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!

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walkinggirl | @walkinggirl | Apr 12 10:40am
In reply to @deanna529 "Probably people don't want to share that information. LOL I shouldn't say it did not help....just..." + (show)
@deanna529

Probably people don't want to share that information. LOL
I shouldn't say it did not help....just not enough. I traveled for top doctors at UPENN and consulted with several doctors before I made the decision. Remember this was 2017. HCOM was pretty rare back then. I think it has come to light more recently. I remember even at that hospital a lot of people never heard about it and wanted to hear my heartbeat. If I remember correctly, the numbers were 1 in 500 people had it. It seems to be much more prevalent now.
I was told at one hospital not to let just anyone operate on me....To do my homework, which I did.
The way I see it is I got a few more years than expected. Every case is different. I took a chance and would do it again if I had to. But today new drugs are coming out all the time. So If the surgery can extend your life, go for it. That is after you try new drugs...that were not available to me in 2017. Good luck to everyone.

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Good comment, Deanna. When I was diagnosed with HCM, neither I nor anyone I knew ever heard of it. I think HCOM as a diagnosis is fairly new, as a condition it probably has been around for generations. I, too, was the heartbeat demonstration - glad I could help out. More is learned every day and in some places, young athletes are screened.

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mspope111 | @mspope111 | Apr 15 12:37am
In reply to @karen317 "I am karen317 I wrote in a year ago . I thought I would give you..." + (show)
@karen317

I am karen317 I wrote in a year ago . I thought I would give you an update. I am still doing very well on the Camzyos. I also was very hesitant about taking the medications especially with the risks. My personal thought was I wasn’t living much of a life wanting to nap all the time so it was well worth the risk. Fast forward I have been on the medication for almost 2 years now . I am still doing really well . My drs and the echo cardio gram crew are all amazed at what they see in my tests . Main thing I feel better I am able to do things I would not of been able to before the medication. Right now I am babysitting for my 3year old granddaughter and 6 month old twin grand babies every week day. I also am taking my elderly mom to physical therapy 2times a week and her to her dr appointments . I am exhausted at night but I am able to help my loved ones. I know there is no way I could be doing this without Camzyos . I just want to say to anyone thinking about trying it and your cardiologist feels you are a candidate to really think about it and weigh your pros and cons . I am so thankful for the Camzyos.
P.s. I also think getting the echos every 3 mos gives the drs and myself comfort in how I am doing . We will know right away and take the right steps

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Hi Karen,
I am on month 2 of Camzyos. I went from 257 LVOT down to 57. Still on 3 blood pressure meds and still tired with naps. Hopefully this will improves. Did it improve for you right away or over time? Thanks.

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1 reply
nanakpm | @nanakpm | Apr 15 7:56am
In reply to @mspope111 "Hi Karen, I am on month 2 of Camzyos. I went from 257 LVOT down to..." + (show)
@mspope111

Hi Karen,
I am on month 2 of Camzyos. I went from 257 LVOT down to 57. Still on 3 blood pressure meds and still tired with naps. Hopefully this will improves. Did it improve for you right away or over time? Thanks.

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Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I felt better soon after starting Camzyos - more energy, less angina, fewer naps. But the LVOT gradient didn’t come down. My dr wanted me to stop Camzyos and have surgery. I persisted and asked to try higher dose instead. After 6 months the LVOT started to come down. I started on highest dose in November and by January the LVOT dropped from 119 to 58. By April this year it’s down to 7. I think some of us take longer to respond. If you’re feeling ok, stay with it! Great to hear about other people’s response. Thanks to all of you.

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2 replies
manuelpo | @manuelpo | Apr 15 3:09pm
In reply to @nanakpm "Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I..." + (show)
@nanakpm

Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I felt better soon after starting Camzyos - more energy, less angina, fewer naps. But the LVOT gradient didn’t come down. My dr wanted me to stop Camzyos and have surgery. I persisted and asked to try higher dose instead. After 6 months the LVOT started to come down. I started on highest dose in November and by January the LVOT dropped from 119 to 58. By April this year it’s down to 7. I think some of us take longer to respond. If you’re feeling ok, stay with it! Great to hear about other people’s response. Thanks to all of you.

