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Amyloidosis diagnosed through blood tests: Kidney biopsy necessary?

Posted by 3419harrison @3419harrison, Jul 26 1:54pm

Diagnosed with AL amyloidosis through blood tests- 77 years old - is a kidney biopsy necessary? I chose not to do it but am re-thinking. Haven't started the drug therapy yet.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jul 26 2:42pm

Welcome to Connect @3419harrison, AL Amyloidosis is a disease which occurs when a protein called amyloid builds up in organs This amyloid buildup can make the organs not work properly and can affect the heart, kidneys, liver, spleen, nervous system and digestive tract.
If your doctor is suspecting your kidney is impacted, that may be why they suggested a kidney biopsy. It would allow them to test the tissue to see what type of amyloid is involved

Two members who have kidney involvement with amyloidosis are @sherryzitter and @peggyjean. They both make reference to having kidney biopsies. I’m going to tag them in hopes that they may be able to give you some more information related to the biopsy and whether you may want to reconsider the decision not to have it done.

What type of therapy has your doctor ordered for you?

REPLY
1 reply
3419harrison | @3419harrison | Jul 26 3:21pm
In reply to @loribmt "Welcome to Connect @3419harrison, AL Amyloidosis is a disease which occurs when a protein called amyloid..." + (show)
@loribmt

Welcome to Connect @3419harrison, AL Amyloidosis is a disease which occurs when a protein called amyloid builds up in organs This amyloid buildup can make the organs not work properly and can affect the heart, kidneys, liver, spleen, nervous system and digestive tract.
If your doctor is suspecting your kidney is impacted, that may be why they suggested a kidney biopsy. It would allow them to test the tissue to see what type of amyloid is involved

Two members who have kidney involvement with amyloidosis are @sherryzitter and @peggyjean. They both make reference to having kidney biopsies. I’m going to tag them in hopes that they may be able to give you some more information related to the biopsy and whether you may want to reconsider the decision not to have it done.

What type of therapy has your doctor ordered for you?

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DARA-VCD weekly for 6 months. From testing it seems the kidneys are mainly involved.

REPLY
1 reply
sherryzitter | @sherryzitter | Jul 28 8:35am
In reply to @3419harrison "DARA-VCD weekly for 6 months. From testing it seems the kidneys are mainly involved." + (show)
@3419harrison

DARA-VCD weekly for 6 months. From testing it seems the kidneys are mainly involved.

Jump to this post

@3419harrison my kidney biopsy confirmed my multiple myeloma, But I don’t believe it diagnosed my amitosis. My bone marrow biopsy show the Emily Das, and a special test that takes up to two months actually counted the number of Amyloid cells in my bone marrow! So I don’t have a lot to add on this question. Best of luck!

REPLY
mahen | @mahen | Jul 30 3:37pm

I was diagnosed with AL Amyloidosis nearly 2 years ago. It was randomly found during a routine EGD. The biopsy of the stomach was stained with Congo Red and it reacted. I then had a bone marrow biopsy, which also was positive for amyloid. I think when in the marrow it means systemic. They found some amyloid in my heart through testing. I finished the 6 months of CyBorgD with Dara, and am now just on a 4 week injection of Dara. I am 73 years old. What blood tests confirmed the amyloid? In my opinion, I wouldn't put off treatment, and I would also want a confirmed diagnosis. Mayo is a leader in the treatment of amyloidosis. Unfortunately, Mayo wasn't an option for me at the time. I've learned so much since diagnosis. Best of luck.

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