Mavachemten

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Welcome to Mayo Clinic Connect @mustang68. Do you have a 1968 Mustang?
I posted the link above and encourage you to take a look. There are many HCM/HOCM folks on here, and a whole new group, with lots of experience, have been posting since the approval of Camzyos (Mavacamten).
Just like you, I was misdiagnosed for years with various heart conditions, and at 62 finally found out what I really had. HOCM (hypertrophic obstructive cardiomyopathy). And not only that, the day I learned I had it I was also told I needed open heart surgery! It was an awful lot to take in.
Hopefully, one of the Camzyos users will be able to answer your questions. I do know that every person is unique and no two are alike, so everyone will react differently. The Camzyos group is a wonderful place to spend some time reading, I think you will find some do notice changes right away, and others it takes longer. Then there are those who had a terrible time with it and had to go off. It is not for everyone! It is really important your cardiologist is up to date on this condition and this drug, and you should also learn as much as you can about it. You really need to be your own best advocate. You already know this as you were misdiagnosed for years too. Is your cardiologist familiar with Camzyos and HCM? Do you have an echo scheduled soon?

Thank you so much for your reply and advise. Yes! I do have a ‘68 Mustang fastback. 🙂 i am so sorry for the ordeal you had to go through. You are clearly a brave and resilient person. I am a coward.
It was Dentist’s assistant who had a septal myectony who encouraged me to investigate if i had HCM. I started going to a cardiologist when I was 40 because my Dad died of HF my mom died of CAD (heart attack). My septum kept getting thicker year by year. “You have high blood pressure”. This feb ‘24 I wound up in the hospital after taking a heavy direrectic. Fainted. My gradient was 50 at the hospital. But my resting gradient has been all over the place since then. Last eco was 31 at rest. The one before that was 13. I’ve been to two NYC HCM programs. When my testing gradient was 13 they said I had the non-obstructive kind. When it was 30-50 they said I had the obstructive kind. I do have a septal budge with SAM. Initially because I had a 13 gradient they said I wasn’t eligible for Mavachemten. Then when it was 31 another hospital told me I was. Anyway, on Mavacamten for 10 days now. my first eco after this Mavacamten trial is on August 2nd. By the way, even with a 13 gradient I am symptomatic. Fatigue. Sorry for rambling. I’m just hoping this drug works . By the way, I have seen 11 cardiologists this past year. Amazing the difference of opinions. Two are head of HCM programs at top hospitals. It may be that the diastolic dysfunction creates my greatest symptoms- fatigue and very tired most of the time. No SOB. But since Jan I have avoided social settings etc to conserve energy. I am so glad I have nice people like you I can share my experience with. To look at me the general public would see nothing wrong- but the weakness and tiredness can stop me in my tracks. Honestly I have to keep reminding myself this is a marathon and not a sprint. It’s disappointing I can’t work on my car or house like I did only a year ago. My symptoms seemed to come on suddenly last August.

Hi, I’m Teri. I am 63 and just found to have HOCM with SAM with gradient at rest 214, very scary. I am of course going to Cleveland clinic in March unless I can get in sooner. I also have been misdiagnosed since with Mitral valve prolapse since 2012. I feel very cheated. I am going to the heart failure clinic tomorrow to start mavacamten, not sure how I feel about it but I have to do something until I see Cleveland, I’m sure I will need surgery. Hoping for the best for everyone on here.

I'm a patient at Mayo in Rochester and had alcohol septal ablation surgery. I hear that Cleveland is a very good Clinic so best to you. It is very common to be misdiagnosed with HOCM as I was as well that is why I demanded a referral to Mayo. Hope you get to Cleveland soon to avoid issues.
Take Care
Jim

Teri, I have obstructed HCM and misdiagnosed with a mitral valve prolapse for 9 years. I was referred to Christ Hospital in Cincinnati and the HCM team has been great. They are a COE and I have been on Camzyos 5 mg since May 2025 and had great results. I am an active 64 year old and can run and bicycle again. I still have some minor shortness of breath at times but mitral valve issues are minimal now where they were in the severe range before. I was also referred to Cleveland Clinic but Christ Hospital was closer to my home in Kentucky. Wishing you the best of luck.

Hi @mustang68 !
I’m 41 and have been on Camzyos since May 2025. First three months on 5mg and now on 10mg. I didn’t see much difference on the 5mg dose, but after I started taking the 10mg I started seeing amazing changes after just a week. No shortness of breath after meals, walking or showering, which was huge for me. Now after 4 moths on the 10mg dose I can say I am almost back to “my old self”. My obstruction is gone, I still have HCM of course, but I am almost without symptoms now. No palpitations, minor fatigue and as I said no shortness of breath. Hang in there, it takes some time or maybe they will have to increase your dose.

@tamelton I am in Louisville, Cincy is closer but my boss and friend is a national nephrologist and did some school and work there and recommended Cleveland, I just need to get in sooner, this is cUsing me to feel so bad all the time, digestive issues, fatigue, can’t do housework, ugh. So glad to hear the Camzyos has worked for you. I am praying for some relief.

Terri, I live in Versailles just outside of Lexington and see Dr. Mazur at Christ Hospital. My cardiologist has high respect for and has referred many patients to Christ Hospital HCM team. If you need in the future, here is a link to their website. https://www.thechristhospital.com/services/heart/specialized-care-and-treatment/hypertrophic-cardiomyopathy-hcm

@jachrist they scheduled me for March20, and won’t change it, ugh.

@tamelton thank you so much❤️