Anyone take new drug Camzyos (mavacamten) for HCM?

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!

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

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.

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

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.

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.

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, I am scheduled to receive my first 35 day supply today. So I will be starting probably Saturday. Yes, there is still some reluctance/procrastination; I want to get some blood work done before I start to give me a baseline.

I have really been afraid to take the drug. But, this group has been a godsend. It has provided first hand, unbiased information, and given me the comfort level to move forward. I hope it does the same for you. The drug is not for everyone. But, I pray it works for us.

Hello Mary/ @sunndyduke2, Welcome to Mayo Clinic Connect! You will be comforted by knowing there are many others, just like you, who have come here to find and share information about HCM, HOCM, and the new drug Camzyos. I had open heart surgery, so I have no experience with Camzyos. There is a whole new group here taking this drug, and they have shared their experiences with each other, and those who may be reading their post.
@nbs, @lgerding, and @jaymaysea are each correct in their encouragement and responses...it takes courage to try something new, without knowing what the results may be. Every drug has side effects that would scare folks into not even trying...so you have already made the brave decision to at least give it a shot. Good for you!
As mentioned, it is not for everyone, and I would tell you not to fear open heart surgery should you end up having to go that pathway. Anyone would fear it, of course, but the risks vs the benefits far out weigh not having it in the end. I hope you will come back and share your experiences with the Camzyos group. I think the one thing we all have in common is the wonderful feeling of getting your life back. HOCM takes away so much of what we can do, and when you get it back you realize how bad you were before surgery or Camzyos.
You mention you just started Camzyos today, when do you follow up with your cardiologist next? Is your cardiologist specialized in treating HOCM?

Today I had to clean the house this morning. I took day to my heart rate heart rates been up over 100 115 when I get home I feel like right now it’s still at 100 101 102. I feel like weird, not spinning in the head just some kind of blow today. My backs been killing me because I did something to my SI joint pulled a muscle or something. It’s been hard for me to sleep the last couple days, but I’m doing OK I guess