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.

jess51 | @jess51 | Aug 15, 2023
In reply to @newtosohcm "I am supposed to start it on 8/16/23. Anyone else out there on it with some..." + (show)
@newtosohcm

I am supposed to start it on 8/16/23. Anyone else out there on it with some encouragement/advice for me?

Jump to this post

Absolutely! Camzyos has been a great help for me. My experience was a few days of very mild reaction to the medication- which completely disappeared. Very happy customer here - as they say!

REPLY
1 reply
8leonard | @8leonard | Aug 15, 2023
In reply to @newtosohcm "I am supposed to start it on 8/16/23. Anyone else out there on it with some..." + (show)
@newtosohcm

I am supposed to start it on 8/16/23. Anyone else out there on it with some encouragement/advice for me?

Jump to this post

I started Camzyos on 7/26. I now can do more. I have spurts of energy. Hopefully the energy level will stabilize. I do feel better generally.

REPLY
darryl | @darryl | Aug 15, 2023
In reply to @newtosohcm "I am supposed to start it on 8/16/23. Anyone else out there on it with some..." + (show)
@newtosohcm

I am supposed to start it on 8/16/23. Anyone else out there on it with some encouragement/advice for me?

Jump to this post

Get ready to feel much better in about 3-4 days

REPLY
newtosohcm | @newtosohcm | Aug 14, 2023

I am supposed to start it on 8/16/23. Anyone else out there on it with some encouragement/advice for me?

REPLY
4 replies
nbs | @nbs | Aug 9, 2023

No, but Dr. Owens is brilliant. My cardiologist is Dr. Prabhu - also brilliant. I am only a few months ahead of you being on Camzyos. I think your doctor has more HCM patients involved with camzyos than my doctor and hopefully yours has figured out how to navigate Optum. Best of luck! I hope it works for you.

REPLY
1 reply
whidbey | @whidbey | Aug 9, 2023
In reply to @nbs "I have an update on my update - it's a procedural matter regarding renewing a prescription..." + (show)
@nbs

I have an update on my update - it's a procedural matter regarding renewing a prescription with the specialty pharmacy. In my case the pharmacy is called Optum. My next Echo is in three months because it appears that I am responding well to the dose. My doctor's office requested a three month prescription. Things I learned being on the phone forever with Optum: Camzyos is not allowed to be a three month prescription only a 30 day prescription. Every month I have to call in the prescription (since there is no change) NOT the doctor's office! They said that was because it is going to a home address. I can only call in when I have a 7 day supply left or less.

My doctor's office was not aware of this. I have no idea if this is a Restriction Prescription pharmacy rule but the only way I found out why my medicine was going to be delayed (which I fixed) was/is by calling the pharmacy and knowing what questions to ask. I have no idea if this is true for everyone or only Optum pharmacy. I have had so many shipping issues with Optum that I have called them every time I was told by my doctor's office that a prescription was being sent and each month it has been something. So be your own advocate. To me, it seems like they do not communicate with the doctor's office. What is most frustrating is that my doctor is chairman of Washington University's cardiology dept. and his department was part of the group involved with the trials for this drug and they are still involved. Sorry for being so longwinded but I recall others have had delivery issues in the past.

Jump to this post

Thank you for posting this information since I will be working with Optum as well! My Cardiologist is Dr Owens. Is that yours?

REPLY
gunnerman55 | @gunnerman55 | Aug 9, 2023

Hello all. I just started camzyos I’m on day 11. I was wondering if anyone on the drug had PVC’s before and if they went away after using camzyos. My PVC’s haven’t stopped and I was hoping they would reduce a little after using.

REPLY
nbs | @nbs | Aug 8, 2023
In reply to @captainterry "I have been on Camzyos for over a year. In fact, I started this string in..." + (show)
@captainterry

I have been on Camzyos for over a year. In fact, I started this string in the beginning when I was trying to get my first prescription. Here are my thoughts on your post.
CVS Specialty Rx has never dropped the ball.
They send email reminders each month and ship express 1 to 3 days to home or local CVS ..... your choice.
You must have fewer than 10 pills on hand in order for them to ship.
Yes you call Rx every month and talk briefly to an intake person and then transferred to their Specialty Pharmacist who asks the same safety questions each time. It's their professional responsibility and for your well being. All seem to be very competent and very friendly.
Refills are 30 days max. Dr may write a script to cover 90 days (3 refills) but only 30 at a time.
BMS nurse navigator has become less of a factor over my experience. Some delays in receiving order could have to do with payment by third parties who are involved in your account (copayment, a grant, valid credit card, etc.). Ask the pharmacy intake person each time if payment is clear as they should be able to give you an answer from their screen.
Hopefully this has been helpful and that Camzyos works well for you. I praise and thank God every day for the incredible brains that invented it, and the entire team (although not perfect) He has placed in my life to help me get it! All is good! Persevere and try to be positive and at Peace.

