Anyone take new drug Camzyos (mavacamten) for HCM?

I live in Oklahoma. I’ve been on Camzyos since 10/4/23. My understanding is that both pt and Dr have to enrolled in the REMS program. There are limited pharmacies that make/provide the drug.
The echos are essential for refilling.
(My experience): if you have more than 5 pills left they won’t even talk to you about a refill.
And I have had a month where they were waiting on something from the Doc. So that delayed the refill process also.
I am happy to hear that Camzyos has worked for some folks out there. It has made side effect symptoms worse for me.
I was very apprehensive about starting it too, that warning of heart failure on every other line of the stacks of information they send you is very scary.
I wish you only the best in your journey.

I found this article about this medication and availibleaty is mentioned in Japan here is the web site. https://pharmaphorum.com/news/bms-buys-asian-rights-key-growth-drug-camzyos

Im not sure about that particular drug but if you talk with his doctor he may be able to get a longer supply for the trip. I get most of my meds via mail order and I'm thinking maybe the doctor could send a scrip to a mail order pharmacy. I know mine is called Express Scrip. Its one the military uses so I'm thinking they may ship worldwide. As a retired military I'm pretty sure a moder country like Japan probably may even be able to get the medication if your son contacted maybe a local pharmacy in country? As for the echo I'm pretty sure even that could be done in Japan also. I know for instances mayo Clinic has provided medical services to foreign patients, so it seems possible for anyone to get treatment overseas.
As a side note I remember asking a travel service in Israel if being a Heart Transplant patient if it would be a problem to come to Israel on vacation if something happen could I get treatment in Israel and the answer was a Yes and in my case, Israel does transplants in TelAvive so no problem. I'm guessing the same is possible in a country like Japan also. Please let us know what you find out? it may help others deciding on travel overseas.

Does anyone have any information on getting CAMZYOS overseas? My son would like to spend some time in Japan, he has been on the drug for 18 months with an excellent response. I would need to get him an echo every three months there and ship the drug to him.

I should clarify - I *FEEL* fantastic - especially when I compare it to the decline over the past 17 years. So from my own point of view, 5mg seems GREAT. So why would my cardiologist increase the dose? Well, he is looking at the objective test data and measurements and sees room for even further improvement in that area. That's his area of expertise, not mine. Given the improvement so far under his care, I'm very happy to let him lead me along that path. And who knows - maybe at 10mg I will feel even better! Worst case scenario from this decision is to return to 5mg. (That said, if he wanted to pull me off Camzyos after it gave me my life back - I'm sure I would fight like he** about that!)

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!

@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...

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.

This was exactly what happened to me! I was decreased to 2.5mg after being a “super responder” as well (Dr. Rowins words). Unfortunately, I haven’t noticed a great improvement so far but no down side to date. I’m hopeful this Weill improve over time. Keep us posted.

Hi ! I saw Dr. Rowin. I have done 1 month on 5mg. First echo results were so good, they dropped me to 2.5mg. Second echo #s were such that I STAYED on 2.5mg, even though I had a gut feeling I should be on 5mg. Had 3rd echo and results were still really good, but in the range such that I could go back to 5mg. Just started that dosage Dec. 22. No extreme changes in symptoms yet, but I feel like I have to give the 5mg a multi month test first. Again, my symptoms weren't too bad to begin with. The doctors have stated that they think I'll never be on 10mg due to the fact that I am a "super responder" to Camzyos. That analysis was based on my gradients being reduced by nearly 2/3 during the first 30 days !