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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.
636 questions

Amyloidosis In The Muscle: Do Any Know Anything About This

A MyAmyloidosisTeam Member asked a question đź’­

What Are Your Top Tips For Dealing With Amyloidosis In The Heat?

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

Stan, you are d'Man! Stay close with your maker and remind your lord and savior to be on the lookout.

posted 4 days ago

How Do We Determine What “stage” Of Amyloidosis My Husband Is In?

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

To determine the stage of amyloidosis, doctors use various staging systems based on the type of amyloidosis and the affected organs. Here are some key points from the knowledge base:

- AL Amyloidosis… read more

posted 7 days ago

Will Amvuttra Help Misfolding Amyloid? I Have Wtattr

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

Amvuttra (vutrisiran) is designed to interfere with the creation of amyloid proteins in cells, which can help reduce amyloid deposits. However, it is specifically approved for hereditary… read more

posted July 18

Amvuttra I Have Wt Attr

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

I wish I could help Joseph. I have hATTR (CM). I’m sure you’ll get some answers soon. In the meantime you can check out the articles on this site. There should be something there for you.

posted July 18

Does Anyone With Postural Orthostatic Hypotension Still Drive?

A MyAmyloidosisTeam Member asked a question đź’­

My cardiologist just recently told me he didn’t see why I wasn’t driving already. No I never passed out sitting down but still uncomfortable with the idea. He said my problem would be when I reach my destination and stand up to get out of the car. With that and the neuropathy in my feet I’m still not sure. I would love to get behind the wheel again. 🤷🏻‍♀️

A MyAmyloidosisTeam Member

I have driving since last September with no problem.I drive less than an hour to my friends or to a club meetings.

posted July 17

Two Plus Two?

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

what is two plus two

posted July 15

HS ANYONE NOTICED A CHANGE WEHN THEY FIRST STARTED TAKING VYNAMAX?

A MyAmyloidosisTeam Member asked a question đź’­

Amyloids

A MyAmyloidosisTeam Member

No noticeable changes but one of my cardiologists bird that my heart wall thickness seems to have decreased slightly. I'm a Happy Camper about that.

posted July 13 (edited)

Did You Know There Is A New Drug For Amyloidosis Being Reviewed By FDA And Anticipated To Be Approved ? LEQEMBI . Another, - Being Reviewed

A MyAmyloidosisTeam Member asked a question đź’­
A MyAmyloidosisTeam Member

No I don’t think so. It’s more for Alzheimer’s patients

posted July 13

Do Insurance Companies Eventually Pay For Vyndamax? My Company Is Fighting "prior Approval" Even Though I Have Had A PVP Nuclear Scan.

A MyAmyloidosisTeam Member asked a question đź’­

I have wild Amy. Do I need to do invasive heart tissue biopsy?

A MyAmyloidosisTeam Member

Thanks Joel
I got my Vyndamax 2 days ago. It took a total of 4 weeks. Insurance company wanted invasive heart biopsy but my doctor convinced them to take results from PVP nuclear scan. Heart biopsy… read more

posted July 14
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