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 | Jul 19, 2023
In reply to @hansj "Hello group! I thought I'd send an update on my journey. I met with my doctor..." + (show)
@hansj

Hello group!
I thought I'd send an update on my journey. I met with my doctor yesterday and we had a good discussion about the impact to my quality of life since dropping to 2.5mg. He has agreed to put me back on 5mg as this was clearly working well for me. I'm looking forward to feeling great again.

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I am so glad your doctor listened to you and you were able to make your needs known. This is not a one-size-fits-all deal, and being able to have input, be heard, and responded to in a positive way must feel like a big win @hansj!
This up and down, back and forth stuff must be frustrating for you! How long after going back on the 5mg will you see your doctor again?

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1 reply
kelliw | @kelliw | Jul 18, 2023

Good morning Everyone! I just got back from Steamboat Springs, CO, last night, and had THE BEST time! I was totally fine in the altitude (I went from sea level), was able to go up to 9500 feet, on the gondola for sunset happy hour, went tubing down the Yampa river and white water rafting! I am beyond thankful that I have my life back! 5 months ago, this would have been so difficult! Yippee!! I have my echocardiogram this afternoon. I am still feeling very good on 2.5., and this morning my BP was 125/87! It hasn't been that low for quite some time. Yay! 🙂

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1 reply
kelliw | @kelliw | Jul 18, 2023
In reply to @sunnyduke2 "Hello, I’ve been taken Camzyos since June 7. I had my first echocardiogram on July 6...." + (show)
@sunnyduke2

Hello, I’ve been taken Camzyos since June 7. I had my first echocardiogram on July 6. My ejection fraction is functioning at 65 to 70% which is normal for the heart running and my gradient is at 15 so it’s running well. I just still have all the side effects but I’m coping. My second echocardiogram is coming up in a few weeks to see how we’re working I am taking 5 mg.

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That is great news! 🙂

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kelliw | @kelliw | Jul 18, 2023
In reply to @hansj "Hello group! I thought I'd send an update on my journey. I met with my doctor..." + (show)
@hansj

Hello group!
I thought I'd send an update on my journey. I met with my doctor yesterday and we had a good discussion about the impact to my quality of life since dropping to 2.5mg. He has agreed to put me back on 5mg as this was clearly working well for me. I'm looking forward to feeling great again.

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Yay Hans! This is such great news! Thank you for the update! I love how our doctors are able to listen to us and do what is best for us. I have my echo today. 🙂

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HansJ | @hansj | Jul 18, 2023

Hello group!
I thought I'd send an update on my journey. I met with my doctor yesterday and we had a good discussion about the impact to my quality of life since dropping to 2.5mg. He has agreed to put me back on 5mg as this was clearly working well for me. I'm looking forward to feeling great again.

REPLY
2 replies
quinn | @quinn | Jul 18, 2023

Hello all, my name is Joy. I'm so glad I found this group.
When I started Camzyos 5 mg months ago I felt as if I no longer had HOCM. I could even walk up hill a bit and continue walking (mostly flat surfaces) for over an hour. I hadn't achieved this for years. I had and continue to have much more energy than before Camzyos but the HOCM gone feeling did not last. After losing that I asked to move up to 10mg. It has helped me remain productive but I can't predict how I will feel from day to day. Somedays the weakness, pounding, fluttering heart, odd head/body sensation return. I have learned to avoid all but one cup of coffee, large meals, icy drinks, and cannot allow myself to get upset (have had to limit exposure to media). In my case absolutely no alcohol and less bending over (housework, yard) are restrictions that also SEEM to help. I just don't know what to expect day to day. My ECHO numbers are all over the place. In addition to HOCM I have severe mitral valve regurgitation. Camzyos doesn't help with the latter. The good news I want to report is that a wonderful pharmacist, Mark Froelich, with Optum Specialty RX with the Camzyos.rems program, informed me that there is a SSRI, Lexapro, that is NOT contraindicated on Camzyos. I've asked my PCP to verify and prescribe if possible. I am excited that I may be able to control anxiety and depression like I did prior to Camzyos when I was on Prozac. If anyone else has learned that Lexapro is or is not the permitted wile on Camzyos, please respond. Apologies for the length of this.

