← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@karukgirl

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?

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Replies to "Hello and welcome to Mayo Connect @montanamoon, I'm glad you found this site. The Camzyos group..."

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!