Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @captainterry,
I would encourage you to read over other HCMers posts to see if anyone has any advice. You can find the bulk of our members here: https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
I know @gwenm has mentioned this medication in one of her posts.

I know that physicians have to be enrolled in the CAMZYOS REMS program in order to write prescriptions for you. One physician wrote in Every Day Health, “We’re very excited for our patients about this addition to the toolbox for management of obstructive HCM. It won’t be for everyone — nothing ever is — but it is a very welcome tool,” says Sara Saberi, MD, a cardiologist and assistant professor of internal medicine at the University of Michigan Health Frankel Cardiovascular Center in Ann Arbor. https://www.everydayhealth.com/heart-health/fda-approves-camzyos-for-the-treatment-of-obstructive-hypertrophic-cardiomyopathy/
That might be a good place to start.
Have you talked to your doctor about the possibility of enrolling so they can help you?

Hello, just had s meeting with my cardiologist this morning about this new med. He is sending me to Mayo to be evaluated for this med.

@hazmat1, I'll be interested to hear what you learn after your evaluation and if you'll be starting on Camzyos (mavacamten).

Yes, I will post the final verdict 🙂

I am trying to find out the codes for my Mayo scheduled tests this July in Rochester and their costs to have an estimate. Tried to leave phone messages and sent several Emails. Maybe I am using wrong contacts. Would you be able to send me in the right direction? Thank you so much!

@hazmat1, I suggest contacting Patient Account Services in Billing & Insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

Thank you so much! They provided me all the information I needed.

Yes, I’m taking it. My co-pay is $35/30 days. In my third month with this Med. At this point, I haven’t seen any changes yet.

I have just joined this forum. I am Canadian with HCM and Camzyos is being recommended for me by my Cardiologist here. I have just been contacted with the pharmacy in my city (Victoria) that now handles this medication. Needless to say I am quite unsure about Camzyos, noting that heart failure is one of the potential side effects! I am researching information online to educate and reassure myself, found this excellent forum and thought it a good place to pose this question to others. I am 71 yrs old and was diagnosed about 5 years ago after a number of afib incidences. Currently on blood thinners, beta blockers and a Rythmodan (disopyramide), which I gather will be unnecessary if the Camzyos works for me. I will be having the necessary ECGs to monitor. Thanks for reading this long message!

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!