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 | Jun 10, 2023
In reply to @avcowie "I’ve been taking Camzyos for two weeks now. I had no episode today but my ears..." + (show)
@avcowie

I’ve been taking Camzyos for two weeks now. I had no episode today but my ears ringing is driving me nuts.
My main concern is that this drug is a treatment, not a cure. I feel better today in general and it will help me improve my physical health in preparation for surgery. I’m going to talk to my cardiologist on Monday and request rescheduling my surgery date.

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Hi @avcowie, is tinnitus a known side effect of Camzyos? That would make anyone crazy 😮
I'm glad you are feeling better and see your doctor soon. Have you thought of the questions you want to ask the cardiologist? When is the surgery scheduled that you want to reschedule?

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 10, 2023
In reply to @starbuck41 "Okay so it’s been a few days since I posted.. so here’s a recap. It’s day..." + (show)
@starbuck41

Okay so it’s been a few days since I posted.. so here’s a recap.
It’s day 20
Weight 266.7
5mg has been abnormally consistent at about 0807am every day, within minutes or seconds of previous days.
I’m on no specific diet but I’m prone to eat high protein in the from of Steak and always coffee in the am.
So labs..
Cholesterol was borderline high
Glucose was 112… pre diabetes
Everything else was in normal range
Blood pressure 102/86.. I have not taken beta blockers or bp meds since starting Camzyos. Still no outward side effects.. sleeping solid.. cardiologist appointment is tomorrow..will report back what he says..
Tonight’s menu
Ribeye, baked potatoe, ice tea, and some kinda green vegetable.. me and Murphy are gonna have steak n eggs for lunch..
Until tomorrow y’all have a wonderful day and stay safe
Dave

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Hey @starbuck41 , what did you learn from the cardiologist after your last visit? How is Murphy? Is he keeping an eye on you?

REPLY
jaymaysea | @jaymaysea | Jun 12, 2023

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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3 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 12, 2023
In reply to @jaymaysea "Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey..." + (show)
@jaymaysea

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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While we wait for others to chime in on their experience and if they were taking Diltiazem at the same time, I just wanted to say I am thinking of you and hoping the best for you getting back your life! When do you see your doctor again?

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jaymaysea | @jaymaysea | Jun 12, 2023

I don’t actually see my Dr. until the end of July. But I have access to him through the patient portal. My monthly echos have been scheduled for 7/10, 8/7, and 9/4. I sent my Dr. a note this morning asking why he wanted me to take the Diltiazem for the next two weeks when it is counter indicated.

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1 reply
nbs | @nbs | Jun 12, 2023
In reply to @jaymaysea "Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey..." + (show)
@jaymaysea

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

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I had to get off my calcium blocker - Verapamil - two weeks before starting Camzyos.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 12, 2023
In reply to @jaymaysea "I don’t actually see my Dr. until the end of July. But I have access to..." + (show)
@jaymaysea

I don’t actually see my Dr. until the end of July. But I have access to him through the patient portal. My monthly echos have been scheduled for 7/10, 8/7, and 9/4. I sent my Dr. a note this morning asking why he wanted me to take the Diltiazem for the next two weeks when it is counter indicated.

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Hmm...🤨 I would be a wee bit concerned as well. Good thinking on your part to contact him for confirmation...Did you ask him to verify this is correct? After you are the "trust by verify" member 😉

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jaymaysea | @jaymaysea | Jun 12, 2023

I sent an email this morning and I ask him the specific question. I have already gotten a response. He indicated that it takes about two weeks for Camzyos to build up in your blood system, so he wants to make sure I have coverage during that time.

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jaymaysea | @jaymaysea | Jun 12, 2023
In reply to @nbs "I had to get off my calcium blocker - Verapamil - two weeks before starting Camzyos." + (show)
@nbs

I had to get off my calcium blocker - Verapamil - two weeks before starting Camzyos.

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That makes a lot of sense to me. How long did it take you to feel the affect of the Camzyos? Did you have any side effects?

Thanks so much for responding.

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1 reply
nbs | @nbs | Jun 12, 2023
In reply to @jaymaysea "That makes a lot of sense to me. How long did it take you to feel..." + (show)
@jaymaysea

That makes a lot of sense to me. How long did it take you to feel the affect of the Camzyos? Did you have any side effects?

Thanks so much for responding.

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That is a good question. I think Camzyos starts working very quickly. Within the first week I felt I was handling hills and the stairs a bit better. Two weeks I definitely felt that it was working and each successive week there has been progress. It has been exactly one month and I am back to my morning walk (2.5 - 3+ miles) at a very good pace and able to walk up hills without slowing down or stopping. I can go up and down stairs all day long. However, after two weeks I started to feel tired to the point of feeling like I needed a nap in the early afternoon. I have only been on it for a month and my dose has just been changed from 5 mg to 2.5 mg which is probably a good idea. The Verapamil that I was on has the same drug interaction concerns as your Diltiazem.

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