Question 1

What is Primary Amyloidosis?

Accepted Answer

Primary amyloidosis is a rare disorder where abnormal proteins called amyloid fibrils accumulate in organs and tissues throughout the body. It is caused by plasma cells in the bone marrow producing excessive amounts of abnormal immunoglobulin light chains, particularly kappa and lambda free light chains. The Kappa/Lambda Light Chains, Free with Ratio test is the most important test for diagnosis because it detects these abnormal proteins in the blood and identifies imbalances that indicate disease activity.

Question 2

What causes primary amyloidosis?

Accepted Answer

Primary amyloidosis is caused by plasma cells in the bone marrow producing excessive amounts of abnormal immunoglobulin light chains, specifically kappa and lambda free light chains. These abnormal proteins misfold and clump together to form amyloid fibrils that deposit in various organs and tissues throughout the body, including the heart, kidneys, liver, nerves, and digestive system. Unlike secondary amyloidosis, which results from chronic inflammatory conditions, primary amyloidosis occurs without an underlying disease and is related to a disorder of plasma cells similar to multiple myeloma.

Question 3

What is the best test for primary amyloidosis?

Accepted Answer

The Kappa/Lambda Light Chains, Free with Ratio test is the most important blood test for primary amyloidosis because it directly measures the abnormal free light chain proteins that cause this disorder. This test detects elevated levels of kappa or lambda free light chains in the blood and calculates the ratio between them, with an abnormal ratio being a key indicator of disease presence and activity. While tissue biopsy remains necessary for definitive diagnosis, this blood test is essential for initial screening, monitoring disease progression, and evaluating treatment response. Your healthcare provider may also order additional tests such as serum protein electrophoresis and immunofixation to further characterize the abnormal proteins.

Question 4

When should I get tested for primary amyloidosis?

Accepted Answer

You should get tested if you experience unexplained symptoms such as persistent fatigue, significant unintentional weight loss, swelling in your legs and ankles, shortness of breath, numbness or tingling in your hands and feet, or an enlarged tongue. Testing is particularly important if you have unexplained kidney problems, heart failure symptoms in the absence of typical heart disease, or if your doctor has detected abnormal proteins in your urine. Early detection through blood testing can help initiate treatment sooner and potentially slow the progression of organ damage.

Question 5

What are the symptoms of primary amyloidosis?

Accepted Answer

Primary amyloidosis symptoms vary depending on which organs are affected by amyloid deposits. Common symptoms include severe fatigue, significant weight loss, swelling in the ankles and legs, shortness of breath, weakness, numbness or tingling in the hands and feet, diarrhea or constipation, an enlarged tongue with indentations from teeth, skin changes such as easy bruising or purplish patches around the eyes, and irregular heartbeat. Some people also experience carpal tunnel syndrome, difficulty swallowing, or hoarseness. Because symptoms can be vague and develop gradually, the condition is often diagnosed late, making awareness of these warning signs crucial.

Question 6

Who is at risk for primary amyloidosis?

Accepted Answer

Primary amyloidosis most commonly affects people over age 60, with men being diagnosed more frequently than women. The condition is more prevalent in Caucasians compared to other ethnic groups. People with a history of multiple myeloma or other plasma cell disorders have an increased risk. However, primary amyloidosis often occurs in people with no known risk factors or family history. While the exact cause remains unknown, certain genetic factors may increase susceptibility. Unlike hereditary forms of amyloidosis that run in families, primary amyloidosis is not considered an inherited condition.

Question 7

What happens if primary amyloidosis is left untreated?

Accepted Answer

Untreated primary amyloidosis leads to progressive organ damage that can be life-threatening. As amyloid deposits accumulate in the heart, they cause restrictive cardiomyopathy and heart failure, which is the leading cause of death in primary amyloidosis patients. Kidney involvement leads to progressive kidney failure requiring dialysis. Nerve damage causes worsening peripheral neuropathy and autonomic dysfunction, affecting blood pressure regulation and digestive function. The liver and spleen can become enlarged and dysfunctional. Without treatment, the median survival is typically 12-18 months after diagnosis, but with early detection and appropriate treatment, outcomes can be significantly improved and organ function preserved.

