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Anyone take new drug Camzyos (mavacamten) for HCM?
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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Have started Camzyos today. Here’s hoping that I get good results. The team here in Canada has been so helpful and supportive. Pharmacist had some concern about me taking Diltiazem but I’m not sure why.
All the best to everyone.
It is also prescribed to help reduce septal thickness
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1 ReactionI'm fixin to start Camzyos soon so they did an echo yesterday. The nurse went out and got the other nurse who did my previous echo to have her look at it. She tried a few things and they pulled up my previous echo. They didnt include me in the discussion but it seems like they couldnt find the obstruction this time. I have seen the valve leaflets folding back over the wrong outlet blocking flow at the end of pump for the last 12 years and while I was on mavacamten clinic trial for 6 months. When I asked them "Does that mean I'm cured?" they said my doctor would talk to me. Do you know if Camzyos is only prescribed for obstruction or if it can be used for ordinary HCM to help slow hard pumping or help reduce septum thickness?
UPenn
NYU
Morristown NJ Hospital
I have been to doctors at all three places. I was on it for 6 months.
Good luck to you.
I had a brief period recently of having the typical symptoms of OHCM (breathing issues when walking /going up stairs, chest pressure, etc). My cardiologist instantly had me get an echo - everything is great. My son said to me, "don't you become anemic?". Six days on iron and I was back to normal and my blood workup did came back that I was anemic. My cardiologist is thrilled that Camzyos has now been working since June and my internist isn't thrilled that I was anemic but I am. Sometimes hoofbeats are not zebras but horses.
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1 ReactionUnless you know what it's like, it is difficult to explain to others. I know exactly what you mean. It's not only frightening to be short of breath like that, but disabling too! How wonderful to be able to walk and not fear being short of breath.
I actually can breathe and start walking again
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3 ReactionsYay! It seems like Camzyos is working for you! You must be feeling better too?
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1 Reaction@boatsforlife that is amazing news!! I love how you said it was fun watching your doctors reaction after thinking it was too early to show any changes and then she compared the echo!
And how great to be able to start getting out and start exercising after not being able to for 15 years. Walking is so good for you and I hope you continue getting great results. Thanks for updating the group!
Hello @susanml, and Welcome to Mayo Connect! Like @boatsforlife mentioned, this is a very supportive support group. The Camzyos people are super helpers. They share with each other the things they have learned about this new drug protocol and are happy to reach out to help you too. There are many in the Camzyos group from Canada, so you are in good company.
I am so sorry to hear you have gone down hill so quickly. That must be frightening and very concerning. And just finding out six months ago too! When do you begin Camzyos?