Anyone take new drug Camzyos (mavacamten) for HCM?

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!

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?

Have to agree completely with @susanml. Also in Canada. I think (but not 100% sure) I was my cardiologist's first Camzyos patient. If not, certainly one of his first. He seemed to have pretty close contact with BMS, especially in (my) early days. And the BMS "program" - not sure how the US and Canadian programs compare, but I have been astounded at how quickly and thoroughly all of my questions were addressed through my nurse-case-manager. Drug interactions, food interactions, ... any concerns at all. Right from the start, they dealt with my insurance company, my cardiologist, the dispensing pharmacy. Very much a case of "leave it with me, that's why I'm here." The support has been wonderful.

Thank you so much for your response! That is great news!

Yes I do mean Verapamil.

Ive been on Camzyos for 5 months.
I had an ablation for AFib which required anesthesia with no negative results.
I’m almost 78 years old.
Goood luck with your surgery. I hope it’s successful

I’m in Canada and BMS seems to participate with the cardiologist in monitoring the prescription of camzyos. The cardiologist offered it to me last November and he has monitored me consistently since then. Ofttimes while sitting in his office he’ll refer to the BMS protocol for this drug. I feel like both of us have ample support. I’m impressed.

Do you mean Verapamil? It's a calcium blocker.

Has anyone had surgery since being on Camzyos? I am scheduled for foot surgery in July and can't find any information about anesthesia and Camzyos. I even called BMS and talked to a nurse there and she couldn't find any information on people having surgery while on Camzyos. There has to be someone who has had surgery? I am going to a cardiac clearance appointment Monday and will be having the surgery at the hospital, not the orthopedic institute as a precaution.

Good morning-I went to Steamboat Springs. Colorado, last summer and didn't have any problems. It was about 6900-8000 feet. I was there for a week. 🙂