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.

@irishpeaks

I started out on the flatlands, so I know where you’re coming from. A place all its own.
I do get labs once every six months maximum. If I feel “off” for an extended period of time, I’ll go in sooner. My diet consists of unprocessed, low-sodium, high protein foods mostly. I have cheat days on occasion, but I try to stay pretty strict. 2000mg of sodium or less per day is the goal.
My heart condition is super hereditary (it killed my father at 31 and my brother was at the Mayo Clinic getting a full transplant when my VT began and I was eventually diagnosed with cardiomyopathy) , so I don’t have much choice.
I’ve read quite a few stories on here, great place to associate with like-minded folks. Thanks for your time, it’s always appreciated.

Jump to this post

Your dietary goals sound reasonable and sound @irishpeaks. I've read a lot lately about processed foods and their negative impact. Having a 'cheat day' makes life worth living! I've been having way to many 'cheat day's' lately. I need your discipline!
It must have been super stressful having lost your father at such a young age, seeing your brother go through the process of a heart transplant all while you began the same journey. That's a lot to process! Thank goodness you have found an association here on Mayo Connect that you can share with "like-minded folks." Knowing what you know now, and being able to make decisions for your better health is a good thing. You may not have much of a choice, as you say, about your diagnosis, but you do have a choice about your attitude. You have a really good attitude. It comes across in your posts.

REPLY

Day 3
5mg at 0815 am
Weight 268.2lb
Breakfast was
10oz coffee
1/2 can Celsius (I spilled 1/2 of it)
500mg metformin
Today I feel great, no side effects have manifested, dinner will be grilled salmon, and some pasta

Note: I take oxycodone 10/325 for chronic severe back pain, at least 1x per day no side effects noted.
Also I drink a couple of 12oz frescas throughout the day..

Later in the week I’m gonna to head up to 13,000ft elevation to test the waters.. and take some pictures..I’ll update good or bad how it went.
See y’all tomorrow
Dave

REPLY
@karukgirl

All that you mentioned sounds like very sound practice...for many of us! Keep that positive attitude up there in your high altitude!
Embracing a positive outlook has many benefits to not only our physical health, but our mental health as well. Thanks for sharing @irishpeaks, I liked your comment about being mindful of more than just your surroundings, it's not easy sometimes living with a heart condition, but you sound like you are enjoying life where you are and making the best of it. We got almost 8 inches of snow this year! Brought the whole community to a halt! We are flatlanders! I'd wager you got a bit more than that. Do you have to have regular labs to keep track of your potassium? Do you follow a specific diet for your heart block?

Jump to this post

I started out on the flatlands, so I know where you’re coming from. A place all its own.
I do get labs once every six months maximum. If I feel “off” for an extended period of time, I’ll go in sooner. My diet consists of unprocessed, low-sodium, high protein foods mostly. I have cheat days on occasion, but I try to stay pretty strict. 2000mg of sodium or less per day is the goal.
My heart condition is super hereditary (it killed my father at 31 and my brother was at the Mayo Clinic getting a full transplant when my VT began and I was eventually diagnosed with cardiomyopathy) , so I don’t have much choice.
I’ve read quite a few stories on here, great place to associate with like-minded folks. Thanks for your time, it’s always appreciated.

REPLY
@irishpeaks

Hi,
I do get out as often as possible and enjoy the altitude, I am just more cautious about things now. Really watch my electrolytes (especially potassium) and just keep a pace conducive to someone who needs to be mindful of more than just the surroundings. I always let someone know where I’m going, and always take company when it works out, just in case.
There is a lot of snow this year, lots of fun and good runoff this spring!

Jump to this post

All that you mentioned sounds like very sound practice...for many of us! Keep that positive attitude up there in your high altitude!
Embracing a positive outlook has many benefits to not only our physical health, but our mental health as well. Thanks for sharing @irishpeaks, I liked your comment about being mindful of more than just your surroundings, it's not easy sometimes living with a heart condition, but you sound like you are enjoying life where you are and making the best of it. We got almost 8 inches of snow this year! Brought the whole community to a halt! We are flatlanders! I'd wager you got a bit more than that. Do you have to have regular labs to keep track of your potassium? Do you follow a specific diet for your heart block?

REPLY
@karukgirl

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!

Jump to this post

Hi,
I do get out as often as possible and enjoy the altitude, I am just more cautious about things now. Really watch my electrolytes (especially potassium) and just keep a pace conducive to someone who needs to be mindful of more than just the surroundings. I always let someone know where I’m going, and always take company when it works out, just in case.
There is a lot of snow this year, lots of fun and good runoff this spring!

REPLY

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

REPLY
@karukgirl

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.

Jump to this post

Lol

REPLY
@starbuck41

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

Jump to this post

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.

REPLY
@starbuck41

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

Jump to this post

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

REPLY

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

REPLY
Please sign in or register to post a reply.