Anyone take new drug Camzyos (mavacamten) for HCM?

Wonderful to hear you are persevering. I’m 70 this year and having knee surgery next week. I just am hoping the anesthesiologists read about Camzyos and my HCM!!

I am fortunate to live in Raleigh and have access to top notch medical services. My Cardiologist is highly qualified in HCM and has done his research including consulting Cardiologists involved in the Clinical Trials for Camzyos. I feel very comfortable with his recommendations.

You asked what I enjoy. I love being outdoors tending my garden and coaxing the birds to frequent my feeders. I am a prolific knitter and reader. But the thing I like most of all is facilitating workshops on topics such as "Practicing Resilience" and "The Things That Matter Most to me at the End of my Life." This is what truly gives me joy.

Hello there @nccarlee, and a warm welcome to Mayo Connect. You've found a wonderful support group here in the Camzyos group. These people are so terrific in the way they share their own story in the hope that it helps others. You can learn a lot from them.
I like that you are stubborn!! That's a good thing (and bad thing too!). It has helped you push through and not quit. But do be careful and listen to your body as well.
Is your doctor educated in HCM and Camzyos? It is important that they are, and for you to learn as much as you can too. You need to be your own best advocate.
As a very active 86-year old, what are some of the things you do that you enjoy? It's probably a little too soon to notice a big improvement in everything HCM affects, but have you found even one thing is different? Better?

I actually take 75 mg twice a day for mitral valve regurgitation. I was on 50 mg twice a day and not feeling well on 10 mg of Camzyos. When I went up to 75 mg, I felt better instantly.

Stay on it! I have improved greatly on it, and am up to 15 mg because I have severe HCOM. I just had an ECHO and my Valsalva was 19; when I started Camzyos 9 months ago, it was 86! Normal is less than 30. It has changed my breathing and activity level greatly. I am so grateful!

what dose of Metroprol? I take Metroprol Succinate ER 25 mg twice a day.

I started Camzyos three weeks ago after lots of research and discussions with my kids. I am on the smallest dose. 2.5 mg, to start. In three weeks, I am noticing a slight improvement in my shortness of breath and am anxiously awaiting the Cardiogram next week. I am a very active 86-year-old and I am stubborn, so I have not let my HCM symptoms slow me down. It just takes longer to do things!

I am on camzyos now for 5 weeks and my heart pressure gradient went down from 195 mm Hg to 10 mmHg so I feel no pressure on my chest anymore. Side effects at the beginning were a little dizziness, or some kind of heart palpitation that lasted only 2 days and each time was for only a few seconds twice a day. Now no side effects at all. I remain with excellent diet and I take walks every day. Also I keep with positive thoughts so I will not be worried when I go to bed to have any insomnia at all for I know the mind must be strong while having this treatment to help the medicine work better.
I will never leave this great camzyos 5 mg dosage unless the doctor ask me to since I feel a lot better with this medicine and I can walk better and do my activities better. I hope all of the ones who take this medicine feet better like I am feeling now.

I was very nervous to start a new drug, too. I have now been on Camzyos for 9 months. At this point, I am now hesitant to ever get off this new drug. It has made such a difference in the way my heart feels and I function. Just for background; I am a 61 year old teacher. It used to be difficult to actually read out loud to my students. I couldn't read entire long sentences, and now it is no problem. The main difference for me day to day is how my heart feels like its in a regular beating pattern. Feeling your heart race, skip beats, and flutter used to be my norm. Not true now. I did have a time when I felt a little unstable, and a Nurse Practitioner helped change my other meds for better results. He has been a valuable resource. I actually meet with him more than my cardiologist now. I mention this because it is super important to be in contact with the cardiologist if you don't feel well on the medicine.

Hi, I am considered a "severe" HCOM patient as well. My cardiologist is really wanting me to try this medicine too. Can you tell me how long you have been on it? Have you had any side effects? What symptoms did you have before the Camzyos? I am just very nervous to try something new.

Thank you for your help.