Anyone take new drug Camzyos (mavacamten) for HCM?

After my Dr recommended it, I did some research on the drug. The heart failure possible side effect scares me. I think I am leaning towards the ablation.

I started Camzyos October 7th 2023 and seem to do well on 10mg. I still get palpitations and shortness of breath, not sure why. I am on the heavy side and out of shape so trying to fix that. I am still getting it free but just a month at a time. I am a Canadian and in my 70's but the government won't cover the cost yet but hopefully soon. So far I am getting it free. We figure my Father died from HOCM in 1961 at 44 years old.

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

Hi @judymw, and a warm Mayo Clinic Connect welcome! I'm glad you found this site and especially the Camzyos group.
Have you had a chance to read some of the stories on here?
There is a lot shared amongst the Camzyos group and this bunch of brave folks have a boat load of experience that sounds similar to yours. The ups and downs of Camzyos, the good and bad, the positive and the negative are a common theme here.
Is your doctor experienced with Camzyos and HOCM? Are you back on it again? When do you see your doctor again? When is your next echo? Wow! That was a lot of questions!

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.

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.)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.

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

I have a feeling you will be fine.

Kate - my gradient is 60 which I understand to be high. I am just about to go on verapamil and jardiance but don't know how that will go. I haven't taken anything else yet. Thanks for responding!

Any eating with HCM or HOCM one will feel exhausted after eating I have had this for years. I have just had my mitral valve replaced (taken a long time ti figure this out as felt fine and no symptoms. 4 months on have had a tough recovery with pneumonia and Covid. Now have A F and fluid on the lungs. Was it worth it I don’t know. Anyone else had a similar experience.