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.

@starbuck41

Sorry guys for the lengthy delay in updating my Camzyos journey.
So here it is
Weight 266.4
Ht 6’3
Age 59
So a couple things happened, the VA failed to get an echo cardiogram done on time so they didn’t send medication, that has since been remedied I received a 5 day dose after not taking it for several days, I will once again start my daily routine tomorrow;
Echo revealed that my gradient had decreased slightly even after not taking the meds for about 4 days. Cardiologist exam revealed nothing abnormal (side effects) I have not had any dietary changes
My blood pressure was 137/88..
Update; a few days ago I had lasik surgery done, results seem to be good but it’s gonna be a few weeks on that:
Still without taking meds for several days, no out of breath moments, and still I must admit my daily quality of life is better, did take a trip up to the mountains 10,ooo feet, no shortness of breath, dizziness or heart palpitations, I will start my 5mg dose tomorrow. My loyal sidekick Murphy is doing his best to be a “good boy “ lol.
I have also been prescribed
50mg motropolol daily
And a cholesterol med
Metformin 500mg daily
Oxycodone 10/325 as needed

I promise I’ll be doing the daily update now that it’s going to be a non issue with refills. I’m headed to Texas next week for a funeral but I’ll make time.
Until tomorrow my friends
David

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Oh shoot! That must have been super frustrating, David.
@hansj had a similar experience and he started going backwards. I am so glad to hear you didn't suffer any terrible effects of falling through the cracks with the VA. Grrr.😡
I'm really glad to get an update on Murphy too. Good boy!
And you made a trip up over 10,000 feet too!
Side note: I had lasik surgery too. But a long time ago. It was like a miracle. But I needed reading glasses right away. Then I had a stroke last May and lost my sight in my left eye...so for about 20 years I was happy to see far away so clearly.
I'm sorry you have to attend a memorial service. You have a lot going on. Hope you are taking care of your mental/emotional side too. I know guys are not real keen on feelings and such. But it is important. Your HCM group is here for you 🙂
Take care Sir.
Keep in touch...

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@karukgirl

Dang.
Well, I wish I could give you an example, but I have no experience with Camzyos. @kelliw and @hansj have a few months on you and I know they have been so willing to share their experiences...let's see if we get them to chime in about what to look out for in the first week. I think @starbuck41 was pretty active his first couple of weeks as well. It seems that we all are so unique and individual, no two people are alike and therefore probably we can't say "this is what to expect" the first week or so. I hope you are feeling calm, resolving to keep your positive attitude, and know you are already stronger than you thought you were!
It's a journey you are on...and each day may be different. Praying for peace and only good effects @jaymaysea.

Jump to this post

Sorry guys for the lengthy delay in updating my Camzyos journey.
So here it is
Weight 266.4
Ht 6’3
Age 59
So a couple things happened, the VA failed to get an echo cardiogram done on time so they didn’t send medication, that has since been remedied I received a 5 day dose after not taking it for several days, I will once again start my daily routine tomorrow;
Echo revealed that my gradient had decreased slightly even after not taking the meds for about 4 days. Cardiologist exam revealed nothing abnormal (side effects) I have not had any dietary changes
My blood pressure was 137/88..
Update; a few days ago I had lasik surgery done, results seem to be good but it’s gonna be a few weeks on that:
Still without taking meds for several days, no out of breath moments, and still I must admit my daily quality of life is better, did take a trip up to the mountains 10,ooo feet, no shortness of breath, dizziness or heart palpitations, I will start my 5mg dose tomorrow. My loyal sidekick Murphy is doing his best to be a “good boy “ lol.
I have also been prescribed
50mg motropolol daily
And a cholesterol med
Metformin 500mg daily
Oxycodone 10/325 as needed

I promise I’ll be doing the daily update now that it’s going to be a non issue with refills. I’m headed to Texas next week for a funeral but I’ll make time.
Until tomorrow my friends
David

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@jaymaysea

Unfortunately, probably not. I can send an email using the portal. I can also send a message to the nurse navigator. But, I doubt I will get a response over the weekend.

