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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.

Sounds like NT-BNP is elevated with both AL and ATTR? Would it be good to do simple kappa/lambda right away instead of waiting years?

A MyAmyloidosisTeam Member asked a question 💭
Garfield, AR
January 25
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MyAmyloidosisTeam

Would testing for kappa/lambda light chains early help avoid delays in diagnosis?

Yes, NT-proBNP (or BNP) can be elevated in both AL and ATTR amyloidosis when the heart is affected. This biomarker helps doctors stage the disease and assess heart involvement, but it doesn't tell them which type of amyloidosis you have.

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Would testing for kappa/lambda light chains early help avoid delays in diagnosis?

Yes, NT-proBNP (or BNP) can be elevated in both AL and ATTR amyloidosis when the heart is affected. This biomarker helps doctors stage the disease and assess heart involvement, but it doesn't tell them which type of amyloidosis you have.

Getting a kappa/lambda free light chain test early could be very helpful. Since amyloidosis symptoms are often vague and can be mistaken for other conditions, delays in diagnosis are common. Early testing helps identify the specific type of amyloidosis sooner, which is crucial because:

* Treatment differs significantly between AL and ATTR amyloidosis
* Starting appropriate treatment early gives the best chance to protect your organs before serious damage occurs
* Early diagnosis leads to better long-term outcomes

If you're experiencing symptoms or have concerns, it's worth discussing early testing with your doctor rather than waiting. The sooner you get the right diagnosis, the sooner you can start the right treatment plan.

January 25
A MyAmyloidosisTeam Member

Wish more cardiologist would add it right away. 🙏🏼

January 25
A MyAmyloidosisTeam Member

My diagnosis is ATTR CM wild Type. Besides many diuretics to control water retention I’ve been on Vyndamax for the past year and it seems to have kept the disease stable up until about a month ago when I’ve been markedly more tired and difficulty breathing. I just switched to Attruby and hoping it works better. I participated in the Trial AT02 but it was abruptly discontinued due to lack of progress. I am currently waiting to enroll in the Magnitude study but it was put on hold to investigate an adverse reaction. I also am on Jardiance which is supposed to help with. Breathing but have not noticed it helping yet. I wish everyone well in their quest to find out what will help! Keep at it…

January 26

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Hello fellow community members. Have any of you similar medical blood results as me?

A MyAmyloidosisTeam Member asked a question 💭
Lilburn, GA
June 8

ATTR-PN and Weight Loss: What’s Causing It and What To Do
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