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Hi all, my name is Gerard and I live in Bangor, ME. I am 84 and I have been diagnosed with Wild-type ATTR amyloidosis. Been 3 months on Vyndamax. My condition is deteriorating at an accelerated pace. Anybody treated with Amvuttra willing to share experience?
Answer Summary
Members responded to Gerard's search for real-life experiences with Amvuttra for Wild-type ATTR amyloidosis, with one member sharing that it... Read more
Can you get to Boston 4 times a year? Boston Medical Center is one of the leading amyloidosis clinics and research centers. Amvuttra is a single shot in the back of the arm or stomach every 90 days. I believe Amvuttra to be a much more impactful medication than Vyndamax.
Hi Gerard,
I can't speak to ATTR CM, but Amvuttra has eliminated the Neuropathy symptoms i was developing in my hands and feet. Additionally, recent results from Alnylam show improved Cardio function, gastro and kidney function. See press releases from Alnylam website:
https://investors.alnylam.com/press-releases
I am in contact with Alnylam Assists, and they are very responsive.
However, they have no references in my isolated corner of the U.S.
You could try reaching out to the Pharma Co., Alnylam, to see if they can help direct you to a more appropriate Health Care Provider:
https://www.alnylam.com/contact-us
Joe5: Thank you for your timely comments. I have been evaluated by the Boston Amyloidosis Center but they declined to prescribe Amvuttra because my cardiac condition is still "too mild" based on their protocol... whereas I read that this is the best time time to be treated with Amvuttra.
My official condition is: "diagnosis of mild cardiomyopathy of wild-type combined with polyneuropathy without hereditary mutations", currently on Vyndamax trying to obtain Amvuttra therapy because of fast progressing polyneuropathy symptoms.
I am becoming desperate to get on Amvuttra because I have already lost most of my autonomy. I know what I need, I have a perfusion Center where I live and they just need any MD to sign the prescription. Very frustrating!
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