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 | May 28, 2023
In reply to @kelliw "Good morning-I received a call from my cardiologist last night. He said the protocol is since..." + (show)
@kelliw

Good morning-I received a call from my cardiologist last night. He said the protocol is since my gradient numbers dropped below 20, and everything looks good, he has to back off the medication, so is dropping me from 5mg. to 2.5 mg. This makes me very nervous that I am going to start feeling like hell again. My gradient was at 21 for a long time, then jumped to 75!! That's when I started taking Camzyos. This last ECG showed the gradient was at 8!! I have only been on Camzyos for 60 days, and as you all know am feeling so good! My doctor said we will see how I feel with the lower dose and go from there. Ugh...maybe it is a good thing to take less of this, but we shall see. Has anyone else had this happen? If so, how do you feel now?

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I think we will all be going through what you are. You are six weeks ahead of me. This drug is still in its infancy. Your doctor sounds on top of everything and thank you for keeping us posted.

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Mentor
Debra, Volunteer Mentor | @karukgirl | May 28, 2023
In reply to @kelliw "Good morning-I received a call from my cardiologist last night. He said the protocol is since..." + (show)
@kelliw

Good morning-I received a call from my cardiologist last night. He said the protocol is since my gradient numbers dropped below 20, and everything looks good, he has to back off the medication, so is dropping me from 5mg. to 2.5 mg. This makes me very nervous that I am going to start feeling like hell again. My gradient was at 21 for a long time, then jumped to 75!! That's when I started taking Camzyos. This last ECG showed the gradient was at 8!! I have only been on Camzyos for 60 days, and as you all know am feeling so good! My doctor said we will see how I feel with the lower dose and go from there. Ugh...maybe it is a good thing to take less of this, but we shall see. Has anyone else had this happen? If so, how do you feel now?

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@kelliw, I hope you get a response from another member who has had their dose lowered. I wish I could add my experience, but since I can't I can perhaps say I don't blame you for worrying. Who would want to go back to where you were before? But your doctor sounds like he is following protocol which is what they are supposed to do. That's great that he called you too. It shows you are not falling thru the cracks. And, he is following you very closely, which should bring you some comfort. It sounds like a good thing to me to have the dosage lowered. Is it your understanding that if it works, and you feel fine at the new dose then it appears you are on the right course? Or if it doesn't work on the new dose, then it sounds like he will go back to 5mg? I like @jaymaysea's advice...Stay positive!

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1 reply
kelliw | @kelliw | May 28, 2023
In reply to @karukgirl "@kelliw, I hope you get a response from another member who has had their dose lowered...." + (show)
@karukgirl

@kelliw, I hope you get a response from another member who has had their dose lowered. I wish I could add my experience, but since I can't I can perhaps say I don't blame you for worrying. Who would want to go back to where you were before? But your doctor sounds like he is following protocol which is what they are supposed to do. That's great that he called you too. It shows you are not falling thru the cracks. And, he is following you very closely, which should bring you some comfort. It sounds like a good thing to me to have the dosage lowered. Is it your understanding that if it works, and you feel fine at the new dose then it appears you are on the right course? Or if it doesn't work on the new dose, then it sounds like he will go back to 5mg? I like @jaymaysea's advice...Stay positive!

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Thank you Debra for your words of encouragement. My doctor is on it. I went for a walk yesterday with my husband and dog and towards the end felt really dizzy and like I was going to faint. He went and got the car and picked me up. I've been fine until yesterday. For some reason my blood pressure has been high since I was in my dr's office Thursday-really high yesterday-190/105. Luckily my dr. was on call. He said I didn't have to go to ER and he wants to put me on a BP medicine. He chose one, but then called me back to say he gave it a lot of thought and wants me to do the clonidine patch. I read about clonidine and the possible side effects are gnarly. Ugh-he said if I don't feel good I can take the patch off. I just have to trust that he knows what I need. I thought I was in smooth sailing zone and now all of this! But I am trying to stay positive. I still feel so much better than I did before! 🙂

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | May 28, 2023
In reply to @kelliw "Thank you Debra for your words of encouragement. My doctor is on it. I went for..." + (show)
@kelliw

Thank you Debra for your words of encouragement. My doctor is on it. I went for a walk yesterday with my husband and dog and towards the end felt really dizzy and like I was going to faint. He went and got the car and picked me up. I've been fine until yesterday. For some reason my blood pressure has been high since I was in my dr's office Thursday-really high yesterday-190/105. Luckily my dr. was on call. He said I didn't have to go to ER and he wants to put me on a BP medicine. He chose one, but then called me back to say he gave it a lot of thought and wants me to do the clonidine patch. I read about clonidine and the possible side effects are gnarly. Ugh-he said if I don't feel good I can take the patch off. I just have to trust that he knows what I need. I thought I was in smooth sailing zone and now all of this! But I am trying to stay positive. I still feel so much better than I did before! 🙂

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Whoa! That IS high BP 😮
Does he think it may be a side effect of Camzyos? Have you had high BP before? I hope you get re-checked sooner than later...how scary it must be! Sailing along, doing awesome and then this. Do you think you're anxious about lowering the dose and it may be causing you stress? Have you started the Clonidine patch yet?

