be reduced from 5 to 2.5. The 5 mg is not making me feel any better even though the gradient is lower. I did have to do the “bearing down” maneuver. My issue is that my obstruction is only significant upon exertion/exercise. My records show this. But my cardiologist is going by the algorithm which provides that if the gradient is a certain level, then the dosage has to be lowered. Yet, he acknowledged that he does not have to follow that protocol. The written responses I got looked like it was straight out of a text book, with no regard for the actual facts. I am very frustrated; I am not an algorithm. So I am going to 2.5mg. What choice do I currently have? I meet with my cardiologist on the 26th. The journey continues; I wish the road was smoother.

It made me very dizzy at first too, so my dr lowered my dose to 25 mg. It helped. 🙂

That is all great news! I haven't signed any papers since I first signed up. I don't know if you read my post from about a month ago that since I am doing so well on 2.5mg they were going to stop it? My dr and I had a fit and he was able to keep me on the 2.5mg. My LVOT went from 75 to 8. It has stayed that way for 2 months but I am still on 2.5 and I intend to stay on it! I don't want to go back to feeling horrible.

I'm sorry that you are still feeling that way! Stay strong and push for what you need! Don't just take things at what they first say. I would think they would bump you up, not down. It seems to be their "protocol" to move all of us down. I love how you addressed to the Camzyos Family! We are! 🙂 Keep us posted...

Push for what you need! My dr found that he didn't have to follow the protocol if it is in my best interest, so he didn't. Plead your case. You are definitely not an algorithm! We are here to cheer you on! 🙂

I really appreciate this group. My doc has one patient on this drug and zero previous experience with it. And much prefers surgical intervention.

It’s so helpful to read about the experience of other patients!! Thank you all.

Hello, I’ve been taken Camzyos since June 7. I had my first echocardiogram on July 6. My ejection fraction is functioning at 65 to 70% which is normal for the heart running and my gradient is at 15 so it’s running well. I just still have all the side effects but I’m coping. My second echocardiogram is coming up in a few weeks to see how we’re working I am taking 5 mg.

Hello all, my name is Joy. I'm so glad I found this group.
When I started Camzyos 5 mg months ago I felt as if I no longer had HOCM. I could even walk up hill a bit and continue walking (mostly flat surfaces) for over an hour. I hadn't achieved this for years. I had and continue to have much more energy than before Camzyos but the HOCM gone feeling did not last. After losing that I asked to move up to 10mg. It has helped me remain productive but I can't predict how I will feel from day to day. Somedays the weakness, pounding, fluttering heart, odd head/body sensation return. I have learned to avoid all but one cup of coffee, large meals, icy drinks, and cannot allow myself to get upset (have had to limit exposure to media). In my case absolutely no alcohol and less bending over (housework, yard) are restrictions that also SEEM to help. I just don't know what to expect day to day. My ECHO numbers are all over the place. In addition to HOCM I have severe mitral valve regurgitation. Camzyos doesn't help with the latter. The good news I want to report is that a wonderful pharmacist, Mark Froelich, with Optum Specialty RX with the Camzyos.rems program, informed me that there is a SSRI, Lexapro, that is NOT contraindicated on Camzyos. I've asked my PCP to verify and prescribe if possible. I am excited that I may be able to control anxiety and depression like I did prior to Camzyos when I was on Prozac. If anyone else has learned that Lexapro is or is not the permitted wile on Camzyos, please respond. Apologies for the length of this.