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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irishpeaks | @irishpeaks | Jun 2, 2023
In reply to @karukgirl "@irishpeaks, just checking back with you to see how it went in the hospital. Hopefully your..." + (show)
@karukgirl

@irishpeaks, just checking back with you to see how it went in the hospital. Hopefully your ICD didn't kick like a mule. Did the Sotalol work? How are you doing?

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I actually just got home yesterday afternoon and got settled back in.
I am feeling good so far, but can definitely notice a bit of a change in the way I feel at times. Haven’t really been able to pinpoint it yet, but it’s not a bad feeling by any means.
I went off of Amiodarone and Metoprolol throughout the process and it is now replaced by Sotalol. Sounds like a great trade-off, but time will ultimately tell the real story.
The care I received was excellent. I truly feel like the medical profession, especially the nurses, don’t get the credit/appreciation they deserve. Without them and their dedication to their profession, this world would be in absolutely horrible shape. So, with that being said, thank you to all of you. You are greatly appreciated…

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 2, 2023
In reply to @irishpeaks "I appreciate the kind words and well wishes. I will certainly check back in and share..." + (show)
@irishpeaks

I appreciate the kind words and well wishes. I will certainly check back in and share my outcome with you fine folks and hopefully it’s not only encouraging news for me, but others in the future in the form of new knowledge for their treatment plans.
We can’t always control the outcome, but we can control how we react to it.

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@irishpeaks, just checking back with you to see how it went in the hospital. Hopefully your ICD didn't kick like a mule. Did the Sotalol work? How are you doing?

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Jun 2, 2023
In reply to @kelliw "Good morning! I am still feeling great but had a very frustrating day yesterday. As you..." + (show)
@kelliw

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

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Oh my GOSH! @kelliw! What a frustrating time you've had. And it doesn't help that you were already anxious about the new lower dose. I'm stunned, but not surprised by the treatment you and your doctor received. It's Friday. The weekend is coming. Are you hooked up now with the correct dose and have the pills in your possession?

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1 reply
kelliw | @kelliw | Jun 2, 2023
In reply to @charlieandmary "This country has no "Health care" what we really have is "Money care" It seem like..." + (show)
@charlieandmary

This country has no "Health care" what we really have is "Money care"
It seem like our doctors are dragging their feet, but, its the rules they have to follow made up by lawyers that slows them down. (my opinion)

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I totally agree with you. My doctor asked me to be patient because he is trying really hard on his end.

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charlieandmary | @charlieandmary | Jun 2, 2023
In reply to @kelliw "Good morning! I am still feeling great but had a very frustrating day yesterday. As you..." + (show)
@kelliw

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

Jump to this post

This country has no "Health care" what we really have is "Money care"
It seem like our doctors are dragging their feet, but, its the rules they have to follow made up by lawyers that slows them down. (my opinion)

REPLY
1 reply
jaymaysea | @jaymaysea | Jun 2, 2023
In reply to @kelliw "Good morning! I am still feeling great but had a very frustrating day yesterday. As you..." + (show)
@kelliw

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

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Poor poor you. Bureaucracy is very frustrating. Happy Cigna did a rush approval. I have them and find they are “generally”helpful. Try not to stress (I know that is easier said than done). I pray the lower dosage works for you. Keep us posted.

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kelliw | @kelliw | Jun 1, 2023
In reply to @nbs "I have been worried for you. Did everything work out ok?" + (show)
@nbs

I have been worried for you. Did everything work out ok?

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Thank you-nope not at this point. I have one pill left for tomorrow and no word about the new prescription being sent. This is so ridiculous. The nurse navigator finally called me back to days later. Quite a change from the beginning when they returned calls immediately. I am very frustrated.

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nbs | @nbs | Jun 1, 2023
In reply to @kelliw "Good morning! I am still feeling great but had a very frustrating day yesterday. As you..." + (show)
@kelliw

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

Jump to this post

I have been worried for you. Did everything work out ok?

REPLY
1 reply
kelliw | @kelliw | Jun 1, 2023

Good morning! I am still feeling great but had a very frustrating day yesterday. As you know, my dr. had to do a new prescription for 2.5 instead of 5mg, that I have been taking. He called it in Friday. I am now down to 1 pill and yesterday the insurance company said they won't approve the new dose until he does another prior authorization! He said she has already been approved for Camzyos! They said with each new dose change he has to do another PA, which is a TOTAL pain for him. So he was on hold for over 30 minutes-and has patients to see-never got through. I said I will try chat. I was on chat for AN HOUR, while I am trying to get ready for Open House last night, and take care of 18 2nd graders! I went away to help a child for 2 minutes, after I had been sitting there waiting for another response for 10 minutes and she disconnected the chat saying I didn't respond! Then I got on chat for another hour and only came away with nope you will not get your meds until the PA has been approved which could be 3-8 days!!! I was beyond frustrated, as was my doctor. BMS reps and the training process for my doctor have not made this an easy process. Anyway...I got a call from my doctor's assistant yesterday afternoon that Cigna did a rush approval and so I will hopefully get my new prescription tomorrow. I have one pill left for tomorrow. Now I just have to hope this lower dose still works. If not, we will have to go through this process all over again! GRRRRRR

REPLY
4 replies
kelliw | @kelliw | May 31, 2023
In reply to @nbs "I read this article in January before I had been approved to take Camzyos and before..." + (show)
@nbs

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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Thank you for this article! It was very informative. I shared it with my family and they appreciated getting more information too.

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