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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.
A MyAmyloidosisTeam Member asked a question 💭
Saint Louis, MO

I have to moisturize legs thoroughly, wear compression, use una wrap procedure to wrap my legs, and wear plastic legs to massage my legs -- all this everyday. Draining!

August 12, 2025
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A MyAmyloidosisTeam Member

Just recently since I have been taking AMIODORINE, that I noticed my ankles and feet swelling. The Dr, gave me water pills, but I have not taken any. I try to watch what I eat. I know re sauce causes some swelling. No real edema but very dry skin on my arms and legs. I try to watch what I eat as my life has changed drastically since having AMYLOIDOSIS ATTR CM..Hope this helps in any way. Have a good day.

August 17, 2025
A MyAmyloidosisTeam Member

I am a salt addict. My BP is controlled by Valsartan. It actually causes super low readings sometimes. Very inconsistent but I still use salt. I have tried to cut it down a bit though.
Just because we have Amyloidosis, it doesn’t mean that we have to give up everything ! If I was young, maybe more compliant …. lol!
Probably not!

August 13, 2025
A MyAmyloidosisTeam Member

I don’t have any swelling. I actually DO eat salt now! I was always told not to eat salt because my bp was high. Now it’s low. I take meds to raise it. Sometimes after a bad bathroom situation I eat a bunch of olives to bring up my bp. Crazy how life can turn on a dime.

August 13, 2025
A MyAmyloidosisTeam Member

My Amyloidosis meds are Amvuttra, Vyndamax, and Diflunisal. I’m also on spironolactone, some other statin, vitamin A & D, and something else I can’t remember. I was on Amlodipine but doc took me off it. My swelling is mostly from the blood and fluid from my lymph system. It’s horrible when the blisters burst and the results are leg ulcers that are treated by the wound clinic. Well I do much of the treatment but wound clinic does the checkups.

August 13, 2025
A MyAmyloidosisTeam Member

They increased my duritic medication to reduce fluid intake . But I still build up inflammation in my knees and risk . Are you watching your fluid and salt intake daily . I don’t even pick up my salt shaker or salt container anymore I use herbs . Try herbs in preparing your foods you will find it’s better for your health.

August 12, 2025

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