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!

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jaymaysea | @jaymaysea | Jul 26, 2023

Thanks so much for the positive note. It really means a lot.

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 25, 2023
In reply to @jaymaysea "Hi Camzyos Family, I have been on Camzyos now for six week. I am still not..." + (show)
@jaymaysea

Hi Camzyos Family, I have been on Camzyos now for six week. I am still not really feeling better; still have shortness of breath and fatigue. How long did it take for the positive effects to kick in?

My Dr. told me he was “required” to lower my dosage from 5mg to 2.5mg. based on the results of my echo. So I guess that I am an algorithm. I am very disappointed to go to the lower dosage since I wasn’t feeling better at the higher dosage. The Dr. said it takes a while for the drug to build up in you system. 😣

I have a meeting with him on Wednesday and my next echo is 8/7th. Will report back.

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@jaymaysea, I hope it goes well for you tomorrow at your visit. @kelliw shared that the doctor is in the drivers seat and works with the patient, they can overrule the drug company protocol and adjust as they see fit...maybe your doctor does not know that? How you feel and how you are reacting should be the reason to adjust medication, based on the treating physician's opinion, not on the drug company's protocol. You are a person, not a number!! We are all different and react different. Six weeks seems like you should be seeing better results, but you still feel icky, and HOCM symptoms are still there...GRRR

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kelliw | @kelliw | Jul 25, 2023
In reply to @karukgirl "That must have scared you a little bit @kelliw when he wasn't happy and came in..." + (show)
@karukgirl

That must have scared you a little bit @kelliw when he wasn't happy and came in to show the tech where to go over again! But what glorious news! I'm glad you are doing so well and that you feel like you have your life back again! And let's not forget how blessed you are with that awesome doctor of yours too! He's a real advocate for you and rare to find...

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Hi Debra-Yes it did scare me but he said don't worry I just want to be very careful with you and I'm not happy with how this one thing looked so we will do it again. He is so amazing! 🙂

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 25, 2023
In reply to @jenywilliams "HCM. FROM AN EET procedure, my heart Dr determined the hardness of part of my heart..." + (show)
@jenywilliams

HCM. FROM AN EET procedure, my heart Dr determined the hardness of part of my heart was causing poor circulation and camzyos has helped.

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SO glad it helps @jenywilliams...you have such a great attitude and you are living the best life you can with the cards you were dealt.

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 25, 2023
In reply to @kelliw "Good morning! I had my follow up yesterday and my dr. wasn't happy with part of..." + (show)
@kelliw

Good morning! I had my follow up yesterday and my dr. wasn't happy with part of the echo, so he came in and had the technician do part of it again, so he could guide him and see what he wanted to see. I am so continually impressed with my doctor. He said everything looks good-my LVOT was 75 at the beginning, went down to 8 for the 2 months I was at 5mg and is now at 19 on the 2.5mg. We are staying at 2.5mg because I feel good and my EF is strong. He is thrilled at the activities I am doing and that I have lost 10 pounds! Instead of seeing me in 3 months, he wants to see me in 6 weeks to check on everything. I am so very thankful to have my life back. I can't say it enough. Have a great day. 🙂

Jump to this post

That must have scared you a little bit @kelliw when he wasn't happy and came in to show the tech where to go over again! But what glorious news! I'm glad you are doing so well and that you feel like you have your life back again! And let's not forget how blessed you are with that awesome doctor of yours too! He's a real advocate for you and rare to find...

REPLY
2 replies
jenywilliams | @jenywilliams | Jul 25, 2023
In reply to @karukgirl "Thank you for sharing @jenywilliams! What a wonderful testimony for Camzyos! You've have gone through quite..." + (show)
@karukgirl

Thank you for sharing @jenywilliams! What a wonderful testimony for Camzyos! You've have gone through quite a journey...congenital heart disease, endometrial cancer, surgery, chemo and terrible fatigue and barely able to walk.
And here you are, 81 years young, feeling great and grateful and looking forward to more quality years! What a wonderful attitude.
I'm curious about Camzyos being used for something other than Hypertrophic Cardiomyopathy. You mention you have a "genetic heart murmur" because your lower heart is "hardened." Do you know exactly what you were diagnosed with?

