Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Kelli, yes I’ve been on the lower dose since mid-week. No noticeable change, but that time I ran out I went 5 days before it was a problem. My daily walks should be a good indicator because I couldn’t do any of that for the past couple years. If the dose is too low I’m sure I’ll notice.

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.

Thank you! I can now relax! My daughter is flying in for a week, from Nashville, so am super excited to spend time with her! 🙂

Whew! That was a huge amount of stress you did not need! Don't worry, you're still the poster child for positivity...anyone would have been stressed out going through that. What a bunch of hooey! I hope you can relax and enjoy the weekend now. You got this!!

Thank you! I just got off of another 50 minute phone call trying to sort all of this out. My doctor finally updated the REMS portal this morning, so after being put through to 4 different people, my new lower 2.5mg dose is being shipped today, to arrive tomorrow, so I won't miss a day. Thank goodness! Thank you for your words of encouragement! This has been pretty stressful-trying to teach my children and keep them busy while dealing with all of this! Very time consuming. I guess I should be grateful though that there are strict protocols in place to keep me/all of us safe. I try to be a positive person most of the time! 🙂

So glad to hear you're safe and back home. Even with all your great care, there's no place like "home". You are so correct about the unsung heroes of the medical profession. Those nurses can make an unpleasant time so much better. They can't make the pillows softer or the beds more comfy, but they get you a green popsicle or ice cream cup to make you feel better. They can bring you a warm blanket if you're cold. It's the thousand little things they do that combined with the big things make us better. Welcome back! You have plans for something fun after you're all better?

Oh my GOSH! @kelliw! What a frustrating time you've had. And it doesn't help that you were already anxious about the new lower dose. I'm stunned, but not surprised by the treatment you and your doctor received. It's Friday. The weekend is coming. Are you hooked up now with the correct dose and have the pills in your possession?

I actually just got home yesterday afternoon and got settled back in.
I am feeling good so far, but can definitely notice a bit of a change in the way I feel at times. Haven’t really been able to pinpoint it yet, but it’s not a bad feeling by any means.
I went off of Amiodarone and Metoprolol throughout the process and it is now replaced by Sotalol. Sounds like a great trade-off, but time will ultimately tell the real story.
The care I received was excellent. I truly feel like the medical profession, especially the nurses, don’t get the credit/appreciation they deserve. Without them and their dedication to their profession, this world would be in absolutely horrible shape. So, with that being said, thank you to all of you. You are greatly appreciated…