Can you give me some examples of situations that could could up? I have been on the lookout for dizziness. But, I am not sure what else could occur.

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Dang.
Well, I wish I could give you an example, but I have no experience with Camzyos. @kelliw and @hansj have a few months on you and I know they have been so willing to share their experiences...let's see if we get them to chime in about what to look out for in the first week. I think @starbuck41 was pretty active his first couple of weeks as well. It seems that we all are so unique and individual, no two people are alike and therefore probably we can't say "this is what to expect" the first week or so. I hope you are feeling calm, resolving to keep your positive attitude, and know you are already stronger than you thought you were!
It's a journey you are on...and each day may be different. Praying for peace and only good effects @jaymaysea.

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Unfortunately, probably not. I can send an email using the portal. I can also send a message to the nurse navigator. But, I doubt I will get a response over the weekend.

Can you give me some examples of situations that could could up? I have been on the lookout for dizziness. But, I am not sure what else could occur.

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@jaymaysea

I was blessed to have been referred to a cardiologist who specializes in HCM and is an advocate of Camzyos. That said, when I followed up with my regular cardiologist, who referred me to the specialist, she told that she didn’t know anything about the drug, didn’t understand how it worked, and thought I was headed to open heart surgery. It made a scary decision about whether to take the drug even scarier.

This group gave me the comfort to move forward. I am on 5 day. So far so good. I have not noticed a change yet-positive or negative.

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I'm glad you are feeling good after five days...and thank you for sharing that information about your regular cardiologist being honest about not knowing or understanding anything about Camzyos. It was the right thing to do to get you in to see a specialist. Will you be able to stay in contact with the cardiologist over the weekend should any situations come up?

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@nanakpm

Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this site, I was shocked when my cardiologist suddenly blurted out "you need open heart surgery" when I went to talk to her about Camzyos. I am sure there is a better way to share that opinion. She did not recommend Camzyos because it is new. Yes - it does take courage to be in the forefront of trying a new drug. And it is an adjustment for physicians to embrace a new paradigm of treating HOCM. If indeed my kids have inherited the gene, I am happy to contribute to knowledge about a non-surgical intervention. Not everyone has access to surgeons who have the experience and track record of doing myectomies successfully so Camzyos may be a safer treatment for many. I was diagnosed about 7 years ago, having had a bout of viral myocarditis 3 years earlier. Managed on a calcium channel blocker and then added Rythmodan. I am fortunate that I live in a place with world class expertise in HCM (Toronto) including an excellent surgeon who specializes in myectomy. And even more fortunate that my husband, a professor of medicine, saw reference to mavacamten in the literature, and encouraged me to explore it as an option. The doctors at the HCM clinic here were not offering it a few months ago (January), and recommended open heart surgery. but I think they are now offering Camzyos as an option. I don't know how patients find out about it unless they read medical literature, or have doctors who are open to trying it.

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I was blessed to have been referred to a cardiologist who specializes in HCM and is an advocate of Camzyos. That said, when I followed up with my regular cardiologist, who referred me to the specialist, she told that she didn’t know anything about the drug, didn’t understand how it worked, and thought I was headed to open heart surgery. It made a scary decision about whether to take the drug even scarier.

This group gave me the comfort to move forward. I am on 5 day. So far so good. I have not noticed a change yet-positive or negative.

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@karukgirl

How wonderful you live in an area with such great access to HCM experts! And you have an inside track with your husband's expertise. There are several others in this community from Canada as well, who have recently started Camzyos. @hansj for example has done really well. If you get some time, read the posts on here. Hopefully you will learn more from people who are on the same pathway as you.
Viral myocarditis? Yikes!! That must have been very scary 😮 I hope you are doing well now except for HOCM. Has your cardiologist been impressed with your test results? Did your LVOT pressures normalize?

