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I've Been On Tafamidis 3yrs Now. Thought I'd Be A Goner By Now. Must Be Working . Anyone Else Passing The 3yr Mark On Tafamidis?

A MyAmyloidosisTeam Member asked a question 💭
Columbus, OH
January 28, 2023
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A MyAmyloidosisTeam Member

Eric, when i was first suspected of having Amyloidosis i was told that i had about 13 months to live. After getting the confirmation that i did indeed have it and that it was the wild type (ATTR) but at a very early stage i was given 60-70 months of life expectancy. Since those early diagnoses and hearing your story and others in the same boat i feel that i have been given a "life raft" with Vyndamax and i don't want to sit and wait until things change. My doctor at Mayo Clinic, at my 6mo follow up, indicated that with the response i've had while being on my medication he is telling me that if these results continue i could certainly live 10 to 15 years with Amyloid...
I Prasie God and thank everyone who has been praying for me everyday of this journey!!!

December 8, 2023
A MyAmyloidosisTeam Member

Hi RobertaBerk ........ I have only been diagnosed since March of 2021 with wild type Amy but the doctors commenced to diagnose the problem in August of 2020 when I reported to my doctor difficulty walking up a slight slope. Soon after, in March 2021 my Cardiologist obtained Vyndamax for me. So I am very similar to your husband but have not been through such a long period. I too have had positive results for almost three years with "no even slight changes" and I am also a strong supporter of vyndamax and visit the doctor only when I have too. I am 87 years old with my 88th birthday due this year in December. Just what is your husband's type of Amy, you forgot to mention.
We have similarities and I know of only one other with similar history. I track my Basic Metabolic Panel each time I see a doctor, see improvement in all areas and attempt to follow all the advice from the Cardiologist -who has never seen the Amy disease before in any of its variations. I would like to compare notes and if I can answer any questions about nutrition I'll be happy to do so. Regards Roy2

August 24, 2023
A MyAmyloidosisTeam Member

For those on or questioning Vyndamax: my husband is 89 was diagnosed with Attr w/t 5 yrs ago and went on Vyndamax a few months later. I do not know the numbers but every checkup we were told , no changes or slight changes. From a non medical standpoint I can tell you he has never had to go to the hospital for anything attr related. I am sure Vyndamax has been responsible for slowing down the disease process. The big issue he does have is malnutrition. Any ideas?

July 6, 2023
A MyAmyloidosisTeam Member

I passed the five year mark in Dec.🥰

April 8
A MyAmyloidosisTeam Member

Hi Bill2 .... I had a similar conversation with my cardiologist last month. He initially diagnosed me with Amy wild type and it was later confirmed by an Amy specialist. His comment was that he could see no reason why my heart wouldn't last for a few more years. I guess if Amy doesn't get me first. Lets all hope Vyndamax works.

December 9, 2023

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