Anyone take new drug Camzyos (mavacamten) for HCM?

How utterly disappointing @katiekins. I'm so sorry you had to experience these terrible side effects. I would be disappointed too. What is your next step? Have you had a chance to discuss this with your cardiologist?

Sadly I have had to stop as suffered severe side effects. Very upset…. Severe headaches, jaw ache and not going to the loo (urine) so very very disappointed! Back to the drawing board.

Joint paint on Camzyos? Had my Camzyos increased from 5mg to 10mg just over 2 weeks ago and have had 2 bouts of really peculiar joint pain. Sitting idle, and over the course of about 1-2 minutes every joint in my body - spine, knees, knuckles, jaw,... - builds from zero to almost crippling pain and then suddenly subsides just as fast. Has never happened in living memory. I can't imagine it being related but the only thing different is the move to higher dose Camzyos. Sound familiar to anyone?

That’s wonderful news. Kate

Mavacamten is highly regulated by a program called REMS. They do not, to my knowledge give to regular pharmacies or mail orders. I have mail order and they would not do it. You have to get it from a "specialty" pharmacy...I got mine from NYU Hospital and I know that any doctor that is on their program has to abide by their rules. Strict guidelines for this drug. They only dispense 30 pills at a time in conjunction with a specialized pharmacy. Regular echos as well. I started Mavacamten in February of 2023 unless things have changed. Not all cardiology doctors are in this program. I had asked my regular cardiologist and he said he did not participate. So even though other countries have approval for this drug, you would have to find a cardiologist who participates. I am sure that Camzyos has thought of this.
I hope this helps. Good luck.

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!)