Amyloidosis diagnosed through blood tests: Kidney biopsy necessary?

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?

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

@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!

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.

Two weeks ago, my husband started Dara CyBorD for monoclonal gammopathy of clinical significance. The clinical significance is a hemolytic anemia, Cold Agglutinin Disease. Can you tell me what sort of symptoms you experienced with the treatment? Husband is 65 and in good health other than the anemia. Doc reduced the dexamethasone after the first week. We were told that people can work on this treatment plan but he can barely function on days 2 & 3 after the treatment.

Hi @janetdh88, I see you’re responding to member @mahen about their use of Dara CyBorD and wondering about the treatment and its side effects. It’s so helpful to be able to speak with others who may be sharing a similar medication or diagnosis.
I just wanted to make sure @mahen sees your comment by putting in their @name in the reply. That way they’ll get a notification.

What does your husband’s oncologist share about his not being able to function day 2 and 3 after treatment. What are his symptoms?

The oncologist reduced the Dex after the first week and he has developed this week's symptoms on the weekend. He gets his treatments on Wednesdays. He is normally a high energy guy and he was in bed 20 hours on Saturday. He can barely function which as you might imagine is very frustrating for someone who likes to get things done. Other symptoms are cough (fairly constant throughout the week), change in taste, loss of appetite, and some stomach pain. As the week progressed last week, he had significant headaches too.

I was trained as a dietitian so I can try to mediate some of the food issues.

Thanks for your help.

Hi,
I also amonthins treatment with AL Amyloidosis. Everybody is different, but generally speaking days two and three are the worst ones for me too. I have found that movement does help and if there’s any way for him to move and do as much as possible on those days, the side effects subside somewhat. That being said, it really is impossible to know what most challenging days will be.

I have my treatments on Tuesday and today is Sunday and I was OK this morning. I was actually quite active and then this afternoon I could barely move. I also get significant skin tightening around my face and the pulse of my neck beats un control at times on these days.

My biggest recommendation for him is to stay hydrated (I’m on a fluid restriction as the disease has put me into heart failure) , but hopefully your husband doesn’t have this challenge too. Eating well is also important because there’s not much else he can control.

Good luck and make sure he understands that everyone’s reaction to these drugs is different and with some drugs, it really is hard to pinpoint where the offending side effect is coming from. My guess is that at some point he’ll just be on Velcade for a week and that’s how I identified that drug as being one I don’t tolerate well. I would also encourage him to get involved with some mindfulness classes. I have learned that meditation and breathing properly really helps when the side effects are bad.