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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kelliw | @kelliw | Jun 27, 2023
In reply to @jaymaysea "@kelliw that is GREAT news and great information to know in case others have a similar..." + (show)
@jaymaysea

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!

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Thank you! Yes I feel so thankful I have him as my doctor! He is the only doctor in the practice of about 9 others, who is doing the Camzyos journey!

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kelliw | @kelliw | Jun 27, 2023
In reply to @karukgirl "I am SO very happy to get your report today! What a great doctor! I bet..." + (show)
@karukgirl

I am SO very happy to get your report today! What a great doctor! I bet you are feeling much relieved like a weight has been taken off your shoulders. Now you can go on your girls trip and not have this hanging over you like a dark cloud! Thank you for letting us know how it went @kelliw! Blessings abundant to you 🙂

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Thank you, Debra! I am so relieved! He is pretty amazing! Yesterday I reserved 6 spots to tube down the Yampa river on our trip! Going to take the gondola up and have lunch at the lodge, and then do this nice mile walk on one of the trails. I cannot wait, and am beyond thankful that I will be able to do this fun stuff in 2 weeks! 🙂

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jaymaysea | @jaymaysea | Jun 27, 2023

@kelliw that is GREAT news and great information to know in case others have a similar situation. What a blessing to have a cardiologist that is willing to advocate for your best interest.

Enjoy your trip!!!!!

REPLY
2 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 26, 2023
In reply to @kelliw "Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great!..." + (show)
@kelliw

Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great! We talked about my dr.'s phone call regarding the "protocol" that said I need to stop taking Camzyos for a month and how he said no I want to keep her on 2.5 mg. Don't do this to her! She is feeling great! They said OK! They also said a pharmacist cannot override a doctor's orders.
So I talked to the specialty pharmacist today and she sent my prescription. It will be here Wednesday. I have 6 pills left, so will be just fine! Sooo if this happens to you, your doctor can override the protocol for you. I will have another echo next month, not in 3 months, to make sure everything is still fine. Hallelujah! 🙂

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I am SO very happy to get your report today! What a great doctor! I bet you are feeling much relieved like a weight has been taken off your shoulders. Now you can go on your girls trip and not have this hanging over you like a dark cloud! Thank you for letting us know how it went @kelliw! Blessings abundant to you 🙂

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1 reply
kelliw | @kelliw | Jun 26, 2023
In reply to @karukgirl "I'm glad you see him Monday. Did you share your experience with Mayo Connect with him?..." + (show)
@karukgirl

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

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I told him your message today, and thanked him for being my advocate! He said of course! He also said he told another patient about this today! I am the only one in the practice taking this as of now. I hope others can be helped too!

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kelliw | @kelliw | Jun 26, 2023

Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great! We talked about my dr.'s phone call regarding the "protocol" that said I need to stop taking Camzyos for a month and how he said no I want to keep her on 2.5 mg. Don't do this to her! She is feeling great! They said OK! They also said a pharmacist cannot override a doctor's orders.
So I talked to the specialty pharmacist today and she sent my prescription. It will be here Wednesday. I have 6 pills left, so will be just fine! Sooo if this happens to you, your doctor can override the protocol for you. I will have another echo next month, not in 3 months, to make sure everything is still fine. Hallelujah! 🙂

REPLY
1 reply
kelliw | @kelliw | Jun 24, 2023
In reply to @karukgirl "I'm glad you see him Monday. Did you share your experience with Mayo Connect with him?..." + (show)
@karukgirl

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

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I have told him about this group and how awesome it is! 🙂

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 24, 2023
In reply to @kelliw "Thank you! I really feel like the rug has been ripped out from under me. I..." + (show)
@kelliw

Thank you! I really feel like the rug has been ripped out from under me. I am going to Colorado with my best girlfriends in 2 weeks and am so looking forward to feeling great! They better refill my prescription! My doctor is awesome! I will see him Monday and will talk more about all of this then. 🙂

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I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

REPLY
2 replies
kelliw | @kelliw | Jun 24, 2023
In reply to @jaymaysea "Well, I am on day 12. I have not been feeling great since Sunday; sorta off..." + (show)
@jaymaysea

Well, I am on day 12. I have not been feeling great since Sunday; sorta off feeling- a little lightheaded, more fatigued, some increased shortness of breath, blood pressure and heart rates are up.

So, after some back and forth pushing with my cardiologist, who said side effects are rare and did not think my symptoms were caused by Camzyos, he ordered an echo and got me in for it today. He is a Rock
Star, and a major advocate of Camzyos, so when he speaks the hospital jumps. I will report echo findings once I get them,

I hope these symptoms are temporary and the miracle drug will give me a better quality of life. I remain positive and hopeful.

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Good morning-I remember feeling that way about 2 weeks in. Dizzy and fatigued. We are so lucky to have great cardiologists! Please let us know the results of your echo. 🙂

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kelliw | @kelliw | Jun 24, 2023
In reply to @jaymaysea "It is stressful. But, the good news is that your cardologist sounds very supportive which should..." + (show)
@jaymaysea

It is stressful. But, the good news is that your cardologist sounds very supportive which should give you a lot of comfort. Our journey is a winding road and the GPS (protocol) is telling you to go in a direction you don’t want to go. I hope your cardologist will be able to override and keep you on the path to a better quality of life.
It’s great to know a cardologist has the ability to override the protocol when in the best I Teresa of the patient.

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Thank you! Having all of the support and understanding from our group is such a comfort. I will let you all know how my dr. appt goes Monday.

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