Anyone take new drug Camzyos (mavacamten) for HCM?

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.

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.

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.

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!

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?

Hi @quinn, I'm glad you found this group too. I see that you have posted in the Hypertrophic Cardiomyopathy group before. It sounds like you have had to deal with this unpleasant condition for quite some time now. You mention you have been on Camzyos now for five months with some positive benefits, and then also not so much in other areas. I had to have open heart surgery for my HOCM, so I can't speak to the benefits or risks of this new drug, but this group, the Camzyos group? They are champions! They share their stories, share their ups and downs, share the negative as well as the positives of taking this drug. I hope you are able to read all the wonderful posts these brave people have shared for the benefit of others in order to help. I mentioned I had HOCM and open heart surgery. I also had a MVP/mitral valve prolapse with regurgitation as well as SVTs, PVCs. My doctor said my murmur was a 5...you could almost hear it just standing next to me. After surgery, the MVP and regurgitation practically disappeared. Gone. Just like that. Since we are all different and respond different to surgery, medication or whatever, I am just sharing that mine went away. Today it is very tiny, and pretty much inconsequential per the cardiologist. HOCM causes so many issues within our heart system. I know you were asking about taking something to control the anxiety/depresion you experience, and I guess my response to you is that perhaps, as the Camzyos continues to work, some of those icky anxiety feelings we get with HOCM will start to decrease? Hopefully a member who has experience with that aspect will chime in. In the meantime, I'm so glad you found this group. When will you find out if your doctor will be able to prescribe Lexapro?

I was nervous about going down to the 2.5, because I felt really good on the 5 mg. , but I feel great on the lower dose. I occasionally get a racing heart for a few seconds too and have been a little nervous about it. I had some dizziness on 5 mg. but haven't had any on 2.5. I hope you feel good on 2.5 too!! 🙂

Hey Debra, I was diagnosed about a year and a half ago. I was first given beta blockers , then beta blockers and calcium channel blockers, then I was given double the dose of both, those caused my heart rate to dip into the 40's while sleeping. Then I was given disopyramide and that felt good for a few days before again my heart rate dipped into the 40's along with feeling very weak and blurred vision. All along I was suffering from PVC's. Now my dr just prescribed mavacamden and I'm waiting for insurance to approve and for me to get the meds. My symptoms are always at rest. I can run up some stairs fine, but if im laying down at night I lose my breath and get nasty PVC's all night. It's terrifying and I feel hopeless sometimes. Just wondering if I can get rid of this arrhythmia with mavacamden. I haven't read about this specific issue on these forums. Do you ever get chest pain after the surgery? are you on any meds now or have you been able to get off everything? what was your ejection fraction prior to surgury? Now?