Anyone take new drug Camzyos (mavacamten) for HCM?

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?

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.

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! 🙂

Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the echo showed I was still getting benefit despite not feeling as amazing as I did on 5mg. The starting dose had brought me right back to "normal" (no wonder I felt so great), protocol requires that they lower it (arg!). I've been on the lower dose for 4 weeks now and while I'm doing okay I've started logging my returning HCM issues (light headed, out of breath) as they occur. I've had to curtail the long walks I was taking Charlie on. The doctor will meet with me in 3 weeks to discuss further, he said he's not opposed to going back to 5mg but is being super caution as he is concerned about me having too much and relaxing my heart too much. So I've gone from feeling terrible for the past 2 years, to feeling amazing for a couple months, and now feeling just okay. I'm going to hang in their for a while but now that I've had a taste of normal life again I'm not willing to put up with a sedentary life style long term, at some point I'll give up and just opt for the surgery and a permanent fix.

I have GERD and was switch to Pantoprazole from Esomeprazole. I am trying to minimize acid triggering food (Acid Watchers Diet), I also take Pravastatin and Mounjaro. So, I feel like a walking pharmacy too. 😜

My dr is keeping me on it too. I think he said it is still helping my heart slow down so more blood gets through, but he said we may be able to stop it eventually.

One more thing-my BP has been up lately as well, so my dr. put me on a BP patch called Clonidine and I am on Pantoprazole, for acid reflux from an ulcer which I no longer have-which am going to be weening off. My primary care and the specialty pharmacist said to go ahead and get off of it and see how I do. I want to get off as many meds as I can! I feel like a walking pharmacy! 🙂

Hi jaymaysea-I am on Metroprolol-50 mg/day. It hasn't interfered with how I feel on Camzyos. I had a really bad reaction to Diltiazem, so he put me back on Metropolol. I am hoping you feel better and better each day! I am do happy the dizziness subsided!.:)

@elmore71111, thanks for checking in. Your new journey on Camzyos is just beginning! Thank goodness for all these great members sharing their experiences with each other. Nobody knows like someone who is going through it or has gone through it. It sure seems like a roller coaster ride...up, up, up, up and then BAM! Over the cliff edge! Just having HOCM is stressful. But the added anxiety of a brand new medication with no long term studies, being at the mercy of a drug company's protocol...yes, sounds stressful to me. I hope you sail through the next few weeks with little to no side effects. @kelliw, @hansj, @jaymaysea, @nbs and @starbuck41 have all been on the road before you...each one has a bit different experience, so I hope you can lean on their shared experiences. Mayo Connect is here for you! When do you see your doctor next? Are they easy to get in contact with if you need questions answered or need help?

Congratulations on starting. It took me months to get everything in line to start taking the drug. I don’t know if I would have moved forward without the support and insights of the wonderful, caring people in this support group.
Listen to your body and be vigilant. Reach out to your cardologist if you have symptoms. I started to feel crappy around the end of the second week. Had an echo done (trust but verify) and everything was fine. My cardologist told me I should start to feel better once the drug built up in my system. My heart rate is still up and I am still fatigued; but the lightheadedness is gone. Overall, I am feeling better now.
Praying for you!