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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.

Have You Found Vyndamax To Help Or Shortness Of Breath Or Relieve It Altogether? Has Helped Me But I Still Get Winded Walking.

A MyAmyloidosisTeam Member asked a question 💭
Sacramento, CA
August 4, 2024
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A MyAmyloidosisTeam Member

I have always said that patients are the best educators!
Sheldon proves my point! Thank you Sheldon!

August 15, 2024
A MyAmyloidosisTeam Member

Anyone who believes that any symptoms of amyloidosis are relieved by Vyndamax is quite seriously wrong. It does not change any aspect of your clinical status. It literally just slows down the progress of your disease. Ask any medical researchers or amyloidosis specialists. Any doctors suggesting that symptoms are relieved is absolutely wrong. I've spent many hours over many months reading all of the studies. My conclusion is correct.

Knockdown drugs also called Silencer drugs, such as Amvuttra and Patisiran or Eplontersen, are more valuable treatments since they greatly reduce production of transthyretin in your liver.

Acoramidis may prove to be a superior stabilizer drug therapy than Vyndamax/Tafamidis. Acoramidis seems to go deeper into the TTR protein to better stabilize the bonds between the Hydrogen atoms and the 4 identical TTR proteins. That maintains he tetrameric (it means 4) TTR protein structure. It then doesn't break apart or misfold into amyloid fibrils that are monomers. Those end up destroying tissues in our bodies. They are toxic.

August 6, 2024
A MyAmyloidosisTeam Member

The already deposited amyloid fibrils are toxic. They eventually do destroy tissues wherever they are deposited. Tafadamis only works to a very, very limited degree to stabilize newly liver produced TTR. It is a temporary respite, not that long lasting. Read the studies! If you are diagnosed early then you have better survival odds.

August 19, 2024
A MyAmyloidosisTeam Member

I have talked with Sheldon and feel better after. He knows more than most Drs.about this disease!! Joe

August 15, 2024
A MyAmyloidosisTeam Member

One of my favorite quotations. I use it all the time to combat magical thinking…

August 8, 2024

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