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In reply to your question, I have only had one follow-up echocardiogram. It showed no change in gradient, if that is what you are referring to. She is glad that my symptoms have improved, and does not expect to see a change in the gradient so soon, especially in an older patient (I'm 74). Next echo is end of the this month. My expectation is no change in gradient for a few months, and perhaps will have to go on a higher does of Camzyos after the 4-month mandatory period on the lowest dose.

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@elmore71111

I truly have such a wonderful team in place, but it took a very long time to get to a place where I can say that. My doctors are so thorough and careful and I feel so blessed to have each of them. I am very scared about starting the new medication, but for the first time, I feel hopeful, I feel like a plan is in place with a backup plan as well and for so long I felt like everyone kept telling me all the dangers and I heard many ‘I don’t knows’, I kind of felt like I was waiting to die, now I see the wheels spinning and movement is happening, so while on one hand I am terrified, on the other I am so hopeful and excited. I just received the order for the camzyos on Tuesday and they told me that it will take about a week or two before I have it on hand, with getting insurance approval and all. So I haven’t started it yet, but hopefully very soon! 😊

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That is awesome! It is a HUGE deal having a great team working with you. I don't know about what happened in your case before this, but I can tell you that in my case I was misdiagnosed for several years and it took my murmur going to 5/6 before my FP insisted the cardiologist do an echo and look for something life threatening. Even then he got it wrong, but after I sought a second and third opinion with the top Centers of Excellence, Mayo got it right the first time. I was in shock that I was being told I needed open heart surgery. But relieved that at least I knew what was wrong. I was told to drink more water. That's why I was so short of breath. So wrong! Anyway, I hope you come back and share on here how it's going. There are some great members here who are so warm and kind, and I am certain they would love to encourage you as you begin. It's scary. Not going to lie. But you are in the right place here on Mayo Connect to learn about others and share information. Praying for only good results 🙂

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@karukgirl

Rebecca/@elmore71111, Welcome aboard! I am so happy to hear that being able to read about all these shared experiences has helped you make decisions about your future. It's a wonderful place, full of so much information. I know it must be very emotional thinking about not only having HOCM, but now needing to begin using a new drug that hasn't been around very long. If you have been reading on here, you probably have read that a lot of members have had terrific results that have changed their lives. Some have not been so lucky. I hope for you, that you are able to tolerate Camzyos and get your life back. It is really important to be followed by a doctor who is experienced in treating HCM. Do you know if your doctor is experienced in this disorder? Have you started on Camzyos?

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I truly have such a wonderful team in place, but it took a very long time to get to a place where I can say that. My doctors are so thorough and careful and I feel so blessed to have each of them. I am very scared about starting the new medication, but for the first time, I feel hopeful, I feel like a plan is in place with a backup plan as well and for so long I felt like everyone kept telling me all the dangers and I heard many ‘I don’t knows’, I kind of felt like I was waiting to die, now I see the wheels spinning and movement is happening, so while on one hand I am terrified, on the other I am so hopeful and excited. I just received the order for the camzyos on Tuesday and they told me that it will take about a week or two before I have it on hand, with getting insurance approval and all. So I haven’t started it yet, but hopefully very soon! 😊

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@elmore71111

Hi, my name is Rebecca and I just recently was told that I will be started on camzyos. I have been so scared about this new step in my journey, but reading everyone’s comments on here is so encouraging. I know I have not introduced myself before this but I wanted to say a true heartfelt thank you to everyone in here, your wisdom, experiences, and words of encouragement to each other has helped me so much!

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Rebecca/@elmore71111, Welcome aboard! I am so happy to hear that being able to read about all these shared experiences has helped you make decisions about your future. It's a wonderful place, full of so much information. I know it must be very emotional thinking about not only having HOCM, but now needing to begin using a new drug that hasn't been around very long. If you have been reading on here, you probably have read that a lot of members have had terrific results that have changed their lives. Some have not been so lucky. I hope for you, that you are able to tolerate Camzyos and get your life back. It is really important to be followed by a doctor who is experienced in treating HCM. Do you know if your doctor is experienced in this disorder? Have you started on Camzyos?

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