Anyone take new drug Camzyos (mavacamten) for HCM?

I’m curious about where Camzyos will be made available internationally for patients.
Also, does
anyone have tinnitus? (My symptoms have been strong for about a year.) I’m on day 5 of 5mg Camzyos and was previously taking Rythmodan. Did your tinnitus improve?

Yay! That is great news! That is basically what my doctor said too! Thank you for clarifying for me. I'm so glad they both said the same thing and that we are both having such great responses to this medication! About to go out on our friends' boat! Enjoy the rest of your day. Thank you again!

Doc just connected with me and it turns out it's all good news. My echo showed that I've had an excellent response to the medication (which I already knew), to the point that the abnormal gradients of pressure in my heart are now virtually non-existent (wow!). He said this necessitates a dose reduction to ensure they don't over-do it, and there may be further adjustments after each future echo.

So I guess this is just how they determine the optimal dose for me. I'm going to stop worrying now and and go back to basking in my new found health.

I read this article in January before I had been approved to take Camzyos and before I changed to a doctor from Washington U's cardiology department. This is very helpful for understanding this drug (especially the first three paragraphs).
https://www.barnesjewish.org/Curiosus-Mag/Article/ArtMID/6756/ArticleID/2281/NEW-DRUG-POSITIVE-RESULTS-FOR-HYPERTROPHIC-CARDIOMYOPATHY

Hi Hans-thank you so much for your response! I am really bummed because I don't want to start feeling horrible again either. I know-we both feel great with things the way they are! It's only been 62 days-but maybe it's better for us to be on the lowest dosage, as long as we keep feeling great. If not, my doctor said I can go back up. He said he had to lower the dose because my gradient numbers are so good now. Anything under 20 needs to be dropped down to 2.5. Please keep in touch and let me know how you are feeling when you switch. I will do the same. I should get the new prescription on Wednesday, I think.

Hi Kelli,
I just heard from the pharmacy this morning that my dosage is also being dropped to 2.5mg for the refill coming tomorrow.
I currently feel great and had an echo last friday and assumed I'd just be continuing with 5mg. I'm a little nervous about the drop in dose and hope it's still going to keep working for me. I have left message for the doctor to find out why it's being lowered. I certainly don't want to go back to feeling terrible and not being able to walk any distance.

Hmm🤨I am not a doctor, I don't portray one on TV and I didn't stay in a Holiday Inn Express, so I can't comment on his comment...but it kinda makes sense. I guess? If the drug is supposed to decrease the myosin, enable the heart to relax and then beat more free, then maybe? It's maybe not used to being "normal", therefore, now with help from Camzyos, it's acting more normal and I just don't know! I'm glad you're better today. I hope you enjoyed church, lunch and golf. Life can be difficult and those special moments make the difficult ones easier to deal with. Having a heart issue, like we do, is hard to deal with sometimes. Anxiety creeps in, doubt, and wonder...but God is in control. Always and forever! I'm honored to be a sounding board for you 🙂

Hey @starbuck41, how's it going? Haven't heard from you in awhile...you are what now? Day 17? You and Murphy have plans for Memorial Day? Everything going along good?

This morning my BP was 148/102. Just took it and it was 176/100. Just picked up the clonidine patches. Will put on tomorrow. My BP is usually around 154/80, so definitely higher. My dr. said maybe it is higher because my heart hasn't worked for so long, that now it is high horsepower mode? I haven't heard of that before, but the patch should help. I feel better today-no dizziness and my chest doesn't feel tight. Went to church and took my mother-in-law to lunch for her bday. Going to try to fit in 9 holes of golf soon. Thank you so much for being there to bounce things off of! 🙂

Whoa! That IS high BP 😮
Does he think it may be a side effect of Camzyos? Have you had high BP before? I hope you get re-checked sooner than later...how scary it must be! Sailing along, doing awesome and then this. Do you think you're anxious about lowering the dose and it may be causing you stress? Have you started the Clonidine patch yet?