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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.

Are the drugs used to treat hereitary ATTR available for persons with WILD ATTR?

A MyAmyloidosisTeam Member asked a question 💭
ladypaula@sympatico.ca

My dx is Wild ATTR. I have heart failure and neuromotor problems. I also have GI issues and have been put on the FOD-MAP diet. My heart failure is being managed with 6 cardiac medications, but so far I have not been able to access drug treatment specifically for ATTR. I am being seen by excellent practitioners but the Center does not have a dedicated Amyloid program. Should I seek out an Amyloid program to access treatment for my amyloid?

February 17, 2025
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A MyAmyloidosisTeam Member

Thank you, Sean. I am a patient at Princess Margaret. I have enquired about their amyloidosis clinic and have leared it focuses on light chain.
On the upside, I have an appointment with Dr. Diego H.Delgato, a colleague of my cardiologist. Dr. Delgato was a Principle Investigator on the HELIOS-B trial (Vutrisiran) and he may be able to guide me to clinical trials in which I may be able to participate remotely. Also, I have a meeting with my neurologist who specializes in neuromotor disease. She will report to me her findings from my second half-day session of testing in her lab and I will find out if I qualify for Patisiran based upon my neuromotor involvement.
Finally, I am making inroads for treatment.

March 7, 2025
A MyAmyloidosisTeam Member

Yes. ASAP. This disease can be very aggressive and the damage is cumulative, but avoidable. You should have been referred to a Specialty Clinic the lack of proper treatment. You can find resources here: https://www.amyloidosissupport.org/

Amyloidosis Support Groups - AmyloidosisSupport.org
Amyloidosis Support Groups - AmyloidosisSupport.org
https://www.amyloidosissupport.org/
February 17, 2025
MyAmyloidosisTeam

Yes, the drugs used to treat hereditary ATTR (hATTR) amyloidosis, such as tafamidis (Vyndamax, Vyndaqel), can also be used to treat wild-type ATTR (ATTRwt) amyloidosis. These medications work by stabilizing the TTR protein to prevent amyloid fibril formation. Given your diagnosis and symptoms, seeking care at a dedicated Show Full Answer

Yes, the drugs used to treat hereditary ATTR (hATTR) amyloidosis, such as tafamidis (Vyndamax, Vyndaqel), can also be used to treat wild-type ATTR (ATTRwt) amyloidosis. These medications work by stabilizing the TTR protein to prevent amyloid fibril formation. Given your diagnosis and symptoms, seeking care at a dedicated amyloidosis program could provide access to specialized treatments and clinical trials. It may also help ensure a more tailored approach to managing your condition.

February 17, 2025
A MyAmyloidosisTeam Member

Thank you, Joe. I have a great cardiologist at Toronto General Hospital/University Health Network who is extremely knowledgeable about ATTR so I am covered with regard to my heart failure.But we have no "CENTRE OF EXCELLENCE such as Mayo or Cleve. Clinic here.

July 25, 2025

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