Anyone take new drug Camzyos (mavacamten) for HCM?

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?

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!! 🙂

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.

Thank you! I will definitely talk to the doctor and the specialty pharmacist before I have any procedures done. 🙂

My doctor is ultra cautious in general. She advised me to wait until I was well settled on Camzyos before having a colonoscopy. Between the prep and the sedation it might be too stressful. My gradient is still very high after two months on the drug. 130. Might be different for you.

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.

Good morning-I am wondering if any of you have had any procedures done, like a colonoscopy, or surgery since you started taking Camzyos? I am wondering about the twilight or regular anesthesia they give and Camzyos.

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!