amyloidosis

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For Veterans With Agent Orange Exposure

Would like to email with any veterans whose amyloidosis is Agent Orange related.

posted about 1 month ago

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Vyndaqel

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

posted 2 months ago

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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

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Covid 4th Shot

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

posted 4 months ago

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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

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Anyone On Vyndamax 61 Mg?

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

posted 10 months ago

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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

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