Anyone take new drug Camzyos (mavacamten) for HCM?

I have been on it for a little over 12 weeks. Be patient it took some time to see any results. Around 10 weeks for any significant change. My LVOT gradient went from 121 mmHg down to 3. Quite amazing. Let's hope it stays that way. Good luck and hang in there

Hi Mary,
We are all new to Camzyos and the unknown is unnerving. I hope it works for you. Speaking for myself (three weeks in) there have been no side effects and I have never felt this well in years. Although my obstruction was becoming debilitating, I found out that I would not qualify for heart surgery because the thickness of my septum wasn't thick enough to make surgery safe. So I wish the best for you and give it a bit of time. I think this site is comforting because we are a small group all in the same boat.

Hello, my name is Mary. I just started my camzyos today was very nervous to start it because of the side effects. It are on the side effects but I have hyperopic cardiomyopathy found out a couple years ago. None of the medication has seem to work, so this is my last straw. If this doesn’t work, then I’ll have to have the open heart surgery.

Good thing I’m not a doctor, I got that backwards! Grapefruit can actually INCREASE the effect of Camzyos as well as some statins.

Hi Kelli, thanks for the tip! I had no idea that had grapefruit in it.
My understanding of it is that grapefruit can reduce the efficacy of the drug. It does the same to statins (cholesterol drugs), so at most is like missing a dose. Disclaimer: I’m not a doctor, but I’ve seen all episodes of House. Lol.

We have many parks and forest trails up here for Charlie and I to explore up here in Canada.
Since my walks are getting longer I think I’m now just running into my lack of fitness due to being sedentary for a long time. I’ll just do what I can and try not to over do it while I build back my fitness (and hopefully lose weight at the same time). My next echo is June 23rd

Good morning-Something happened last night that I wanted to share so that it doesn't happen to any of you. My daughter is home visiting and decided to make a special cocktail for us. It had Empress 1908 gin in it, which is a beautiful purple colored gin. It is organic and is colored from pea blossoms. It has other things in but the problem came when we discovered it has grapefruit peel extract in it. I had about 3-4 sips when we discovered this. I decided to call the 24/7 line to ask if this was ok. The pharmacist told me that grapefruit peel is not OK, that it has the harmful enzymes in it and to watch myself for the next couple of hours and if necessary, go to ER. Luckily nothing happened and I am fine, but will be much more careful from here on out. I have been careful about grapefruit juice, but learned a new lesson. 🙂 Bummer because the cocktail was yummy!

My echo is scheduled for June 19th. So far I feel fine.

Charlie is adorable!!! Gorgeous scenery too...glad to hear you are doing well @hansj. That was scary sounding when you ran out of meds for five days! You and @kelliw are on the same timeline it sounds like. I'm glad you can help each other by sharing information. How long after the lower dose, will you have your next echo?

Yes, it was a mix up in communication but my doc has it all figured out now.
My pup Charlie is loving all these walks