Anyone take new drug Camzyos (mavacamten) for HCM?

Hello and welcome to Mayo Connect @montanamoon, I'm glad you found this site.
The Camzyos group is a very supporting and helpful group. While I was not a candidate for Camzyos (I had a septal myectomy at Mayo) a lot of folks here have had good results and others not so good and they could no longer tolerate it.
Reading your post makes me concerned that you may need a second opinion. Do you live in an area that you can see another cardiologist?
It's super important to find a doctor who is skilled at treating HCM. This is your life! You need to be your own best advocate.
I was almost embarrassed to ask my local cardiologist for an outside opinion. I live in a smallish town far away from any COEs (Center of Excellence) but I knew I had to be proactive. He had misdiagnosed me at least four times and I did not feel confident I was in the right place. Turns out, my instincts were right.
His last diagnosis before I finally got to Mayo was SAM, subaortic membrane.
It is super rare and always needs surgery he told me.
It's very severe and I needed open heart surgery right away he said.
He can send me to our local heart surgeon right away he said.
Thank the Lord I didn't go there. I would have had open heart surgery for something I didn't even have.
The point I am trying to make is listen to your instincts. They are telling you to seek another opinion. Do it! Number one, it certainly can't hurt you, and number two you may find you need even a third opinion.
You can self refer to Mayo Clinic if you choose, or your doctor can refer you as well.
https://mayocl.in/1mtmR63
Waiting a week for results from your echo after three months of Camzyos sounds casual, and I think you should rattle a few cages. Are you near a COE?

Thank you so much for your reply. He finally called me with the results of my ECHO.
He said it looked better than the previous one I had done in Montana. I left a very good COE to make this move.
I was on Camzyos 6 days before this ECHO…. I don’t feel it works that fast. He nor the staff knew what/how to set me up with REMS correctly as they only had on person on Camzyos before he prescribed it.
He is in a clinic with other Cardiologists.
I will check for a COE!
Thanks again you have helped!

Thank you so much for your reply. He finally called me with the results of my ECHO.
He said it looked better than the previous one I had done in Montana. I left a very good COE to make this move.
I was on Camzyos 6 days before this ECHO…. I don’t feel it works that fast. He nor the staff knew what/how to set me up with REMS correctly as they only had on person on Camzyos before he prescribed it.
He is in a clinic with other Cardiologists.
I will check for a COE!
Thanks again you have helped!

Hi @montanamoon and welcome. I'll just chime in here to tell you that I had progressively work oHCM symptoms over about 17 years. To the point where I would have to take 2 breaks going up a single flight of stairs, couldn't bend over to tie my shoes without palitations, dizziness, chest pain,..... After 2 (yes, two) days on Camzyos I was noticing "hey, that should have hurt a lot more... but after just 2 days, it must be in my head." By day 12, I had NO symptoms whatsoever. So for the lucky some of us it works hard and FAST. Maybe (hopefully) you are one of us. Keep the faith!

Mayo Clinic Rochester is the world's leader in HCM/HOCM and the treatment for it. It may mean a plane trip, but you are worth it! I'm glad to hear your echo showed improvement, but I would still encourage you to be on the lookout and watchful over your own health...you know you better than anyone else 🙂

I needed to hear this! Thank you.
I will share with my cardiologist.
Happy you’re having good results. The hope helps tremendously.

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!

I too am delighted with less symptoms after taking Camzyos for 1 1/2 months. After less than a week, initially, I had noticeable improvement.

Hi jess. I am 69 years old. I am pretty sure this was hereditary. I did take genetic testing, To see if we could pinpoint the gene. But they could not pinpoint it. I have two sons one suns bent tested negative for it. My other son has not gone yet. Do you know if yours was genetic?