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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.

Featured Q&A

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

By A MyAmyloidosisTeam Member 10 answers

What's On Your Holiday Wish List That Could Improve Your Life With Amyloidosis?

By A MyAmyloidosisTeam Member 41 answers

Have You Found Vyndamax To Help Or Shortness Of Breath Or Relieve It Altogether? Has Helped Me But I Still Get Winded Walking.

By A MyAmyloidosisTeam Member 21 answers

What Lessons From Your Amyloidosis Experience Are You Applying In 2024?

By A MyAmyloidosisTeam Member 33 answers
815 questions

Does Anyone Diagnosed With Cerebral Amyloid Angiopathy Is Constantly Tired A Lot??

A MyAmyloidosisTeam Member asked a question 💭
Rockwall, TX
A MyAmyloidosisTeam Member

I've had cardiac amyloidosis for 8 years. My first symptom was shortness of breath
It just makes sense that as the walls of your heart get thicker it's not going to pump as much blood as normal… read more

February 10

What Is Nattokinase NSK-SD Several Fellow Patients Have Reported This As An Adjunct Or Core Treatment. Is This FDA Approved ?

A MyAmyloidosisTeam Member asked a question 💭
A MyAmyloidosisTeam Member

Don’t think it’s FDA approved. Before taking anything I would speak to whoever is in charge of your case. Hematologist, oncologist, etc. Some supplements can interact with your treatment.

February 8

Does Anyone Else Have Trouble Falling? I Have Fallen Twice In The Past Two Weeks.

A MyAmyloidosisTeam Member asked a question 💭
Highlands Ranch, CO
A MyAmyloidosisTeam Member

That happens to me too, maybe speak with a neurologist. What organ involvement do you have? You should mention it to whoever is handling your chemo. The velcade can worsen neuropathy. They might have… read more

February 8 (edited)

How Many People Take Diflusinal For Wtattr

A MyAmyloidosisTeam Member asked a question 💭
Detroit, MI
A MyAmyloidosisTeam Member

Joseph, I don't notice much difference, but I believe my arthritic pain would be worse if I weren't taking it. I have really painful arthritis mostly in my knees and back but now it is at least… read more

February 9

Has Anyone Taken Anything Besides Midodrine For Their Orthostatic Hypotension?

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY
A MyAmyloidosisTeam Member

Yes I was on Midodrine cause my blood pressure drops. I have learned I get dehydrated very easily when I do I get very lightheaded so now I take one Midodrine and sometimes don’t take any now and stay… read more

February 11

Does Anyone Know Of A Specialist In Broward County, Fl I Just Lost My Dr. I Have Cardiac W Attr With Afib. Would Appreciate Any Help.

A MyAmyloidosisTeam Member asked a question 💭
COCONUT CREEK, FL
A MyAmyloidosisTeam Member

wishing the best to you

February 9

Is It Possible To Get Of Metoprolol Tart With The Conditions I Have ? Thanks

A MyAmyloidosisTeam Member asked a question 💭
Peterborough Ontario Canada

ATTR-CM. Wild type with AFIB

Velcade What Is The Cost/month

A MyAmyloidosisTeam Member asked a question 💭
Tampa, FL

What Vitamins, Nutrients Or Other Medications Are Contraindicated When Taking Vyndamax

A MyAmyloidosisTeam Member asked a question 💭
Barnegat N.J

Age 89, Congestive heart failure, Osteoarthritis, and Glaucoma.
On Vyndamax 6 years

A MyAmyloidosisTeam Member

That’s ridiculous!

https://www.drugs.com/search.php?searchterm=Vyn...

I found the above. As far as supplements you could google ex: tumeric interactions with vyndamax. Do each supplement separately.

read more
February 11 (edited)

Does This Disease Go Away Or Can It Be Cured?

A MyAmyloidosisTeam Member asked a question 💭
Rockwall, TX
A MyAmyloidosisTeam Member

Amyloidosis cannot be guaranteed to be cured. However, treatments have been developed that can reduce symptoms and protect the body from damage. These treatments can help some people live disease-free… read more

August 1
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