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Camzyos treatment location / expertise?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 8 11:05am | Replies (20)Comment receiving replies
Thanks for your message!
It's helpful to hear what you and others have done.
I was in touch with one treatment team, and they said a similar thing, re what you wrote. That where I get the camzyos from is where I'd need to go for at least the 4, 8, 12 week follow ups, and for the long term - as you mentioned for yourself.
Someone else I spoke to, in person, indicated that they thought that perhaps longer out follow ups might be able to done at a different location. But I'm guessing that depends entirely on the prescribing Doctor? ( and personal situation) ?
Good to know that camzyos can be used to get stronger for surgery. Great that you were able to use it that way. Hope you are very well now , and that surgery was a success for you.
All best wishes.
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Since camzyos is still new your team of prescribers is on the REMS program so they all work closely together monitoring you the patient. As the medicine is getting more attention the FDA is loosening its grip and allowing for less frequent echos.
At some point in the future the drug will probably be less monitored or completely replaced with the new drug thats being tested now!
I suffered to back to back exercised induced heart failures so by the time i was finally diagnosed correctly i was very weak and could not climb stairs or even a step ladder! I was diagnosed with HCM with severe LVOTO the mayo cardiologist said because of my youth and active life style surgery would be the best option for me and camzyos would get me stronger by allowing me to get back to moderate exercise!
It worked by allowing me to get back on my bicycle and doing activities i liked but it did have its limits! Im 11 weeks out had my followup echo 2 weeks ago and no obstruction found! Was allowed to start using a spin bike to start prepping me for my mountain biking:)
Hope things work out for you with all this soon:)