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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.
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What's The "end Game" Look Like?

What's The "end Game" Look Like?

A MyAmyloidosisTeam Member

My cardiologist told me my cardiac Amyloidosis has no cure. This nasty protein made by my liver will keep squeezing on my organs. Try getting into
Clinical Trials! That’s where the best hope is!

I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?

I Am Wondering If I Should Continue To Take Tafamidis As I Am In Stage Iiib Advanced Heart Failure?

I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.

A MyAmyloidosisTeam Member

I have wild type stage II cardiac amyloidosis and stage 3B advanced heart failure. I had no side effects from Tafamidis but I don't know if I am seeing any benefit from it. My symptoms seem to be… read more

Cardiac Hereditary Amyloidosis

Cardiac Hereditary Amyloidosis

Who has cATTR? How long since diagnosis? What are your symptoms? what meds have you taken and/or are taking? If you are on onpattro what has it done for you?

A MyAmyloidosisTeam Member

My cost is $65.00 per month. It was difficult to get approved. I only have Medicare part A, my primary is Blue Cross , Blue Shield under my deceased husband retirement plan. Keep trying… read more

Does Onpattro Help Wild Type Amyloidosis?

Does Onpattro Help Wild Type Amyloidosis?

Is Onpattro treatment for wild type Amyloidosis?

A MyAmyloidosisTeam Member

Please check your Medicare benefits with whoever is your agent or directly with Medicare.

Ocular Amyloidosis Treatment

Ocular Amyloidosis Treatment

My mom has ocular amyloidosis. She is almost completely blind. Does anyone have suggestions for where to look for more specialized care and treatment? Any advice would be greatly appreciated.

A MyAmyloidosisTeam Member

I live in Charlottesville, VA, but my mom lives in Fostoria, OH (outside of Toledo)

Does Anyone Else Have Balance Issues?

Does Anyone Else Have Balance Issues?

My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

A MyAmyloidosisTeam Member

I have inner air damage because my right air constantly bleeds. However I'm not aware that it is caused by amyloidoses and no one has ever told me or in fact investigated it. Perhaps other people… read more

Vyndaqel

Vyndaqel

Currently, I am in the early stages of wild type ATTR. What is your advice on this drug?

A MyAmyloidosisTeam Member

Well you are lucky to be around and answering our e mails. So thank goodness for that. what were your symptoms when 1st diagnosed and when?

Covid 4th Shot

Covid 4th Shot

I am seeing people recommending a 4th shot - Has anyone else hearing this and what do you think?

A MyAmyloidosisTeam Member

I get weekly immune therapy thus I’m pretty protected. But still am very cautious. I do have 2 Pfizer shots (made no antibodies) they come weekly in HIZENTRA!

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