Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

starbuck41 | @starbuck41 | May 13, 2023

Day 2
5mg at 0813
Ta Quito’s for lunch
20oz coffee for breakfast with meds
Weight unchanged
I feel normal, not like the first day.. I guess I was all psyched up after reading all I can..
took 500mg metformin
See y’all tomorrow

starbuck41 | @starbuck41 | May 13, 2023

In reply to @karukgirl "Hmmm...Sounds like you're tempting fate with that dbl burger/cheese/bacon/xtra crispy onion rings!!! Maybe put some kale..." + (show)

Lol

Debra, Volunteer Mentor | @karukgirl | May 12, 2023

In reply to @starbuck41 "Ok so I’m feeling normal now Lunch/dinner Dbl whataburger with cheese and bacon, large extra crispy..." + (show)

Hmmm...Sounds like you're tempting fate with that dbl burger/cheese/bacon/xtra crispy onion rings!!! Maybe put some kale on the burger next time, that way it will be "healthier" 😉
Take care @starbuck41, tomorrow is another day.

starbuck41 | @starbuck41 | May 12, 2023

In reply to @starbuck41 "Took my first dose 08:14 Morning weight 269lbs Had 20oz coffee Ate 3-4 crackers No other..." + (show)

Ok so I’m feeling normal now
Lunch/dinner
Dbl whataburger with cheese and bacon, large extra crispy onion rings and a large Diet Coke.
1/2 can of Fresca

500mg metformin
That’s day 1 in the books, ill see y’all tomorrow
Dave

starbuck41 | @starbuck41 | May 12, 2023

Took my first dose 08:14
Morning weight 269lbs
Had 20oz coffee
Ate 3-4 crackers
No other meds taken, I’m not sure if I feel normal, but I feel different could be in my mind ..it’s been about 4hrs.
I’ll update In comments later what lunch and dinner plus any side effects. Until then y’all have an awesome day.
Regards
Dave

Debra, Volunteer Mentor | @karukgirl | May 11, 2023

Hi there @irishpeaks , that was good to hear you don't have an issue with elevation. I live literally 500 feet above sea level, and every time I went to higher elevations for hikes to Mt. Lassen, Mt. Shasta or Mt. Anything I suffered! Short of breath, dizzy, gasping for air...I knew something was wrong, and it kept getting wronger! There are so many forms and causes of cardiomyopathy, it is like a catch-all phrase. Hypertrophic Obstructed Cardiomyopathy is a bit different than non-ischemic cardiomyopathy, but I am glad to hear you do not have issues with elevation. I feel bad you have a 'full block', that has to be limiting and always in the back of your mind. Hopefully the meds you are on are helpful. Colorado has some BIG mountains. Like the real deal mountains. Are you able to get out and enjoy their beauty? 8500 ft., I bet you got some snow this year!

Debra, Volunteer Mentor | @karukgirl | May 11, 2023

In reply to @starbuck41 "It arrived today, late due to bad weather, I will start this tomorrow at 0800, prolly..." + (show)

I see a beautiful "puppy" in your picture is watching you too! Yes, please keep posting, even the 'boring' stuff. That way you can compare with the others using this same med and share experiences. That's what Mayo Connect is all about 🙂
Until tomorrow...

starbuck41 | @starbuck41 | May 11, 2023

It arrived today, late due to bad weather, I will start this tomorrow at
0800, prolly have a salad tonight for dinner so my diet will be healthier..
but so there’s a record for y’all and me, I want to give all the facts of my journey ..diet, meds, physical activity.
Noticed side effects..
It may be boring so please bare with me, I figured the more concise the better for those who are on the fence about taking this approach: so I’ll see y’all tomorrow morning
Dave

irishpeaks | @irishpeaks | May 11, 2023

In reply to @starbuck41 "Hey y’all, Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As..." + (show)

I lived around 8500 ft. In elevation in Colorado and didn’t have any issues with the elevation. I have non-ischemic cardiomyopathy with a full block and am on several meds, obviously. Hopefully your new meds work and you can enjoy those outstanding mountains! Keep fighting the good fight…

kelliw | @kelliw | May 11, 2023

In reply to @starbuck41 "Hey y’all, Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As..." + (show)

Yay! That is great news! I will be anxious to hear! Hopefully it will act quickly for you as it did for me and some of the other people in this group! So exciting! 🙂