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1 reply
sunnyduke2 | @sunnyduke2 | Jul 17, 2023

Hello, I’ve been taken Camzyos since June 7. I had my first echocardiogram on July 6. My ejection fraction is functioning at 65 to 70% which is normal for the heart running and my gradient is at 15 so it’s running well. I just still have all the side effects but I’m coping. My second echocardiogram is coming up in a few weeks to see how we’re working I am taking 5 mg.

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1 reply
nanakpm | @nanakpm | Jul 12, 2023
In reply to @nanakpm "Totally agree that we need to be proactive with our doctors. This is a paradigm shift..." + (show)
@nanakpm

Totally agree that we need to be proactive with our doctors. This is a paradigm shift in treating OHCM and it is not comfortable for many physicians.

I’ve had the opposite experience to yours: symptoms improving, more energy and almost no angina. BUT my echocardiogram hasn’t changed. Third one coming up July 27. I’m on 5mg and told my doctor I want to
Increase dose if the gradient does not go down. It’s 130 at rest and 150 on Val salva. But I’m feeling better! My family can see the difference. I’m going to remain optimistic (mixed with anxiety 🤪) for a few more months. I think this drug is amazing and it seems there is great variation in response.

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I really appreciate this group. My doc has one patient on this drug and zero previous experience with it. And much prefers surgical intervention.

It’s so helpful to read about the experience of other patients!! Thank you all.

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kelliw | @kelliw | Jul 12, 2023
In reply to @jaymaysea "He did not tell me the actual number. Just said the gradient was lower and according..." + (show)
@jaymaysea

He did not tell me the actual number. Just said the gradient was lower and according to the algorithm my dosage should be reduced from 5 to 2.5. The 5 mg is not making me feel any better even though the gradient is lower. I did have to do the “bearing down” maneuver. My issue is that my obstruction is only significant upon exertion/exercise. My records show this. But my cardiologist is going by the algorithm which provides that if the gradient is a certain level, then the dosage has to be lowered. Yet, he acknowledged that he does not have to follow that protocol. The written responses I got looked like it was straight out of a text book, with no regard for the actual facts. I am very frustrated; I am not an algorithm. So I am going to 2.5mg. What choice do I currently have? I meet with my cardiologist on the 26th. The journey continues; I wish the road was smoother.

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Push for what you need! My dr found that he didn't have to follow the protocol if it is in my best interest, so he didn't. Plead your case. You are definitely not an algorithm! We are here to cheer you on! 🙂

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kelliw | @kelliw | Jul 12, 2023
In reply to @jaymaysea "Good Morning Camzyos Family, I am on day 31 of taking the drug. The last two..." + (show)
@jaymaysea

Good Morning Camzyos Family,
I am on day 31 of taking the drug. The last two weeks have been uneventful - negative or positive. I am still short of breath upon exertion ( walking and going up starts) and walking and still fatigued. So the drug doesn’t seem to be helping.

I had an echo on Monday. The Dr.s office said my pumping action was good and my gradient had improved. So they want to take me from 5mg to 2.5mg. I pushed back because so far I am not feeling any relief from my HOCM symptoms. I reminded them that it’s my gradient upon exertion that is so bad. At rest, which is the condition during a regular echo, my gradient is not that bad. Heart rate and blood pressure are still elevated. I will see what my cardiologist has to say.

It’s stressful that you have to be your own advocate and so proactive in your health care. Will keep you posted.

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I'm sorry that you are still feeling that way! Stay strong and push for what you need! Don't just take things at what they first say. I would think they would bump you up, not down. It seems to be their "protocol" to move all of us down. I love how you addressed to the Camzyos Family! We are! 🙂 Keep us posted...

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