1. < Hypertrophic Cardiomyopathy (HCM)

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.

Mentor
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)
@starbuck41

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

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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...

REPLY
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
REPLY
1 reply
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)
@starbuck41

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.

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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…

REPLY
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)
@starbuck41

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.

Jump to this post

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! 🙂

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | May 11, 2023
In reply to @starbuck41 "I am the only veteran in the VA health system countywide that is getting this drug,..." + (show)
@starbuck41

I am the only veteran in the VA health system countywide that is getting this drug, my case / condition is being reviewed/watched by about 200-300 doctors for potential treatments for other veterans. Cardiologist appointments every 3weeks, ecg’s every 4weeks for the first 6months..
My understanding should this be successful that many vets will benefit and begin to get the same treatment

Jump to this post

The WWII Mine Sweepers had a motto: "Where the fleet goes, we've been!"
That's you! The first Veteran to go. I am very excited for you. Wow, so many eyes on you now...no pressure!
It sounds like they have a good plan going forward. If all goes well, will this be written up in the US Veterans and Military Magazine? Can you picture yourself on the cover? What a great interview it would be!

REPLY
darryl | @darryl | May 11, 2023

I have been taking Camzyos for 5 months and now I can walk without being out of breath

REPLY
starbuck41 | @starbuck41 | May 11, 2023
In reply to @karukgirl "Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service..." + (show)
@karukgirl

Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service to our Country as well. The VA is an interesting institution in what they chose to support or not support. My dad was a WWII veteran, serving on a mine sweeper during the war. I had many encounters with the VA taking him to our little center for all sorts of things. I hope the best for you beginning this new drug. Following some of the other folks here it sounds very promising. It takes courage to try a new drug not knowing how it may affect you. It sounds like from the others on here there is a little transition in the beginning. High elevation is very hard on HCM people, so there is that too. The drug was not approved yet when I had my surgery, but I can tell you this...I would have liked to have had a chance to at least to try it. I can also tell you that nobody, no, not one person, would want to have open heart surgery, but if your choice comes down to surgery or living half of a life because of HCM, choosing surgery is the best choice. I had the best care on the planet at the Mayo Clinic in Rochester. I'm only mentioning that because should the Camzyos end up not being your friend, not to fear surgery. Have the VA doctors got a plan for close follow up? You mention that all eyes of the VA are on you and your doctor, will they be following your doctors recommendations?

Jump to this post

I am the only veteran in the VA health system countywide that is getting this drug, my case / condition is being reviewed/watched by about 200-300 doctors for potential treatments for other veterans. Cardiologist appointments every 3weeks, ecg’s every 4weeks for the first 6months..
My understanding should this be successful that many vets will benefit and begin to get the same treatment

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | 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)
@starbuck41

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.

Jump to this post

Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service to our Country as well. The VA is an interesting institution in what they chose to support or not support. My dad was a WWII veteran, serving on a mine sweeper during the war. I had many encounters with the VA taking him to our little center for all sorts of things. I hope the best for you beginning this new drug. Following some of the other folks here it sounds very promising. It takes courage to try a new drug not knowing how it may affect you. It sounds like from the others on here there is a little transition in the beginning. High elevation is very hard on HCM people, so there is that too. The drug was not approved yet when I had my surgery, but I can tell you this...I would have liked to have had a chance to at least to try it. I can also tell you that nobody, no, not one person, would want to have open heart surgery, but if your choice comes down to surgery or living half of a life because of HCM, choosing surgery is the best choice. I had the best care on the planet at the Mayo Clinic in Rochester. I'm only mentioning that because should the Camzyos end up not being your friend, not to fear surgery. Have the VA doctors got a plan for close follow up? You mention that all eyes of the VA are on you and your doctor, will they be following your doctors recommendations?

REPLY
1 reply
starbuck41 | @starbuck41 | May 10, 2023

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.
REPLY
3 replies
kelliw | @kelliw | May 8, 2023
In reply to @klima12 "Can anyone provide information on if they know the long terms of this drug? Do we..." + (show)
@klima12

Can anyone provide information on if they know the long terms of this drug? Do we take it forever. I started it 5 weeks ago and my heart is feeling better but I’m more tired, dizzy and nauseous. I think it’s dropping my already low blood pressure. Any insights would help. Thank you

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I experienced dizziness about 3 weeks into it, for 2 weeks, but the dizziness is gone now, so hopefully that will happen to you too. I have been tired too, but am not sure if it is because I am a teacher and the school year is wrapping up and everything is kind of crazy. Can't wait for summer and hopefully fatigue will disappear. 🙂

REPLY
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