← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@lakehappy

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

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Replies to "Hello All, I haven't posted in a long time. I have had a bit of a..."

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 have missed a day every now and then with no noticable affects. The half life of Camzyos is about 6 days depending on your metabolism, and in your system longer. It is not like aspirin etc that attacks the symptom. But Camzyos deals gradually adjusting the functional efficientcy of the heart muscle fibers. Bottom line suggestion: take one of your remaining capsules every other day until your refill is available. This will even things out. Also, your specialty pharmacy may be able to fill a 5 day supply in situations like this ..... Not sure about the cost/insurance coverage. Just some thought from a fellow patient..... Not a doctor. Your MD could confirm.
Best wishes.
Curt

In my case, I'm certain that I do notice when I have missed a dose. I take my 5mg in the morning and if I go for a walk in the late afternoon and find myself getting breathless, I always discover that I forgot my pill that morning.