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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (807)Comment receiving replies
Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed some possible positive effects after the first couple days then a bit of a wobble around days 10-12, and since that time it has been the most amazingly smooth sailing I could have hoped for. Sometimes I forget and start walking a little too briskly and feel some minor effects - just exactly what one might expect from being 15 years without any real kind of exercise. I have no idea what my numbers are from my pre-Camzyos echo and my 4 week echo, and I'm intentionally not finding out. I know how easily I can psych myself out trying to understand all the stuff in anything like an echo report - especially with my medical degree from the School of Google. My cardiologist has been asking how I am feeling, and is replying with positive comments and has not changed my dosage yet, so I am content to let him do his job at this point. Saw my family doctor last week and told her how great I am feeling. She said it was probably too early to see much in the numbers yet, and then it was fun watching her jaw hit the floor when she compared the 2 echos. So I'm just riding a high for now.
Replies to "Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed..."
Update after the 12 week echo... I've been on 5mg since the start and had only good results. Probably one day in 6 or 8 weeks I suddenly feel the old symptoms again but they are not nearly as severe, they clear up in seconds rather than hours, and they are completely gone again by the next day. Just had an MRI which was inconclusive, and my 12 week echo. My cardiologist seems really happy with the way the echo reports read but he wants to increase my Camzyos from 5mg to 10mg. Considering that the 5mg dose basically made everything go away completely, I can't imagine what 10mg would do but I'm more than happy to let him do his thing when it's having such a positive impact. And reference our conversation of a couple months ago @karukgirl, we just came off a week of -35F. Just why I insist on living in a place where the air hurts my face is a question I will eventually need to consider. Happy 2024 everyone.
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@boatsforlife that is amazing news!! I love how you said it was fun watching your doctors reaction after thinking it was too early to show any changes and then she compared the echo!
And how great to be able to start getting out and start exercising after not being able to for 15 years. Walking is so good for you and I hope you continue getting great results. Thanks for updating the group!