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.

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...

Jump to this post

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! 🙂

REPLY
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.

Jump to this post

@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

REPLY
jaymaysea | @jaymaysea | Jul 26, 2023

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

REPLY
jaymaysea | @jaymaysea | Jul 26, 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

Happy everything is working. You are so blessed to have a caring, proactive Dr. I see my Dr today. Will see how it goes.

REPLY
1 reply
nanakpm | @nanakpm | Jul 26, 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...

Jump to this post

You are lucky your doctor is so involved. A senior researcher on Camzyos acknowledged that it is important to have an experienced sonographer to do the echo. Because w HOCM there is contamination of the image and it’s hard to get a good reading. Great that your doctor came in to assist! And that he takes your functionality into account, not just echo results. Keep feeling better!!!

REPLY
1 reply
quinn | @quinn | Jul 26, 2023

Hello all. I posted on this thread about learning that I could take Lexapro for anxiety and depression with Camzyos. Regardless of what a Camzyos.Rems pharmacist may tell you, I recommend NOT taking Lexapro. According to the online pharmacist it is not contraindicated but it made me sicker than I have ever been. Have only taken it at 10 mg a few times but it most certainly does not mix well with Camzyos. Has anyone had success with a med while on Camzyos that can reduce anxiety and depression?

REPLY
kelliw | @kelliw | Jul 26, 2023
In reply to @jaymaysea "Happy everything is working. You are so blessed to have a caring, proactive Dr. I see..." + (show)
@jaymaysea

Happy everything is working. You are so blessed to have a caring, proactive Dr. I see my Dr today. Will see how it goes.

Jump to this post

Please let us know how it goes! 🙂

REPLY
kelliw | @kelliw | Jul 26, 2023
In reply to @nanakpm "You are lucky your doctor is so involved. A senior researcher on Camzyos acknowledged that it..." + (show)
@nanakpm

You are lucky your doctor is so involved. A senior researcher on Camzyos acknowledged that it is important to have an experienced sonographer to do the echo. Because w HOCM there is contamination of the image and it’s hard to get a good reading. Great that your doctor came in to assist! And that he takes your functionality into account, not just echo results. Keep feeling better!!!

Jump to this post

Thank you for that info! It was really reassuring that he would take the time to come in and see exactly what he wanted to see. I hope you have a great day! 🙂

REPLY
jaymaysea | @jaymaysea | Jul 26, 2023

My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!

REPLY
2 replies
kelliw | @kelliw | Jul 26, 2023
In reply to @jaymaysea "My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12..." + (show)
@jaymaysea

My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!

Jump to this post

Thank you for the update! I am on 50 mg of Metropolol. I hope you have a fantastic weekend with your friends! 🙂

REPLY
View MoreView Less
Please sign in or register to post a reply.