Jump to this post

You are so thoughtful to respond to my message. On the great side, Camzyos is totally working for me. From what I was told by my doctor's office, BMS assigned my specialty pharmacy. In St. Louis, no CVS is qualified to distribute REMS drugs (CVS is my regular pharmacy). My camzyos pharmacy has a $10,000 payment card distributed through BMS which more than covers the cost for one year so payment is not an issue. Aside from this once a month dance I do with the specialty pharmacy, I could not be happier. And I agree with you, how brilliant was it for someone to figure out that OHCM could be prevented by stopping excess miacin from triggering the actin on the heart muscle (basically a miacin inhibitor). All of your information will help others to ask questions ahead of time to avoid delays. I am so glad to hear how well you are doing and for so long!!!

REPLY
1 reply
captainterry | @captainterry | Aug 8, 2023
In reply to @nbs "I have an update on my update - it's a procedural matter regarding renewing a prescription..." + (show)
@nbs

I have an update on my update - it's a procedural matter regarding renewing a prescription with the specialty pharmacy. In my case the pharmacy is called Optum. My next Echo is in three months because it appears that I am responding well to the dose. My doctor's office requested a three month prescription. Things I learned being on the phone forever with Optum: Camzyos is not allowed to be a three month prescription only a 30 day prescription. Every month I have to call in the prescription (since there is no change) NOT the doctor's office! They said that was because it is going to a home address. I can only call in when I have a 7 day supply left or less.

My doctor's office was not aware of this. I have no idea if this is a Restriction Prescription pharmacy rule but the only way I found out why my medicine was going to be delayed (which I fixed) was/is by calling the pharmacy and knowing what questions to ask. I have no idea if this is true for everyone or only Optum pharmacy. I have had so many shipping issues with Optum that I have called them every time I was told by my doctor's office that a prescription was being sent and each month it has been something. So be your own advocate. To me, it seems like they do not communicate with the doctor's office. What is most frustrating is that my doctor is chairman of Washington University's cardiology dept. and his department was part of the group involved with the trials for this drug and they are still involved. Sorry for being so longwinded but I recall others have had delivery issues in the past.

Jump to this post

I have been on Camzyos for over a year. In fact, I started this string in the beginning when I was trying to get my first prescription. Here are my thoughts on your post.
CVS Specialty Rx has never dropped the ball.
They send email reminders each month and ship express 1 to 3 days to home or local CVS ..... your choice.
You must have fewer than 10 pills on hand in order for them to ship.
Yes you call Rx every month and talk briefly to an intake person and then transferred to their Specialty Pharmacist who asks the same safety questions each time. It's their professional responsibility and for your well being. All seem to be very competent and very friendly.
Refills are 30 days max. Dr may write a script to cover 90 days (3 refills) but only 30 at a time.
BMS nurse navigator has become less of a factor over my experience. Some delays in receiving order could have to do with payment by third parties who are involved in your account (copayment, a grant, valid credit card, etc.). Ask the pharmacy intake person each time if payment is clear as they should be able to give you an answer from their screen.
Hopefully this has been helpful and that Camzyos works well for you. I praise and thank God every day for the incredible brains that invented it, and the entire team (although not perfect) He has placed in my life to help me get it! All is good! Persevere and try to be positive and at Peace.

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Aug 7, 2023
In reply to @nbs "I have an update on my update - it's a procedural matter regarding renewing a prescription..." + (show)
@nbs

I have an update on my update - it's a procedural matter regarding renewing a prescription with the specialty pharmacy. In my case the pharmacy is called Optum. My next Echo is in three months because it appears that I am responding well to the dose. My doctor's office requested a three month prescription. Things I learned being on the phone forever with Optum: Camzyos is not allowed to be a three month prescription only a 30 day prescription. Every month I have to call in the prescription (since there is no change) NOT the doctor's office! They said that was because it is going to a home address. I can only call in when I have a 7 day supply left or less.

My doctor's office was not aware of this. I have no idea if this is a Restriction Prescription pharmacy rule but the only way I found out why my medicine was going to be delayed (which I fixed) was/is by calling the pharmacy and knowing what questions to ask. I have no idea if this is true for everyone or only Optum pharmacy. I have had so many shipping issues with Optum that I have called them every time I was told by my doctor's office that a prescription was being sent and each month it has been something. So be your own advocate. To me, it seems like they do not communicate with the doctor's office. What is most frustrating is that my doctor is chairman of Washington University's cardiology dept. and his department was part of the group involved with the trials for this drug and they are still involved. Sorry for being so longwinded but I recall others have had delivery issues in the past.

Jump to this post

What an ordeal @nbs! Jeesh...
You have had quite a frustrating time just trying to keep up with not only the pharmacy's rules, that make little sense, but also the lack of communication to your doctor. We have a new member, @whidbey, who also just began a week ago on Camzyos thru University of Washington. Sharing your information may help them prepare better. The good news is you are doing so well. Yay! But the stress of always having to stay on top of every little thing must make you a little crazy. I'm glad you were able to vent here on Connect. Hang in there!

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