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1 reply
kelliw | @kelliw | May 28, 2023
In reply to @karukgirl "Whoa! That IS high BP :o Does he think it may be a side effect of..." + (show)
@karukgirl

Whoa! That IS high BP 😮
Does he think it may be a side effect of Camzyos? Have you had high BP before? I hope you get re-checked sooner than later...how scary it must be! Sailing along, doing awesome and then this. Do you think you're anxious about lowering the dose and it may be causing you stress? Have you started the Clonidine patch yet?

Jump to this post

This morning my BP was 148/102. Just took it and it was 176/100. Just picked up the clonidine patches. Will put on tomorrow. My BP is usually around 154/80, so definitely higher. My dr. said maybe it is higher because my heart hasn't worked for so long, that now it is high horsepower mode? I haven't heard of that before, but the patch should help. I feel better today-no dizziness and my chest doesn't feel tight. Went to church and took my mother-in-law to lunch for her bday. Going to try to fit in 9 holes of golf soon. Thank you so much for being there to bounce things off of! 🙂

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | May 28, 2023
In reply to @starbuck41 "Day 13 5mg at 0807 Weight 267 20oz coffee and a couple cookies for breakfast, 12oz..." + (show)
@starbuck41

Day 13
5mg at 0807
Weight 267
20oz coffee and a couple cookies for breakfast, 12oz Diet Coke, 28oz zero Gatorade
500mg metformin and a pain pill
Still no side effects and I feel great, sleeping good, and feeling normal..
Last night I feasted on sushi for dinner, Murphy had steak
Tonight I’m gonna have a Diet Coke
A ribeye and the last of those Costco devil chocolate chip cookies, some sautéed brussle sprouts and 500 mg metformin.
Until tomorrow I wish you all good health and I’ll see ya tomorrow
Dave

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Hey @starbuck41, how's it going? Haven't heard from you in awhile...you are what now? Day 17? You and Murphy have plans for Memorial Day? Everything going along good?

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Mentor
Debra, Volunteer Mentor | @karukgirl | May 28, 2023
In reply to @kelliw "This morning my BP was 148/102. Just took it and it was 176/100. Just picked up..." + (show)
@kelliw

This morning my BP was 148/102. Just took it and it was 176/100. Just picked up the clonidine patches. Will put on tomorrow. My BP is usually around 154/80, so definitely higher. My dr. said maybe it is higher because my heart hasn't worked for so long, that now it is high horsepower mode? I haven't heard of that before, but the patch should help. I feel better today-no dizziness and my chest doesn't feel tight. Went to church and took my mother-in-law to lunch for her bday. Going to try to fit in 9 holes of golf soon. Thank you so much for being there to bounce things off of! 🙂

Jump to this post

Hmm🤨I am not a doctor, I don't portray one on TV and I didn't stay in a Holiday Inn Express, so I can't comment on his comment...but it kinda makes sense. I guess? If the drug is supposed to decrease the myosin, enable the heart to relax and then beat more free, then maybe? It's maybe not used to being "normal", therefore, now with help from Camzyos, it's acting more normal and I just don't know! I'm glad you're better today. I hope you enjoyed church, lunch and golf. Life can be difficult and those special moments make the difficult ones easier to deal with. Having a heart issue, like we do, is hard to deal with sometimes. Anxiety creeps in, doubt, and wonder...but God is in control. Always and forever! I'm honored to be a sounding board for you 🙂

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HansJ | @hansj | May 29, 2023
In reply to @kelliw "Good morning-I received a call from my cardiologist last night. He said the protocol is since..." + (show)
@kelliw

Good morning-I received a call from my cardiologist last night. He said the protocol is since my gradient numbers dropped below 20, and everything looks good, he has to back off the medication, so is dropping me from 5mg. to 2.5 mg. This makes me very nervous that I am going to start feeling like hell again. My gradient was at 21 for a long time, then jumped to 75!! That's when I started taking Camzyos. This last ECG showed the gradient was at 8!! I have only been on Camzyos for 60 days, and as you all know am feeling so good! My doctor said we will see how I feel with the lower dose and go from there. Ugh...maybe it is a good thing to take less of this, but we shall see. Has anyone else had this happen? If so, how do you feel now?

Jump to this post

Hi Kelli,
I just heard from the pharmacy this morning that my dosage is also being dropped to 2.5mg for the refill coming tomorrow.
I currently feel great and had an echo last friday and assumed I'd just be continuing with 5mg. I'm a little nervous about the drop in dose and hope it's still going to keep working for me. I have left message for the doctor to find out why it's being lowered. I certainly don't want to go back to feeling terrible and not being able to walk any distance.

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kelliw | @kelliw | May 29, 2023

Hi Hans-thank you so much for your response! I am really bummed because I don't want to start feeling horrible again either. I know-we both feel great with things the way they are! It's only been 62 days-but maybe it's better for us to be on the lowest dosage, as long as we keep feeling great. If not, my doctor said I can go back up. He said he had to lower the dose because my gradient numbers are so good now. Anything under 20 needs to be dropped down to 2.5. Please keep in touch and let me know how you are feeling when you switch. I will do the same. I should get the new prescription on Wednesday, I think.

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1 reply
nbs | @nbs | May 29, 2023

I read this article in January before I had been approved to take Camzyos and before I changed to a doctor from Washington U's cardiology department. This is very helpful for understanding this drug (especially the first three paragraphs).

https://www.barnesjewish.org/Curiosus-Mag/Article/ArtMID/6756/ArticleID/2281/NEW-DRUG-POSITIVE-RESULTS-FOR-HYPERTROPHIC-CARDIOMYOPATHY
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