Anyone take new drug Camzyos (mavacamten) for HCM?

HOCM is so weird! I hear what you are saying...how strange you can run up stairs and be fine but at night or rest, BAM! I had good days when I thought I was fine, and then other days I felt like I was going to pass out, or had chest pain just bending over to put my shoes on.
I was on probably five different beta/calcium channel blockers before and after surgery. They didn't like me, and I didn't like them and last year, working through the patient portal at Mayo, Dr. Ommen told me to just stop. So I did, and I am fine now. I worried about going off them, because after surgery my heart rate was always high. Resting at 90. But I think the healing part, which takes awhile, finally settled things down to where I could go off them. I still tend to run high, and the heart rate goes up pretty fast...but I'll take that and be fine as long as I don't have to take meds. I'm on a baby aspirin for life. That's a nothing burger to me.
I remember before surgery my heart would do so wild stuff at night. The bed shook because it was working so hard. I could feel the pauses (which scares you) the crazy rhythm.
That was a lot of words (I'm known for using a lot of words) but for me...the surgery made all that go away. No more chest pain. No more meds. My EF resting was around 82? I can't remember. But during stress, like what they did in surgery, it was 253. Dr. Dearani said I had a severe case of HOCM...which was so oddly comforting to know, because I didn't look that bad on paper. I knew how I felt though. I was afraid I was going to die sometimes. I was very athletic and active prior to HOCM robbing me of my life. I didn't want to die in my sleep or out running the trails.
I can't speak to the effects of Camzyos, so hopefully one of our amazing HCM/Camzyos people can answer? Do you know how long before you will be approved? Is your doctor familiar with HOCM and Camzyos? How is your overall health besides the HCOM?

I'm scheduled for another echo in 5 weeks just to confirm all is well. My doctor says that while I was his second patient on this drug, he now has many and feels comfortable overriding protocol where it makes sense.
I completely understand the need for the protocol as they try to find the lowest level required to eliminate HCM symptoms for each individual while not decreasing heart pumping too much.
Did anyone else ever play that video game "lunar lander" back in the early 80's? the strategy feels a lot like that LOL!

I've been delightrd with camzyos for my condition. I have a genetic heart murmur because a lower part of my heart is hardened. At age 78 I had endrometrius cancer, had a robotic hysterectomy followed with 6 months of chemo treatments. After that I had no energy and couldn't walk without losing breath. Saw a heart Dr who said after testing that I needed camzyos. I started at 5 mg and saw immediate improvement. March 5 after an ultrasound showing better numbers. I was increased to 10 mg. It's WONDERFUL FOR ME. AT 81 I AM FEELING GREAT and hope to have some more quality years.
Know it doesn't have same effect on all bur for me I'm very grateful.

Hi Camzyos Family, I have been on Camzyos now for six week. I am still not really feeling better; still have shortness of breath and fatigue. How long did it take for the positive effects to kick in?

My Dr. told me he was “required” to lower my dosage from 5mg to 2.5mg. based on the results of my echo. So I guess that I am an algorithm. I am very disappointed to go to the lower dosage since I wasn’t feeling better at the higher dosage. The Dr. said it takes a while for the drug to build up in you system. 😣

I have a meeting with him on Wednesday and my next echo is 8/7th. Will report back.

Hi All, it's been a week since I got back up to the 5mg dose and I'm happy to report that I feel really good again! I did a bunch of yard work yesterday without issue and haven't felt out of breath or light headed.

Thank you for sharing @jenywilliams! What a wonderful testimony for Camzyos! You've have gone through quite a journey...congenital heart disease, endometrial cancer, surgery, chemo and terrible fatigue and barely able to walk.
And here you are, 81 years young, feeling great and grateful and looking forward to more quality years! What a wonderful attitude.
I'm curious about Camzyos being used for something other than Hypertrophic Cardiomyopathy. You mention you have a "genetic heart murmur" because your lower heart is "hardened." Do you know exactly what you were diagnosed with?

Good morning! I had my follow up yesterday and my dr. wasn't happy with part of the echo, so he came in and had the technician do part of it again, so he could guide him and see what he wanted to see. I am so continually impressed with my doctor. He said everything looks good-my LVOT was 75 at the beginning, went down to 8 for the 2 months I was at 5mg and is now at 19 on the 2.5mg. We are staying at 2.5mg because I feel good and my EF is strong. He is thrilled at the activities I am doing and that I have lost 10 pounds! Instead of seeing me in 3 months, he wants to see me in 6 weeks to check on everything. I am so very thankful to have my life back. I can't say it enough. Have a great day. 🙂

HCM. FROM AN EET procedure, my heart Dr determined the hardness of part of my heart was causing poor circulation and camzyos has helped.