Anyone take new drug Camzyos (mavacamten) for HCM?

I am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞

I am sorry to hear you are feeling unwell, @whidbey.
@nbs has good advice for you, and I would also suggest you let your cardiologist know what is going on and that you feel crummy.
Hopefully other Camzyos members can chime in with their experience and share and compare. I have learned so much from them and can only imagine how you must be feeling...a month in and not doing so great. You just began taking it recently, like last month, correct?

Definitely let your doctor's office know how you are feeling. How are you not feeling well? There might be others who have had the same reaction. My only side effect had been feeling very tired but once my dose was lowered that effect disappeared.

I am not feeling well on Camzyos and am really curious about your experience!

Thanks so much.

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.