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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (736)Comment receiving replies
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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I am not sure why they would increase your dose if you are doing so well on just 5 mg of Camzyos. I responded very little to 5 mg, but when they bumped me up to 10 mg., I had an amazing response to the increase and feel better than I have in years! I hope you have great results as well! joy!
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@boatsforlife, I had to read twice... -35... as in 'minus' 35.
That does not even compute in my brain! And we were all complaining how cold it was here last week, our low was 30, our high was 43. Brrr! But yesterday, after lots of rain, some slushy stuff and closed Interstate over the weekend, it was a glorious 62, sunny and beautiful clear day! We are total flatlanders! Can't drive in the snow, a few flakes and we all lose our minds!
I am so glad to hear about your results. I would be confused too as to why your dose would be 'tweaked' when all is well, but I didn't go to medical school, or even stay at a Holiday Inn Express. I hope you keep us updated on your results with the new higher dosage. In the meantime, stay warm! I just can't even imagine that kind of cold...