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This Question Is For Amy Sufferers In England. Have Any Of You Started Recently On Tafamidis? I Was Wondering If Anyone Had As Now Passed.

A MyAmyloidosisTeam Member asked a question 💭
Clacton-on-Sea, UK
September 14
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A MyAmyloidosisTeam Member

Thanks Dorothy for your reply. I have been to NAC Royal Free twice now. I had a phone call and a follow up letter to say I would be getting Tafamidis delivered to me every month, so far I have not received anything. Guess I am too impatient. Hope you are keeping ok. God bless. Xmas

September 14
A MyAmyloidosisTeam Member

Hi Margaret I'm from Birmingham West mids.ive 8been on meds for 3 wks but i know no one who is on meds .infact the medical professionals don't know about Amy unless you go to Amy hospital .Dx😄

September 14
A MyAmyloidosisTeam Member

Tafamidis, also known by its brand names Vyndamax and Vyndaqel, is a medication approved by the U.S. Food and Drug Administration (FDA) to treat people with hereditary (hATTR) and wild-type amyloidosis, particularly those with heart symptoms. Studies have shown that tafamidis can improve neurological function, delay disease Show Full Answer

Tafamidis, also known by its brand names Vyndamax and Vyndaqel, is a medication approved by the U.S. Food and Drug Administration (FDA) to treat people with hereditary (hATTR) and wild-type amyloidosis, particularly those with heart symptoms. Studies have shown that tafamidis can improve neurological function, delay disease progression, and enhance quality of life. It is generally considered safe, with some participants experiencing serious adverse events like chest pain and urinary tract infections, but no deaths were associated with the treatment.

If you are in England and considering or have started on tafamidis, it would be beneficial to discuss your experiences with your healthcare provider and support groups to share insights and gather more information.

September 14

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