Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @maryelizabethp,

Yes, I saw notes here of patients who after surgery they had to take Camzyos post surgery.

I hope all works well for you.

Hello @maryelizabethp, and welcome to Mayo Connect!
I'm so glad you found this site and made your first post. I have some questions for you...
You mention you had 'the surgery' at Mayo in Rochester, do you mean a septal myectomy?
Have you been seen by an HCM expert recently?
Have you tried to contact the cardiology department at Mayo through the patient portal?
It sounds like you really need to get an opinion from an HCM expert and find out if these issues are due to hypertrophic cardiomyopathy, if these are from the medications you are taking, or just what is causing your worsening symptoms. It must be frustrating!
Are you close to Mayo Rochester? Have you tried to contact using the patient portal?

Hello all my compadres. I have severe OHCM and had the surgery in 2014 at Rochester MAYO. My question is this: Has anyone taken Camzyos post surgery? I am on more prescription drugs than I thought possible, but with aging my symptoms are worsening. The fatigue is so so frustrating.

I would be glad for any information regarding.

Just an FYI, I made it through major back surgery at the end of January with no problems.

Haven't posted here for a while but I constantly lurk, reading all of the experiences, and feeling just sick for those who haven't had success with Camzyos, after so much hope and promise. As I've previously noted, I'm one of the lucky ones - 100% symptom-free with no negative side effects. Update - started 5mg Camzyos in September, and it took less than 2 weeks to become symptom-free. After the 12 week echo I got bumped to 10mg. I didn't notice any change between 5mg and 10mg but my cardiologist did and he is super-pleased with the current state. My blood pressure did increase a little bit when starting at 5mg and then again when moving to 10mg. He put me on Losartan (in addition to my previous Tiazac) and the numbers are coming down. I still harbour that inner fear that it will suddenly stop working, but for now, I'm living my best life!

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!