Anyone take new drug Camzyos (mavacamten) for HCM?

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?

Hi there @gunnerman55, while we wait the hear from those who are taking Camzyos to answer your question, let me welcome you to Mayo Connect. It sure seems like PVCs are common to all of those who suffer with HOCM. I know we are all different, but we all seem to have a lot in common too. I had terrible PVCs and SVT before I had my septal myectomy. They are pretty much gone now, but I still get in the fast lane, and go well over the speed limit, even three years after surgery. The PVCs are gone with surgery. There are many stories here on Mayo Connect, and I hope you have a chance to read some of the stories from others just like you. When were you diagnosed with HOCM? Have you started taking Camzyos yet or are you still waiting to start it?

Hello everyone. My doctor just prescribed mavacamden and I’m looking forward to some relief. Just wondering does anyone have pvc’s as well and does mavacamden relieve or reduce any pvc’s? Thanks.

Hello all, my name is Joy. I'm so glad I found this group.
When I started Camzyos 5 mg months ago I felt as if I no longer had HOCM. I could even walk up hill a bit and continue walking (mostly flat surfaces) for over an hour. I hadn't achieved this for years. I had and continue to have much more energy than before Camzyos but the HOCM gone feeling did not last. After losing that I asked to move up to 10mg. It has helped me remain productive but I can't predict how I will feel from day to day. Somedays the weakness, pounding, fluttering heart, odd head/body sensation return. I have learned to avoid all but one cup of coffee, large meals, icy drinks, and cannot allow myself to get upset (have had to limit exposure to media). In my case absolutely no alcohol and less bending over (housework, yard) are restrictions that also SEEM to help. I just don't know what to expect day to day. My ECHO numbers are all over the place. In addition to HOCM I have severe mitral valve regurgitation. Camzyos doesn't help with the latter. The good news I want to report is that a wonderful pharmacist, Mark Froelich, with Optum Specialty RX with the Camzyos.rems program, informed me that there is a SSRI, Lexapro, that is NOT contraindicated on Camzyos. I've asked my PCP to verify and prescribe if possible. I am excited that I may be able to control anxiety and depression like I did prior to Camzyos when I was on Prozac. If anyone else has learned that Lexapro is or is not the permitted wile on Camzyos, please respond. Apologies for the length of this.

I started Camzyos on June 27. I've had dizziness that's improved but still there. And probably the symptom that bothers the most is a racing heart, almost like vibration. An anxiety-type feeling. It started right away, seem to get better, then worse again. I had Echo a week ago and they called me and said they were going to give me the 2.5mg dose. I called them yesterday about the racing heart and they said to stop the 5mg for a week and then start the 2.5. I stopped last night and the racing heart feeling is better. I guess we'll see what happens when I start the 2.5mg in a week. My heart rate and blood pressure were fine throughout.