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@nanakpm thank you for your advice for I was planning to do the same thing if I reach the same situation you have just increase the dosage and NO open heart surgery. My symptoms improved a lot but I do not know about my gradient till my first echo is done this coming 20th of April.
I do not mind even for maintenance be on camzyos for the rest of my life for it is worth it. My insurance covers that medicine even though that is an insurance I bought by myself and I do not work anymore for I took early retirement.

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peggynurse | @peggynurse | Apr 15 5:11pm
In reply to @nanakpm "Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I..." + (show)
@nanakpm

Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I felt better soon after starting Camzyos - more energy, less angina, fewer naps. But the LVOT gradient didn’t come down. My dr wanted me to stop Camzyos and have surgery. I persisted and asked to try higher dose instead. After 6 months the LVOT started to come down. I started on highest dose in November and by January the LVOT dropped from 119 to 58. By April this year it’s down to 7. I think some of us take longer to respond. If you’re feeling ok, stay with it! Great to hear about other people’s response. Thanks to all of you.

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great to hear.
what is your current dose?

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1 reply
nanakpm | @nanakpm | Apr 15 6:18pm
In reply to @peggynurse "great to hear. what is your current dose?" + (show)
@peggynurse

great to hear.
what is your current dose?

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I started at 5mg, increased to 10mg after a few months, and now on 15mg which is apparently the highest dose currently approved. I was told that if the gradient did not come down within 4 months, it wouldn't work. I asked to try the increased dose of 10mg and the gradient came down slightly. Much bigger drop in gradient on the 15 mg.
I did the pharmacogenetic test (through a private provider) which showed I am a rapid metabolizer of camzyos.

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dwc62 | @dwc62 | Apr 19 10:38pm
In reply to @katiekins "Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the..." + (show)
@katiekins

Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the side effects stated severe headaches, aching muscles, eye disturbance.... etc....I was on Veramamil at the same time could it have been that who knows.....now April having have developed Atrial Fibrillation during the past month... Never ever had this before.....Seeing my cardiologist on the 23 rdApril we shall see...I am delighted for all of those that have had their lives changed by this drug...sadly I am not one of those and am looking at septal myectomy soon.
Keep well and safe all....

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I was reading some information on HCM it stated Atrial Fib and HCM are connected. You may want to look into it.

David

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1 reply
katiekins | @katiekins | Apr 20 4:37am
In reply to @dwc62 "I was reading some information on HCM it stated Atrial Fib and HCM are connected. You..." + (show)
@dwc62

I was reading some information on HCM it stated Atrial Fib and HCM are connected. You may want to look into it.

David

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Thank you David for your comments. Yes I agree with you upon research but have had HOCM for around 15 yrs and pretty much symptom free (lately a few) but have never had Atrial fibrillation until I started Mavacamten (also a known side effect). I have had A F for around a month now and stopped Mavacamten about a month ago AF has stopped. Can only assume it’s the drug disappointingly. Very happy for those that have had their lives turned around. Regards

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1 reply
dwc62 | @dwc62 | Apr 22 10:51am
In reply to @katiekins "Thank you David for your comments. Yes I agree with you upon research but have had..." + (show)
@katiekins

Thank you David for your comments. Yes I agree with you upon research but have had HOCM for around 15 yrs and pretty much symptom free (lately a few) but have never had Atrial fibrillation until I started Mavacamten (also a known side effect). I have had A F for around a month now and stopped Mavacamten about a month ago AF has stopped. Can only assume it’s the drug disappointingly. Very happy for those that have had their lives turned around. Regards

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Thank god you got off the Mavacamten, I have not had too many side effects (knock on wood).

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1 reply
katiekins | @katiekins | Apr 22 11:28am
In reply to @dwc62 "Thank god you got off the Mavacamten, I have not had too many side effects (knock..." + (show)
@dwc62

Thank god you got off the Mavacamten, I have not had too many side effects (knock on wood).

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Have you had any side effects at all? My cardiologist said to me that anyone with an inherited heart condition (i.e. HOCM) will fare better on Mavacamten. I don’t have the inherited type so maybe that’s why. Keep well my friend.

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