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

Posted by markwithwildattr @markwithwildattr, Mar 14, 2025

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, 2025

In reply to @billykopf1 "I have ATTR (Wild) and have been treated with Vyndamax for almost 2 years. NT Pro..." + (show)

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

billykopf1 | @billykopf1 | May 18, 2025

In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)

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

cheryljar | @cheryljar | Sep 1, 2025

In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)

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

chrissteyn51 | @chrissteyn51 | Sep 4, 2025

In reply to @markwithwildattr "I have been on Attruby ( acaromadis ) since Febuary . Attruby was FDA appoved in..." + (show)

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

drw32 | @drw32 | Mar 18 5:31pm

In reply to @markwithwildattr "I am currently taking Attruby (acoramadis,712 mg a day for life) which was approved for ATTR..." + (show)

@markwithwildattr ... Mark..
I have also just been diagnosed with ATTR-CM WT, just started taking Attruby 2 days ago.
I would like to hear about your journey since Nov 2024 etc. and the Crispr Cas 9 trial.

Janell, Volunteer Mentor | @jlharsh | Mar 18 8:17pm

In reply to @drw32 "@markwithwildattr ... Mark.. I have also just been diagnosed with ATTR-CM WT, just started taking Attruby..." + (show)

Hi @drw32, I am glad to see you find Connect and others with Cardiomyopathy of Transthyretin-Mediated amyloidosis (ATTR-CM). I imagine you have quite a journey leading up to 2 days ago when you started Attruby.

I have my own set of genetic variants but am not completely familiar with yours, so I had to look it up. CRISPR-Cas9 is a type of gene-editing technology that can durably change DNA inside cells. It was interesting to learn that because it is such new technology, the Food and Drug Administration (FDA) recommends 15 years of safety monitoring for all CRISPR-based gene editing therapies.

As you wait for @markwithwildattr and others to comment you may find information from Mayo Clinic and American Heart Association helpful.

- Mayo Clinic Human liver disease and the evolving role of CRISPR/Cas9
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/human-liver-disease-and-the-evolving-role-of-crispr-cas9/mqc-20593603
- American Heart Association First-in-human trial of CRISPR gene-editing therapy safely lowered cholesterol, triglycerides
https://newsroom.heart.org/news/first-in-human-trial-of-crispr-gene-editing-therapy-safely-lowered-cholesterol-triglycerides
How does ATTR-CM affect you? What are your expectations after starting to take Attruby?

drw32 | @drw32 | Mar 22 7:54pm

Not yet, but heard that many are trying to create one

cousinvinney | @cousinvinney | Mar 22 8:48pm

Following, just diagnosed three days ago at the Mayo Clinic. I have no idea what to expect.
Can you all get me up to speed

Janell, Volunteer Mentor | @jlharsh | Mar 22 9:12pm

In reply to @drw32 "Not yet, but heard that many are trying to create one" + (show)

@drw32 I read your comment but cannot tell who you were intending to respond to.

Janell, Volunteer Mentor | @jlharsh | Mar 22 9:15pm

In reply to @cousinvinney "Following, just diagnosed three days ago at the Mayo Clinic. I have no idea what to..." + (show)

Ww, @cousinvinney. You must be processing quite a bit of information now that you received a new Transthyretin-Mediated amyloidosis diagnosis.

Are you comfortable sharing more about what your process of figuring all this out has looked like? What symptoms have you been having, and what is next?

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