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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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Hello All, I haven't posted in a long time. I have had a bit of a hiccup with the "funding" of my Camzyos. The new year and a new drug plan means that I will miss 8 doses. My Dr. say I'll be ok but it will be interesting to see what/if I have any noticeable symptoms.
Anyone else miss doses ever?
I'll post in the future with any interesting results. I'm a bit nervous
Hello @lakehappy. In the early days of my Camzyos treatment I had a little trouble getting into the daily habit and missed a couple (single) days. Did not feel any effects. Then I had one delivery that got weather-delayed by almost a week and I would have run short. So I just decided on my own to ration what I had left over the remaining days (one every other day for about 4 days). Not ideal but it was either that or go without for the whole time. Again, no noticeable effects.
My reasoning: (i) Section 10.3 of the Camzyos monograph (https://pdf.hres.ca/dpd_pm/00074626.PDF), says that under certain conditions, the "apparent first order terminal elimination half-life" for Camzyos is about 4 days. (ii) Another source (https://www.news-medical.net/drugs/Camzyos.aspx#:~:text=tells%20you%20to.-,If%20you%20wish%20to%20stop%20taking%20Camzyos%2C%20notify%20your%20doctor,drug%20after%20you%20stop%20treatment.)says "Camzyos may remain in the body for at least 4 months after you stop treatment."
I took all this to mean that if I went for 4 full days without taking my proper dose, the amount of the drug in my system would drop by about half, but going to every other day for a few days would have a much smaller effect. Spreading what remaining doses I had available over too many days seemed the lesser of the evils. As I have stated before, this is NOT medical advise. I'm not a doctor, and I've never played one on TV. Just relaying my own experience with missed doses - while an echo might have noticed a difference, I could not feel any difference over that short time.
I am taking Camzyos since October 2024. After the first month it went remarkably well and the doctor reduced the dosage. After the second month he was concerned (after another echo) he was concerned that it over compensated and took me off the drug for a month. After my last echo he put me back on the lower dose. During the month I was off I began getting out of breath again and sometimes dizzy. It appears the drug helped a lot but dosage needs to be adjusted.