Anyone take new drug Camzyos (mavacamten) for HCM?

Great to hear from you @starbuck41/Dave! I bet you are anxious to hear what the cardiologist has to say at your appointment tomorrow. Murphy is very handsome, and he eats a lot of steak and eggs, how is his cholesterol?

Okay so it’s been a few days since I posted.. so here’s a recap.
It’s day 20
Weight 266.7
5mg has been abnormally consistent at about 0807am every day, within minutes or seconds of previous days.
I’m on no specific diet but I’m prone to eat high protein in the from of Steak and always coffee in the am.
So labs..
Cholesterol was borderline high
Glucose was 112… pre diabetes
Everything else was in normal range
Blood pressure 102/86.. I have not taken beta blockers or bp meds since starting Camzyos. Still no outward side effects.. sleeping solid.. cardiologist appointment is tomorrow..will report back what he says..
Tonight’s menu
Ribeye, baked potatoe, ice tea, and some kinda green vegetable.. me and Murphy are gonna have steak n eggs for lunch..
Until tomorrow y’all have a wonderful day and stay safe
Dave

I agree with @jaymaysea, I read the article too @nbs, and found it very informative. The long term effects are not known yet since it's so new, but it seems it is very helpful for most HOCM, but not all, folks trying it. Thanks for sharing the article.

Excellent article. I learned a lot. Thank you so much for posting.

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.