Anyone take new drug Camzyos (mavacamten) for HCM?

It will be interesting in three weeks to see what my next echo shows. I don't feel as energetic on the lower dose as I did on 5 mg. My breathing is heavier walking up stairs and walking up hills. However, the weather is now hot and my OHCM is always worse in hot weather. I do feel better than when I wasn't on camzyos.
I am glad you are feeling well!! It is encouraging for all of us to know this drug works. In the original study they waited 30 weeks to determine if it was working on the patients in that study.

Good morning! I feel the exact same way, being on 2.5mg now. I was only on 5mg for 62 days and was feeling SO GOOD! I was really disappointed to be switched so soon. I definitely feel much better than before I was on it, but yes, more tired and a bit winded. I had my echo Monday. Will meet with the dr. next Monday. Will report what he says. It is so awesome to hear how other people are doing on this journey! 🙂

My cardiologist goes by the book so I am hoping that my LVOT (Left ventricular outflow tract) goes to 20 or above but also in a normal range when I get my next echo. It dropped from 100 to
16 mm HG. In my google research I found this statement "LVOT obstruction is defined as a peak instantaneous gradient greater than or equal to 30 mm Hg. A gradient greater than or equal to 50 mm Hg is generally recognized as the threshold at which LVOT obstruction becomes hemodynamically significant."

So, I was hemodynamically significant. I have never been called that before all of this testing.

My LVOT was 75 and dropped to 8. Which I think is really good!?! But that is why he had to lower my dose. I sure hope he doesn't take me off of it! Thank you for this info! 🙂

Good Morning!
I've purposely been holding off on making any statements about how I'm doing on the lower 2.5mg dose because I wanted to make sure it wasn't just in my head. I certainly had a bit of anxienty over changing the dose because I didn't want to lose how amazing I was feeling, and also recognize that emotions/fear are not reality. I've been on the lower dose for 3 weeks now and while I still feel pretty good in general, I've defintely noticed that I start to get out of breath after about 1/2 mile of walking. Thankfully no chest tightness like before being on this drug, but defintely have lost some of my new found "omgIfeelGreat!"
I'm going in for my next echo on friday so we'll see.

I’m so irritated
The red tape is exhausting, I’m out of Camzyos no one can tell me what the 1/2 life is while I wait for it to get fixed.
Total days 35
5mg at 0800
Wt 267.3
Male 59yr
20oz coffee and 10oz of ice cold Dr Pepper. I’ve had absolutely zero adverse effects and the shortness of breath has diminished significantly. I haven’t changed my diet but I’m more active now because I’m feeling better..hopefully within the week I’ll get my meds and start this all over again.
I know this sounds weird but since starting Camzyos I dream vividly every night., I used to not.. anybody else?

Well I’ll pick this up when I get my meds and start again..

Have awesome days y’all
David

Hi David, Do you have a Nurse Care Manager assigned to you by BMS?
I was also someone who ran out of meds and went 6 days without (didn't notice any issues until day 5). A week after this event I had a regular check in from the nurse care manager and she advised that if this ever happens again to contact them and they will expedite a resolution.

Hi Hans-Thank you so much for your response. Yep I feel the same way. I have had some chest tightness and feeling like someone is squeezing my heart at times. Please let me know what your doctor says. I go to mine on Monday and I will let you know what he says as well. Take care! 🙂

Hi David-That is SO irritating. The kinks are not fun. I have dealt with stuff like this too when my doctor had to change me from 5mg to 2.5, It was very stressful. I am also having very vivid dreams each night! Strange! We must be sleeping well! I hope this gets fixed tomorrow!
Kelli

I got a call from Camzyos Rx, they won’t be sending it out till tomorrow to arrive her Friday..
I won’t have taken it for 3 days by the time it gets here and then will wait until 0800 the following day to start again .. I’m trying to be consistent. Seems to be corrected with the pharmacy but I don’t have faith..
All still seems well at the moment with no degradation in effectiveness but to be honest I’m not pushing any physically challenging chores.