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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.
421 questions
Have Any Of You Guys Been Receiving Helios B/Vutrisiran?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

No. Just Vyndamax

posted 3 hours ago
Has Anyone Been Taken Off Toporol And Had Their Blood Pressure Go Up? Or Do Any Of You Have High Blood Pressure And If So, What Do You Take?
A MyAmyloidosisTeam Member asked a question 💭

My husband was taken off toporol after years of taking it and amlodipine to control his blood pressure. He is now taking Lisinopril and doxazosin and his blood pressure has steadily increased even though the doctor has increased the meds.

A MyAmyloidosisTeam Member

Not taking any BP meds. Sorry I cannot help. Out of my wheelhouse.

posted 2 days ago
Trial NI0006 On ATTRwt Drug To Remove Amloid Fibrlis From Heart. Will This Remove Amloid From Muscles, Nerves And Spine Also?
A MyAmyloidosisTeam Member asked a question 💭

I have minor damage to heart but lost unexplained strength in left leg.

A MyAmyloidosisTeam Member

I’m sure it would. Why can’t they push this through quickly like they did with the Covid vax? Now I want it!!!!

posted 3 days ago
Prognosis With Wild Type Amyloidosis
A MyAmyloidosisTeam Member asked a question 💭

Wild type of Amyloidosis. How long have you had it?
Are you on Vyndamax? How long taking Vyndamax? Any prognosis from your doctors?
I was diagnosed in October’23, 1st stage. Been on Vyndamax since mid November. Any help appreciated.

A MyAmyloidosisTeam Member

I was diagnosed with wild type last year
Been ln vyndamax for about 6 months. Been doing better. No side effects. I was in stage 2.

posted 3 days ago
Carpal Tunnel Is A Very Common Contributing Symptom Of Amyloidosis. I Had Surgery Which Was Successful For 1.5 Year And Now 7 Years Later
A MyAmyloidosisTeam Member asked a question 💭

It is back worse than ever. What is the mechanism of Amyloidosis that causes carpal tunnel why does surgery help temporarily and why are second surgeries usually not successful? My CT impacts the quality of life certainly more than the heart issues at this stage of my disease. thanks, Steve

A MyAmyloidosisTeam Member

Stephen.I have numb thumb and fingers on my right hand which I think is more peripheral neuopathy caused by Amyloidosis than carpel tunnel. I am checking out carpel tunnel again though after surgery… read more

posted 3 days ago
How Genetic And Environmental Factors Induce The Production Of Light Chains Production ,beyond The Normal Range .
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Dear Mr. Vern - staying back in New Delhi ,India and couldn't go to Seattle. The treatment regimens for AL Amyloidosis seem almost similar across the continents. The Doctors tailor the treatment on… read more

posted 3 days ago
I Just Finished My Three Year Clinical Trial With Helios B,, Anyone Else In This Form That Has Undergone This Trial With Helios B/Vutrisiran
A MyAmyloidosisTeam Member asked a question 💭
Hi Everyone. Can You Folks Tell Me How You Handle Inappetence From AL Amyloidosis? My Dad Is Losing Weight And I'm Wondering How I Can Help.
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

First… can he eat? If he can, for me, anything I could eat. The amyloid makes all my food taste like crap but I just power through. I had a nutritionist tell me just put butter, sour cream, peanut… read more

posted 5 days ago
How Do Beverages With Caffeine Affect Your Amyloidosis?
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

No effect on me.

posted 3 days ago
Good News! We Have Secured The Date, Saturday April 20th, For An Amyloidosis Awareness In Philadelphia PA - Let Me Know If You Need Info
A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

I cannot make a commitment to attend at this time. It is a grand idea and if the conflicting situation is postponed i then will let you know. Until things change it will be a no for us. Thanks.

posted 3 days ago
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