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amyloidosis

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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Vyndaqel

Vyndaqel

Currently, I am in the early stages of wild type ATTR. What is your advice on this drug?

A MyAmyloidosisTeam Member said:

I need every bit of advice I can get. I have a top amyloidosis doctor at Columbia University Hospital in NYC who i have great faith in but still hard to do anything without being out of breathe… read more

posted about 1 month ago

Covid 4th Shot

Covid 4th Shot

I am seeing people recommending a 4th shot - Has anyone else hearing this and what do you think?

A MyAmyloidosisTeam Member said:

I get weekly immune therapy thus I’m pretty protected. But still am very cautious. I do have 2 Pfizer shots (made no antibodies) they come weekly in HIZENTRA!

posted 3 months ago

Anyone On Vyndamax 61 Mg?

Anyone On Vyndamax 61 Mg?

How long? What was the benchmark? Have you been retested to see your effectiveness of this drug?

A MyAmyloidosisTeam Member said:

Galparrott I have seen you mention that you have wild type TTR. Tegsedi is designed to stop the progression of the polyneuropathy associated with hATTR. I do know several patients that are now on both… read more

posted 10 months ago

Can It Be Detected In An Echo Cardio Gram?

Can It Be Detected In An Echo Cardio Gram?

A MyAmyloidosisTeam Member said:

I had the definitive scan called a Cardiac PYP. You’ll probably have to get this at a hospital. Look it up then discuss w cardio!

posted 12 months ago
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