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.

nbs | @nbs | Jul 10, 2023

I just had my second echocardiogram being on Camzyos. I started with a LVOT gradient of 100mmHG and my EF was 79. After taking 5 mg for a 4 weeks my LVOT gradient dropped to 16mmHg and my EF was 73. I was changed to 2.5 mg camzyos for weeks 5-8 and today my LVOT gradient increased to 21mmHG and my EF was 67. All great news as I would have been taken off the drug if my LVOT was below 20. I am feeling great and fortunate that I am reacting well to camzyos so far. As many of you know, the opposite reaction is frustrating and can be frightening.

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1 reply
jaymaysea | @jaymaysea | Jul 10, 2023

Good info to know. How many mg?

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darryl | @darryl | Jul 10, 2023
In reply to @jaymaysea "Welcome to the group @rover27. The first week I felt nothing. Then during the second week,..." + (show)
@jaymaysea

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

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I took Metoprolo and it made me super dizzy so be careful I stopped taking it after a week

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1 reply
rover27 | @rover27 | Jul 3, 2023
In reply to @jaymaysea "Welcome to the group @rover27. The first week I felt nothing. Then during the second week,..." + (show)
@jaymaysea

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

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Thanks for reply. The racing heart type feeling is better, but still dizzy and low energy. No other med should be a problem. I will wait another couple of days. Have echo on the 12th.

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kelliw | @kelliw | Jul 2, 2023
In reply to @rover27 "I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days..." + (show)
@rover27

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

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Hi Rover27- I have been on Camzyos since March 30th and have had very good results. I would definitely call your cardiologist. Maybe the 2.5 might be better for you to start? He/she would know better. I had dizziness for about 2 weeks, off and on the 2-3rd week in. It went away. Sometimes, when I lay on my left side I get a couple of sharp pains, which kind of scared me, but it hasn't happened for awhile. I am taking my BP every morning too and writing it down as well as how I am feeling each day, in that gray journal BMS sent in the welcome pack. I started out on 5mg and they lowered it to the 2.5mg because my heart responded so well to Camzyos. I have noticed I am feeling tired in the afternoons, since going down to 2.5, but other than that I feel great. I hope things even out for you and you start to feel the benefits!

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kelliw | @kelliw | Jul 2, 2023
In reply to @nbs "Initially I thought I felt better with the 5mg dose but now entering my fourth week..." + (show)
@nbs

Initially I thought I felt better with the 5mg dose but now entering my fourth week taking 2.5mg I feel great. I am able to walk a few miles even in the heat (early in the morning). What I am now not feeling which I did feel with the 5mg dose is sudden fatigue to the point of quickly nodding off. For me, it seems to take about 3 weeks for the effects of each dose to be consistent. My next echo is in a week. I am hoping my LVOT is at 20 or above or there will be a lot of discussing on my part. Since this drug isn't a cure but a prevention, I would assume that being taken off this drug (if my LVOT is below 20) would put me back to where I was before Camzyos.

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Good morning-They wanted to take me off for a month because my LVOT is still at 8, from 75! But my doctor fought it for me and they agreed that the doctor can override the protocol, so if that happens, and you want to stay on, now you know it can be done. 🙂 I did not want to go backwards either!

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jaymaysea | @jaymaysea | Jul 1, 2023

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

REPLY
2 replies
nbs | @nbs | Jun 30, 2023
In reply to @hansj "Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the..." + (show)
@hansj

Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the echo showed I was still getting benefit despite not feeling as amazing as I did on 5mg. The starting dose had brought me right back to "normal" (no wonder I felt so great), protocol requires that they lower it (arg!). I've been on the lower dose for 4 weeks now and while I'm doing okay I've started logging my returning HCM issues (light headed, out of breath) as they occur. I've had to curtail the long walks I was taking Charlie on. The doctor will meet with me in 3 weeks to discuss further, he said he's not opposed to going back to 5mg but is being super caution as he is concerned about me having too much and relaxing my heart too much. So I've gone from feeling terrible for the past 2 years, to feeling amazing for a couple months, and now feeling just okay. I'm going to hang in their for a while but now that I've had a taste of normal life again I'm not willing to put up with a sedentary life style long term, at some point I'll give up and just opt for the surgery and a permanent fix.

Jump to this post

Initially I thought I felt better with the 5mg dose but now entering my fourth week taking 2.5mg I feel great. I am able to walk a few miles even in the heat (early in the morning). What I am now not feeling which I did feel with the 5mg dose is sudden fatigue to the point of quickly nodding off. For me, it seems to take about 3 weeks for the effects of each dose to be consistent. My next echo is in a week. I am hoping my LVOT is at 20 or above or there will be a lot of discussing on my part. Since this drug isn't a cure but a prevention, I would assume that being taken off this drug (if my LVOT is below 20) would put me back to where I was before Camzyos.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 30, 2023
In reply to @rover27 "I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days..." + (show)
@rover27

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

Jump to this post

Hello @rover27, while we wait for other members to chime in, let me welcome you to Mayo Connect! There is a lot of information on this site, so I hope you will take some time to poke around and learn as much as you can. Other members taking Camzyos will be able to respond better than I can, as I had open heart surgery for my HOCM. It sounds like it really works for some people, and others have had issues. Is your cardiologist experienced in treating HOCM? That's really important.

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rover27 | @rover27 | Jun 30, 2023

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

REPLY
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