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Does anyone have Amyloidosis as their primary condition?
I have Amyloidosis AL as my primary condition. I was diagnosed just over 2 years ago. Had weekly chemo for 6 months…..now in remission. I still have maintenance chemo once a month, as well as an antibody infusion once a month.
I’m very interested in others that are also undergoing the same treatment plan and are being treated for Amyloidosis as their only (primary) condition.
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Find out tomorrow what my regime of Chemo will be !!! Hopefully. How did they find your Amyloidosis? I had high protein in my urine which got the ball rolling for me!
I started with swollen ankles and swelling in my legs. After a few months, I would wake up with a swollen face. The cause was also protein leaking from my kidneys.
@brayden2004
Same here , my legs and arms are much bigger and all filled with fluid (EDEMA) and it's getting worse.
@brayden2004
Did you get a diagnosed
I have edema in my legs and burning in my ankles. My peripheral neuropathy is getting worse with tremors in my hands. My care team said it is amyloid amyloidosis associated with my Waldenstrom Macroglobulinemia. I also have polycythemia Vera for which I am receiving treatment.
saw my onconolgist yesterday and we mapped out my treatments for the next four months. Hopefully this will start to reduce the swelling (edema) in my legs arms and stomach.
I will start on CYBRO D on tuesday 01-20-2026
Diagnosed over 5 years ago with light chain amyloidosis and multiple myeloma. Did the 6 month regimen (cara-CyBorD) recommended by Stanford Amyloid Center. Still do the monthly maintenance chemo with daratumumab.