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A MyAmyloidosisTeam Member asked a question 💭
Massachusetts
October 4
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Answer Summary

Members explored why Attruby may be less commonly mentioned compared to other hATTR treatments, with helpful explanations about how it works... Read more

Members explored why Attruby may be less commonly mentioned compared to other hATTR treatments, with helpful explanations about how it works differently from silencer drugs like Amvuttra and how Medicare coverage may play a role. Several members shared that none of the current approved drugs can reverse existing amyloid damage, but silencer and stabilizer drugs work together to slow progression, especially when both heart and nerve involvement are present. A recurring theme was community support around managing painful symptoms like carpal tunnel, with one member sharing that hand surgery brought lasting relief after years of burning pain.

A MyAmyloidosisTeam Member

Peripheral neuropathy is an umbrella term for any damage to the peripheral nervous system. Polyneuropathy is a specific type of peripheral neuropathy that affects many nerves simultaneously throughout the body.
I have peripheral neuropathy but not polyneuropathy. At least that is what my Neurologist told me after my electromyophraphy testing in 2024. Bilateral carpal tunnel is an example of peripheral nervous system damage.

October 6
A MyAmyloidosisTeam Member

Beverly: Amvuttra may be more helpfull if you have polyneuropathy or severe neuropathy related to broken-up TTR that is affecting your peripheral nervous system. It may also be more helpful if your heart muscle has a lot of existing amyloid fibril deposition.

None of the FDA approved 2 stabilizer drugs or 2 silencer drugs affects the already deposited amyloid fibrils or oligomers (both are the result of a tetrameric (4-protein bonded with hydrogen) normal Transthyretin protein structure breaking up into monomers (single protein).

Those are unintended abnormal protein structures that then misfold and eventually end up deposited as toxic amyloids in just about anywhere in your body except (probably not) your brain.

As to the damage already caused to your internal organs or nerves, that damage is irreversible and permanent. Even the as yet unavailable and non-FDA approved depleter drugs, those cannot repair damaged heart tissues or nerves. They can however, improve your cardiac functioning and reduce the long-term toxic effects of the already deposition broken-up TTR. You would still need to be on a silencer drug even with a depleter drug.

October 5
A MyAmyloidosisTeam Member

Amvuttra is a gene silencer drug that stops about 88% of your liver's production of Transthyretin after 18-24 months of the injections. Attruby is a Transthyretin protein stablizer very similar to Vyndamax, which is also a TTR protein stablizer drug. They do opposite things. Different results.

With Amvuttra (Vutrisiran) your blood serum level of prealbumin (TTR/Transthyretin) is greatly reduced so there is much less protein to fall apart and cause more damage to your body.
Attruby stablizes the structure of the cloverleaf shaped protein and in that way slows the progression of your hATTR disease. Your body's blood serum level of TTR is higher than if you were on only Amvuttra.

I am on both a stablizer drug and on Amvuttra. I have wild-type amyloidosis. wtATTR-CM.

October 4
A MyAmyloidosisTeam Member

Beverly, sorry to hear you had so much pain, but I am happy you won the battle of the nerve pain in your hands! Blessings and hope the heart meds help with your energy and strength. You sound like a strong woman and ready to fight for your health! And win!

October 16
A MyAmyloidosisTeam Member

Thank you Sheldon! It’s always great to get your advice and feedback.

October 5

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