Question 8

Can primary amyloidosis be diagnosed with a blood test?

Accepted Answer

Blood tests are essential screening tools for primary amyloidosis but cannot provide a definitive diagnosis alone. The Kappa/Lambda Light Chains, Free with Ratio test detects abnormal proteins in the blood that strongly suggest primary amyloidosis, while serum protein electrophoresis and immunofixation can identify abnormal protein patterns. However, definitive diagnosis requires a tissue biopsy showing amyloid deposits, typically from abdominal fat pad, bone marrow, or an affected organ. Blood tests are invaluable for initial screening, guiding the need for biopsy, monitoring disease activity, and assessing treatment response throughout the course of the disease.

Question 9

How is primary amyloidosis treated?

Accepted Answer

Primary amyloidosis treatment focuses on eliminating the abnormal plasma cells that produce the harmful proteins and managing organ damage. The main treatment approach uses chemotherapy drugs similar to those for multiple myeloma, including combinations like melphalan with dexamethasone, bortezomib-based regimens, or lenalidomide protocols. For eligible patients, high-dose chemotherapy followed by autologous stem cell transplantation can be highly effective. Newer targeted therapies and immunotherapies are increasingly used. Supportive care manages organ-specific complications, such as diuretics for heart failure, dialysis for kidney failure, and medications for neuropathy. Treatment must be individualized based on which organs are affected and the extent of damage.

Question 10

How can I prevent primary amyloidosis?

Accepted Answer

Primary amyloidosis cannot be prevented because it results from a spontaneous abnormality in plasma cells with no known preventable cause. Unlike secondary amyloidosis, which can sometimes be prevented by managing underlying inflammatory conditions, primary amyloidosis occurs without warning or identifiable triggers. There are no lifestyle changes, dietary modifications, or screening programs for the general population that can prevent this condition. However, if you have a plasma cell disorder like multiple myeloma, working closely with your healthcare provider for monitoring and treatment may help detect related problems early. The best approach is awareness of symptoms for early detection and prompt treatment.

Question 11

What can I do at home for primary amyloidosis?

Accepted Answer

While primary amyloidosis requires medical treatment, several home strategies can support overall health and quality of life. Maintain a heart-healthy diet low in sodium to help manage fluid retention and reduce strain on the heart and kidneys. Stay as physically active as your condition allows, with gentle exercises like walking to maintain strength and mobility. Monitor your weight daily and report rapid changes to your doctor, as this can indicate fluid retention. Get adequate rest and pace activities to manage fatigue. Avoid NSAIDs like ibuprofen, which can worsen kidney function. Work with a nutritionist if you have digestive symptoms or malnutrition concerns. Keep all medical appointments and report new symptoms promptly, as early intervention for complications improves outcomes.

Question 12

How’s this work?

Accepted Answer

Getting your blood test with us is easy, private & backed by the power of science.Long story short:
            
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Question 13

How do I know which test to get?

Accepted Answer

In the test options, find the test you want.
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Question 14

When will my lab results be available?

Accepted Answer

Most test results will be available within 1–3 business days. Once they're ready, we'll send an email and text message to let you know.
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Question 15

Is it possible to make changes to my lab order if I made a mistake with the name, date of birth, or any other details?

Accepted Answer

Absolutely! We totally understand that errors can happen. No worries, we're here to help you.
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            Our lab requires an address to be listed to generate an order.

Question 16

Do you accept health insurance?

Accepted Answer

Only HSA & FSA is accepted.
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Question 17

Can I cancel my order?

Accepted Answer

Yes.
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Question 18

How can I find a lab location near me?

Accepted Answer

During the ordering process, you’ll be able to select a specific lab near you, with no strings attached!
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Primary Amyloidosis Blood Test

What is Primary Amyloidosis?

What causes primary amyloidosis?

What is the best test for primary amyloidosis?

When should I get tested for primary amyloidosis?

References

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