Jump to this post

HCM. FROM AN EET procedure, my heart Dr determined the hardness of part of my heart was causing poor circulation and camzyos has helped.

REPLY
1 reply
kelliw | @kelliw | Jul 25, 2023

Good morning! I had my follow up yesterday and my dr. wasn't happy with part of the echo, so he came in and had the technician do part of it again, so he could guide him and see what he wanted to see. I am so continually impressed with my doctor. He said everything looks good-my LVOT was 75 at the beginning, went down to 8 for the 2 months I was at 5mg and is now at 19 on the 2.5mg. We are staying at 2.5mg because I feel good and my EF is strong. He is thrilled at the activities I am doing and that I have lost 10 pounds! Instead of seeing me in 3 months, he wants to see me in 6 weeks to check on everything. I am so very thankful to have my life back. I can't say it enough. Have a great day. 🙂

REPLY
2 replies
kelliw | @kelliw | Jul 24, 2023
In reply to @hansj "Hi All, it's been a week since I got back up to the 5mg dose and..." + (show)
@hansj

Hi All, it's been a week since I got back up to the 5mg dose and I'm happy to report that I feel really good again! I did a bunch of yard work yesterday without issue and haven't felt out of breath or light headed.

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Yay! That is such great news!! Thank you for letting us know!

REPLY
kelliw | @kelliw | Jul 24, 2023
In reply to @jaymaysea "Hi Camzyos Family, I have been on Camzyos now for six week. I am still not..." + (show)
@jaymaysea

Hi Camzyos Family, I have been on Camzyos now for six week. I am still not really feeling better; still have shortness of breath and fatigue. How long did it take for the positive effects to kick in?

My Dr. told me he was “required” to lower my dosage from 5mg to 2.5mg. based on the results of my echo. So I guess that I am an algorithm. I am very disappointed to go to the lower dosage since I wasn’t feeling better at the higher dosage. The Dr. said it takes a while for the drug to build up in you system. 😣

I have a meeting with him on Wednesday and my next echo is 8/7th. Will report back.

Jump to this post

Good morning-I am so sorry you are not feeling better and now have to be lowered on your dosage. It doesn't make much sense. If anything it seems like the mg should be increased! My doctor and I learned that the doctor can do what he/she thinks is best for the patient. They wanted him to stop my Camzyos altogether because my LVOT was so much lower than when I started, but he said no she needs to stay on it. She is feeling so much better on it than when she started. So hopefully you and your doctor can come up with a plan. Please let us know what happens on Wednesday. 🙂

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 24, 2023
In reply to @jenywilliams "I've been delightrd with camzyos for my condition. I have a genetic heart murmur because a..." + (show)
@jenywilliams

I've been delightrd with camzyos for my condition. I have a genetic heart murmur because a lower part of my heart is hardened. At age 78 I had endrometrius cancer, had a robotic hysterectomy followed with 6 months of chemo treatments. After that I had no energy and couldn't walk without losing breath. Saw a heart Dr who said after testing that I needed camzyos. I started at 5 mg and saw immediate improvement. March 5 after an ultrasound showing better numbers. I was increased to 10 mg. It's WONDERFUL FOR ME. AT 81 I AM FEELING GREAT and hope to have some more quality years.
Know it doesn't have same effect on all bur for me I'm very grateful.

Jump to this post

Thank you for sharing @jenywilliams! What a wonderful testimony for Camzyos! You've have gone through quite a journey...congenital heart disease, endometrial cancer, surgery, chemo and terrible fatigue and barely able to walk.
And here you are, 81 years young, feeling great and grateful and looking forward to more quality years! What a wonderful attitude.
I'm curious about Camzyos being used for something other than Hypertrophic Cardiomyopathy. You mention you have a "genetic heart murmur" because your lower heart is "hardened." Do you know exactly what you were diagnosed with?

REPLY
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