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.

I started taking Camzyos on 7/26/23 and now I’m suffering with insomnia.

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Profile picture for whidbey @whidbey

I have been on Camzyos 5 mg. 6 days now and have no improvement. I was on Disopyramide. I took naproxen and Dramamine for a migraine yesterday and had a bad reaction to those two drugs and was not warned about them. Has anyone else had a reaction to other drugs while on Camzyos?

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Good morning-I hope you start to feel the benefits of Camzyos soon! I have called the specialty pharmacist or my nurse navigator any time I had a question about a drug interaction, even for over the counter products. They are easy to get ahold of and very helpful. I think we need to be really careful about drug interactions. I am sorry you had that experience!

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I have been on Camzyos 5 mg. 6 days now and have no improvement. I was on Disopyramide. I took naproxen and Dramamine for a migraine yesterday and had a bad reaction to those two drugs and was not warned about them. Has anyone else had a reaction to other drugs while on Camzyos?

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Profile picture for kelliw @kelliw

I was taking it before I started Camzyos. It was one of the things my doctor tried before he learned about Camzyos. He started me at 25 mg, then bumped me up to 50 and then 100. I got very dizzy when he upped my dose to 100mg. So he brought me back down to 50mg. I have not had any negative reactions taking both. We discussed if I am going to continue taking it and for now I am. I take it in the morning with Camzyos and Atorvastatin. He said for now he wants me to continue with the Atorvastatin as well.

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Thank you. Very good to know. My heart rate has really been elevated today, averaging in the 90s all day. So my Dr. may add it to the list. Stay well.

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Profile picture for jaymaysea @jaymaysea

My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!

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You need a weekend away from all this hoo-ha! Enjoy your time. I hope they get this all straightened out for you...it's got to be stressful wondering and worrying if this is going to work or not. You hang in there too!

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Profile picture for jaymaysea @jaymaysea

Thank you @kelliw. You feedback is always so helpful. Did you experience any negative reactions to taking both. Were you taking it before you started Camzyos?

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I was taking it before I started Camzyos. It was one of the things my doctor tried before he learned about Camzyos. He started me at 25 mg, then bumped me up to 50 and then 100. I got very dizzy when he upped my dose to 100mg. So he brought me back down to 50mg. I have not had any negative reactions taking both. We discussed if I am going to continue taking it and for now I am. I take it in the morning with Camzyos and Atorvastatin. He said for now he wants me to continue with the Atorvastatin as well.

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Thank you @kelliw. You feedback is always so helpful. Did you experience any negative reactions to taking both. Were you taking it before you started Camzyos?

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Profile picture for jaymaysea @jaymaysea

My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!

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Thank you for the update! I am on 50 mg of Metropolol. I hope you have a fantastic weekend with your friends! 🙂

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My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!

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Profile picture for nanakpm @nanakpm

You are lucky your doctor is so involved. A senior researcher on Camzyos acknowledged that it is important to have an experienced sonographer to do the echo. Because w HOCM there is contamination of the image and it’s hard to get a good reading. Great that your doctor came in to assist! And that he takes your functionality into account, not just echo results. Keep feeling better!!!

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Thank you for that info! It was really reassuring that he would take the time to come in and see exactly what he wanted to see. I hope you have a great day! 🙂

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