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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.
A MyAmyloidosisTeam Member asked a question 💭
Sturgeon Bay, WI
July 17
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A MyAmyloidosisTeam Member

It can take up to 6-9 mo after starting dosing to kick in

July 17
MyAmyloidosisTeam

Feeling worse after starting Vyndamax (tafamidis) can be frustrating, especially when you're hoping for improvement. It's actually something others with amyloidosis have experienced too — one MyAmyloidosisTeam member shared that "some days are OK, other days I can't get out of my chair," and another said treatment "wipes me Show Full Answer

Feeling worse after starting Vyndamax (tafamidis) can be frustrating, especially when you're hoping for improvement. It's actually something others with amyloidosis have experienced too — one MyAmyloidosisTeam member shared that "some days are OK, other days I can't get out of my chair," and another said treatment "wipes me out for two weeks."

There are a few reasons why you might feel worse even while on treatment: - The disease may still be progressing — Vyndamax works to slow progression, but it may not reverse symptoms already present
- Fatigue and low energy are common with amyloidosis itself, driven by heart strain, nerve involvement, or sleep disruption
- Treatment side effects can affect energy, mobility, and overall function
- Amyloid buildup may continue affecting organs even during treatment in the early stages

The important thing is to bring specific details to your doctor — what time of day you feel worst, what activities trigger it, and what (if anything) helps. Two months in is a good checkpoint to have that honest conversation with your care team about whether adjustments are needed.

July 17

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