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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (736)Comment receiving replies
I just started Camzyos. It took 3 months and a lot of stress to get it.
Now I feel like I’m on my own.
I had to ask for an echo. I had to tell my doc Carvedilol has a moderate interaction. I decided to take half. I’m also on Losartan which in one search showed an interaction but in another it did not. I haven’t received the results from my echo, it’s been a week…the info was very clear to get an echo before beginning..
Do I need to find another cardiologist?
Replies to "I just started Camzyos. It took 3 months and a lot of stress to get it...."
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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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.