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.

kelliw | @kelliw | Jun 1, 2023

In reply to @nbs "I have been worried for you. Did everything work out ok?" + (show)

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.

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)

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.

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)

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)

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)

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

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)

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?

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, 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?

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)

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…

Debra, Volunteer Mentor | @karukgirl | Jun 2, 2023

In reply to @irishpeaks "I actually just got home yesterday afternoon and got settled back in. I am feeling good..." + (show)

So glad to hear you're safe and back home. Even with all your great care, there's no place like "home". You are so correct about the unsung heroes of the medical profession. Those nurses can make an unpleasant time so much better. They can't make the pillows softer or the beds more comfy, but they get you a green popsicle or ice cream cup to make you feel better. They can bring you a warm blanket if you're cold. It's the thousand little things they do that combined with the big things make us better. Welcome back! You have plans for something fun after you're all better?

kelliw | @kelliw | Jun 2, 2023

In reply to @karukgirl "Oh my GOSH! @kelliw! What a frustrating time you've had. And it doesn't help that you..." + (show)

Thank you! I just got off of another 50 minute phone call trying to sort all of this out. My doctor finally updated the REMS portal this morning, so after being put through to 4 different people, my new lower 2.5mg dose is being shipped today, to arrive tomorrow, so I won't miss a day. Thank goodness! Thank you for your words of encouragement! This has been pretty stressful-trying to teach my children and keep them busy while dealing with all of this! Very time consuming. I guess I should be grateful though that there are strict protocols in place to keep me/all of us safe. I try to be a positive person most of the time! 🙂

irishpeaks | @irishpeaks | Jun 2, 2023

In reply to @karukgirl "So glad to hear you're safe and back home. Even with all your great care, there's..." + (show)

I don’t have much planned for the weekend. I will probably use the extra days to re-acclimate back to the daily grind so I’m not grabbing tail when the time comes. Slowly, of course.
One thing I forgot to throw out there as far as specifics, is that the hereditary gene in question is the LMNA gene. After extensive testing by a reputable genetic testing specialist, it was narrowed down to that. I won’t go into details about it for fear of mistranslating their info, but that’s the conclusion that was drawn.
Might make for some interesting research for someone who is curious.
I hope everyone reading this has a happy and healthy weekend…keep fighting the good fight!