Anyone take new drug Camzyos (mavacamten) for HCM?

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! 🙂

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

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.

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.

I just got really dizzy in the grocery store. I had 2 cups of coffee this morning, which I rarely do. That could be the problem. Hoping to go for a walk later too. Did you run out because of the prior authorization problem, like my doctor and I had this week? It really helps talking to you since we are in the same situation.

Yes, it was a mix up in communication but my doc has it all figured out now.
My pup Charlie is loving all these walks

Charlie is adorable!!! Gorgeous scenery too...glad to hear you are doing well @hansj. That was scary sounding when you ran out of meds for five days! You and @kelliw are on the same timeline it sounds like. I'm glad you can help each other by sharing information. How long after the lower dose, will you have your next echo?