Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Hans-I was not feeling as well either, on the 2.5 vs. the 5 and have now turned a corner. I am feeling really good. I have now been on the 2.5 for 4 weeks as well. My dr said the same thing about the worry about my heart being relaxed and weakened. It is good to know they. can override the protocol if they feel it is necessary and safe. I agree, now that I have experienced feeling well again and being able to resume all of the activities I want to do, I am not going to put up with being taken off of this! 🙂

Has anyone been given a higher dose of Camzyos after two months or longer? I just had my second echocardiogram after 7 weeks on 5mg Camzyos. Although my symptoms are better - almost no angina, more energy - the LVOT gradient is still high. My doctor said she was disappointed and asked if I would consider surgery. I said no, I want to give this drug more time, and consider a higher dose. Can anyone share a similar experience? Thanks for any experience you can share.

Thank you so much for the encouragement! When you started feeling bad at the end of the 2nd week, how long did it take for those symptoms to subside? I am currently on day 4 and my husband planned a two week vacation with me at the end of next week, which would put me near the end of my second week. We’re staying fairly close because I’m too nervous to be too far away from my drs, but I’m wondering if I should just tell him ‘let’s have a staycation’ lol. And what kind of symptoms did you have while you were feeling bad?

Good Morning @elmore71111, I was lightheaded (but I did not feel faint), more fatigued than usual, and experienced more shortness of breath upon exertion. The combination made me feel generally crappy. The lightheadedness was intermittent. It lasted about a week, starting on a Saturday evening. My cardiologist sent me for an echo on the following Friday; so, about a week after the start of my symptoms. To be on the safe side I didn’t drive during that week. Now, I feel better; but, I am still fatigued. No lightheadedness and the shortness of breath is better. I have two flights of stairs in my house - 26 stairs in total. Navigating the stairs brings on the shortness of breath.

Everyone is different. So you may not have any symptoms. Mindset is so important to your health. So stay positive, enjoy life, because tomorrow is not promised.

Thank you so much for your encouragement!! You are so right about a positive mindset, I have learned through this journey that getting older is not a ‘right’, kind of like I used to view it… it is a luxury not afforded to many and I always keep that in mind and try to relish every moment because as you said tomorrow is not promised.

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

Hello @rover27, while we wait for other members to chime in, let me welcome you to Mayo Connect! There is a lot of information on this site, so I hope you will take some time to poke around and learn as much as you can. Other members taking Camzyos will be able to respond better than I can, as I had open heart surgery for my HOCM. It sounds like it really works for some people, and others have had issues. Is your cardiologist experienced in treating HOCM? That's really important.

Initially I thought I felt better with the 5mg dose but now entering my fourth week taking 2.5mg I feel great. I am able to walk a few miles even in the heat (early in the morning). What I am now not feeling which I did feel with the 5mg dose is sudden fatigue to the point of quickly nodding off. For me, it seems to take about 3 weeks for the effects of each dose to be consistent. My next echo is in a week. I am hoping my LVOT is at 20 or above or there will be a lot of discussing on my part. Since this drug isn't a cure but a prevention, I would assume that being taken off this drug (if my LVOT is below 20) would put me back to where I was before Camzyos.

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

Good morning-They wanted to take me off for a month because my LVOT is still at 8, from 75! But my doctor fought it for me and they agreed that the doctor can override the protocol, so if that happens, and you want to stay on, now you know it can be done. 🙂 I did not want to go backwards either!