Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @marigold13 . I can't remember precisely what I have said over the 15'ish months so I hope I don't contradict myself too badly. I do have obstructive HCM, and met the other criteria (age 59 at the time) so I was eligible for Camzyos, which has eliminated every single one of my symptoms. Pre-Camzyos, however, I would get badly winded walking a few blocks on flat ground, climbing a single flight of stairs, or even bending down to tie my shoes. Also, chest pain, dizziness, deafening heart pounding in my ears, fatigue - the works. What I thought was weird at the time, but have since learned that some of the other HCM'ers here had similar experiences, was that if I ate ANYTHING within a couple hours before those non-strenuous activities, the symptoms would be way worse. I would need to stop to rest a couple times on the stairs, or stop and lean on something after half a block of walking (so I wouldn't topple over), or rest for 5 minutes between left shoe and right. I had to plan my morning routine between shower, dressing, teeth, etc so that I wouldn't have to do stairs more than once. And I took to wearing my outside shoes in the house all day. I did find that I could eat something like one granola bar and it wouldn't make things too much worse, but nothing more than that. So I could either eat normally and have a hard time even getting out of the chair, or I could eat only enough to keep hunger pangs at bay, but be able to climb the stairs with only one rest stop. Over the period of about (I think) 12-16 months, I went from about 195 to 165 pounds strictly because I was eating so little. It certainly wasn't due to any exercise! Fast forward to Camzyos, and all of that has changed. I have (unfortunately) gained about 15 pounds of that back again and my only excuse is that I have resumed my role as the poster child for lazy. One more comment is about my use of the word fatigue: For me fatigue did not mean feeling like I needed more sleep - I hardly ever felt that. Rather, it meant feeling like I had done a huge workout (as if!). I had to lie down and not fight to move my arms or legs, each which felt like they were 200 pounds of deadweight. Does any of this sound like you? I hope you can find an effective treatment for your dizziness and all the rest. I remember too well how debilitating that became for me.

Hi @boatsforlife - thank you for your reply. I somewhat identify, but prob not completely. Yes, fatigue to me me is feeling I need to take a rest, if I vacuum I need to rest afterwards. Do dishes/cook, need to rest, I don't do stairs, I can but I avoid, mostly. I rarely go into our basement or upstairs. "Getting ready" is so much 'work' to me. I use slip on mules for shoes or any other slip on shoe. This crept up on me, I had no idea. It is not hereditary, but each echo since 2021 is getting worse. I always wonder if Hashimoto's caused it, but doctor says long term HBP more than likely.
But yeah, after I eat, I get dizzy and fatigued, yes, like I need to rest from doing nothing. It's been rough. I have occasional anxiety and get jittery and palpitations but I think it's also part of my Hashimoto's. It's all kinda intermingled, but I feel like rubbish. I don't plan for anything except drs appts. Some days are better than others but it mostly keeps me home. Well, again, thanks for breaking that down. Yes, I understand it, but not sure if it's exactly the same, but it's close.
It's helpful to read people are getting better using this drug. I'm glad I found this forum.
Thanks for your time : )

Thank you @boatsforllife for very clearly describing your symptoms which are almost identical to mine and which I had for many years. I am 71, also have Hashimoto's hypothyroidism and had blamed my symptoms on that, being a bit overweight and being out of shape etc. My family thought I was just making excuses. For years, I would tell my husband that I couldn't walk after just eating and forget hills, inclines and stairs whether I had eaten or not. What I didn't realize was how much avoidance I was unknowingly and instinctively practicing. I actually watched my mother behave much the same way (she lived to 90 but was very inactive) and now know she likely had the same disease although we'll never be sure. Since diagnosed this year and started on Camzyos in August, my symptoms have lessened but thanks to another posting on this site, I've learned that my gradient really only increases with exertion, so a stress echo was vital in establishing this.

@marigold13 and @mpjg - you are both very welcome. I've found, as you both also seem to have found, that this forum is a great place to talk to people who have similar, but perhaps not identical experiences. Even though it doesn't cure anything, it can sure make it easier to cope somehow. When I was finally diagnosed with oHCM and connected with the forum, there was a validation that I wasn't just making it up or being lazy. Same thing for some of the weirder symptoms - like feeling crappy when I ate - hey, it's not just me! We all need to learn to lean on each other sometimes and to have the grace to let others lean on us when we can offer that kind of support. I wish you both well in dealing with your different situations.

And I will wish you and all the rest of our forum brothers and sisters a happy holiday season. Be healthy, be happy, be safe.

Hi Joyce, sorry for late reply. Your gradient is the rate at which your blood goes out of your left ventricle. Mine got up to 111 on valsalva (movement) it should be around 1 - 10 I believe. The
Obstruction interferes with the outflow of blood. Beta blockers made me feel terrible as I had a low pulse anyway. Since the operation I now have high Blood pressure and have gone into Atrial fibrillation which I didn’t have before, bp is constantly 175/110 yes too high I know and trying to sort it out now. I am 14 weeks out of surgery and energy just coming back and started cardio rehab last week. Keep me posted how are doing? Katie

My gradient on Valsalva is 13mm - at least that is what I see on the stress echo - it seems like we must be using different types of numbers??? Maybe someone on this group could explain that to me? Thanks! Joyce

I am on 15 mg of Camzyos and have had minor side effects. Having a team monitor all medicines you are taking and how you are feeling really makes the process easier. For instance, at one point I began experiencing arrhythmia and the nurse advocate adjusted another medicine I was taking (metoprolol) and instantly I had relief. Camzyos has changed my life. I couldn't walk up a hill without stopping for a breath. Walking up hills isn't daunting for me anymore. I hope you get the care you need and attain great results as I have!