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Wild-type ATTR Amyloidosis (ATTRwt): What meds help you?

Posted by markwithwildattr @markwithwildattr, Mar 14 10:40pm

Just diagnosed with wild type ATTR at 67. I have been prescribed Attruby . My only symptom is tingling in my fingers so I’m hoping it was caught early . My understanding is this drug stops the creation of the misfolded proteins created in the liver . Is there a drug that dissolves the protein already in and around the heart as seen on my echocardiogram?

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markwithwildattr | @markwithwildattr | May 18 2:28pm
In reply to @billykopf1 "I have ATTR (Wild) and have been treated with Vyndamax for almost 2 years. NT Pro..." + (show)
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I have ATTR (Wild) and have been treated with Vyndamax for almost 2 years. NT Pro tests show the ATTR levels remain high. How does the new AMVUTTRA compare Vyndamax?? I, also, am really hopeful that CRISPR studies can rid the current deposits in the heart as I am very physically active and want to eliminate the concerns about impacts to heart function.

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I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in November and has a better success rate than Vyndamax (tafamadis). Attruby stabilizes the misfolded proteins in the liver so they be flushed out of your system . I was accepted in the CRISPR-Cas9 trial and will be receiving my infusion this coming Tuesday. The Cas9 enzyme is a protein that acts like molecular scissors, targeting the misfolded proteins in the liver and cuts(edits) the DNA , thus correcting the faulty gene. The cells natural DNA repairs the cut strands. This is a one time infusion to stop the liver from creating the proteins and will be revolutionary in treating ATTR-CM.
Amvuttra is a quarterly injection designed to reduce the amount of misfolded proteins created in the liver. It DOES NOT eliminate the production of the misfolded proteins. As a result I chose to patricipate in the clinical trial . Best of Luck

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billykopf1 | @billykopf1 | May 18 4:28pm
In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)
Profile picture for markwithwildattr @markwithwildattr

I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in November and has a better success rate than Vyndamax (tafamadis). Attruby stabilizes the misfolded proteins in the liver so they be flushed out of your system . I was accepted in the CRISPR-Cas9 trial and will be receiving my infusion this coming Tuesday. The Cas9 enzyme is a protein that acts like molecular scissors, targeting the misfolded proteins in the liver and cuts(edits) the DNA , thus correcting the faulty gene. The cells natural DNA repairs the cut strands. This is a one time infusion to stop the liver from creating the proteins and will be revolutionary in treating ATTR-CM.
Amvuttra is a quarterly injection designed to reduce the amount of misfolded proteins created in the liver. It DOES NOT eliminate the production of the misfolded proteins. As a result I chose to patricipate in the clinical trial . Best of Luck

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Thank you for the input; I am addressing the the best alternatives to ATTR with the Cleveland Clinic Amyloid Center, who, has me on Vyndamax for the past 18 months.
I really want the best current treatment until the CRESPER Cas9 solutions.
Thanks again and wishing great results with Cas9

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Profile picture for cheryljar
cheryljar | @cheryljar | Sep 1 7:46pm
In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)
Profile picture for markwithwildattr @markwithwildattr

I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in November and has a better success rate than Vyndamax (tafamadis). Attruby stabilizes the misfolded proteins in the liver so they be flushed out of your system . I was accepted in the CRISPR-Cas9 trial and will be receiving my infusion this coming Tuesday. The Cas9 enzyme is a protein that acts like molecular scissors, targeting the misfolded proteins in the liver and cuts(edits) the DNA , thus correcting the faulty gene. The cells natural DNA repairs the cut strands. This is a one time infusion to stop the liver from creating the proteins and will be revolutionary in treating ATTR-CM.
Amvuttra is a quarterly injection designed to reduce the amount of misfolded proteins created in the liver. It DOES NOT eliminate the production of the misfolded proteins. As a result I chose to patricipate in the clinical trial . Best of Luck

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What is the outcome of your CRISPR treatment(s)?

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Profile picture for chrissteyn51
chrissteyn51 | @chrissteyn51 | Sep 4 12:50am
In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)
Profile picture for markwithwildattr @markwithwildattr

I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in November and has a better success rate than Vyndamax (tafamadis). Attruby stabilizes the misfolded proteins in the liver so they be flushed out of your system . I was accepted in the CRISPR-Cas9 trial and will be receiving my infusion this coming Tuesday. The Cas9 enzyme is a protein that acts like molecular scissors, targeting the misfolded proteins in the liver and cuts(edits) the DNA , thus correcting the faulty gene. The cells natural DNA repairs the cut strands. This is a one time infusion to stop the liver from creating the proteins and will be revolutionary in treating ATTR-CM.
Amvuttra is a quarterly injection designed to reduce the amount of misfolded proteins created in the liver. It DOES NOT eliminate the production of the misfolded proteins. As a result I chose to patricipate in the clinical trial . Best of Luck

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Good day. Could you please sent me information how to enroll for the Cas9 trail. I live in South Africa and we do not have any registered medication for ATTR. Thank you very much.
Chris

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