Anyone take new drug Camzyos (mavacamten) for HCM?

Good morning! Yay that you have started! I am really hoping you will feel relief quickly! I did! It has been a life changer. I started March 30th. I have my life back! I am so happy you started sharing your journey with all of us. This group has been such a great support! Keep us posted! 🙂

Hi Debra-I don't think my foot and ankle pain is a side effect of Camzyos because it just started a couple of weeks ago. But it is a bummer for sure. I do think I am going to get an x-ray. I may have hurt my foot in aqua class or pickle ball. I have definitely been running around like crazy!! The specialty pharmacist said there isn't any drug interaction with with oral or topical CBD, so I am going to try it on my foot! 🙂

How bizarre! Do you think this is a side effect of Camzyos @kelliw?
I can't wait to hear if anyone else is using CBD oil and taking Camzyos and can't wait to hear what you hear back from the specialty pharmacist!
Do you think you did something to your foot since school started and you are probably running around like your hair is on fire? If it keeps up like this maybe you should see about getting an x-ray?

Hi Camzyos Family! I started back to teaching yesterday, so it's been crazy! I have a question that I will ask the specialty pharmacist tomorrow, but I have been soooo excited to be feeling normal again, doing everything I want to do, and then last week the top of my right foot started really hurting when I walk, especially after sitting for awhile. My ankles are also hurting. My aunt is into herbal, eastern medicine, and made this tincture that has made lots of people feel so much better for different hurts. It is all natural with CBD oil, grapeseed oil, essential oils, menthol crystals and beeswax beads. Can I do CBD oil with Camzyos? Are any of you using it? I got an hour foot and calf massage, which felt great, but didn't last. Would love input... 🙂

Thank you! I’m a patient of UCSF and grateful to read from others who are starting this brand new med.

Absolutely! Camzyos has been a great help for me. My experience was a few days of very mild reaction to the medication- which completely disappeared. Very happy customer here - as they say!

I started Camzyos on 7/26. I now can do more. I have spurts of energy. Hopefully the energy level will stabilize. I do feel better generally.

Get ready to feel much better in about 3-4 days

I am supposed to start it on 8/16/23. Anyone else out there on it with some encouragement/advice for me?

No, but Dr. Owens is brilliant. My cardiologist is Dr. Prabhu - also brilliant. I am only a few months ahead of you being on Camzyos. I think your doctor has more HCM patients involved with camzyos than my doctor and hopefully yours has figured out how to navigate Optum. Best of luck! I hope it works for you.