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AL Amyloidosis

AL amyloidosis is a form of cancer that happens when abnormal proteins build up in your organs. The Washington University Amyloid Center is among the few places in the country capable of treating this rare condition. Our experienced team offers leading-edge treatments to help improve your symptoms.

What Is AL (Primary) Amyloidosis?

AL amyloidosis (also known as primary amyloidosis) starts in the bone marrow, the soft tissue inside your bones. Bone marrow makes all of your blood cells, including cells that create antibodies to fight infections. 

These cells can grow abnormally, causing a type of protein called light chains. If you have AL amyloidosis, the light chains clump together and form amyloid deposits in your organs.

Amyloid deposits can become so severe they cause organ failure, which is when your organs stop working effectively. While there is no cure for AL amyloidosis, treatment can slow the formation of deposits and lower your risk for organ failure.

AL Amyloidosis Diagnosis and Treatment: Why Choose Us?

You receive care from doctors who are nationally recognized amyloidosis experts. We are advancing amyloidosis care through research, including testing new treatments in clinical trials. You benefit from the latest treatments and receive care from some of the top doctors in the field. 

At our center, you’ll find:

  • Team approach: Our team includes Washington University Physicians specializing in cancer care, bone marrow disorders, nephrology and cardiology. Our doctors have years of experience caring for patients with AL amyloidosis. We work together to detect the earliest signs so you can avoid complications. We meet regularly to coordinate care that addresses all of your symptoms, helping you feel better. Meet our team.
  • Access to clinical trials: We are often among the first places in the country offering clinical trials for amyloidosis. These studies may include new approaches to diagnosing the disease and medications that give you more options for healing.
  • Personalized care: We perform thorough evaluations, including tests that confirm or rule out amyloidosis. Our doctors use this information to tailor care to your needs. We monitor your response to treatments, so you receive timely care, even if your needs change. Learn more about amyloidosis diagnosis and treatment.  

AL Amyloidosis Symptoms

Light chain amyloid deposits occur gradually, which is why you may not notice symptoms at first. People typically start noticing signs of amyloidosis as older adults. The symptoms you experience depend on where the amyloid deposits occur. You may experience symptoms in multiple areas of your body.

With AL amyloidosis, light chain deposits often affect the:

Heart

If the buildups are in the heart, there may be:

Kidneys 

Light chain proteins in the kidneys may cause damage leading to nephrotic syndrome

Nephrotic syndrome may cause:  

  • Protein in the urine
  • Swelling in your arms, legs, lungs or stomach
  • Kidney failure

Digestive System

If AL amyloidosis affects your digestive system, you may have:

Nerves 

Light chain buildups can cause nerve damage resulting in:

  • Numbness
  • A loss of sensitivity to hot and cold
  • Dizziness when moving from a seated to a standing position

Other Symptoms

Other symptoms of AL amyloidosis may include:

  • An enlarged tongue
  • Purpura, which causes the skin around the eyes to become unusually dark
  • Ongoing tiredness (fatigue) 

AL Amyloidosis Evaluation

We perform a detailed evaluation to learn more about your health history and symptoms. 

We also perform tests that may include:

  • 24-hour urine test: This test confirms whether you have signs of nephrotic syndrome, such as protein in your urine. You deposit all of your urine over 24 hours in a special container. We run tests to check for traces of protein.
  • Bone marrow biopsy: If the 24-hour urine test is positive for nephrotic syndrome, a bone marrow biopsy can confirm an amyloidosis diagnosis. We take a sample of bone marrow tissue and examine it under a microscope.
  • Biopsies of other organs: If the results of the bone marrow biopsy are negative for amyloidosis, we may biopsy other organs to confirm a diagnosis. If you have signs of heart damage, we biopsy heart tissue.
  • Blood tests: We analyze a sample of your blood to check for signs of heart damage. If we detect problems, you receive care from Washington University Physicians specializing in cardio-oncology. These specialists treat heart problems that occur in people with cancer. Read more about cardio-oncology.

Treating AL Amyloidosis

An accurate diagnosis helps us deliver the treatments that best meet your needs. We tailor treatments to help you feel better while protecting your organs from further damage. 

Your care may include:

  • Medications: Most people with AL amyloidosis receive some form of chemotherapy. You may receive targeted therapies, medications that target and destroy the cells that make the abnormal light chain proteins. Your care may also include medications that slow the rate at which amyloids build up in your organs. In addition, clinical trials targeting the amyloid deposits may be available.
  • Stem cell (bone marrow) transplant:  We replace amyloid-producing bone marrow cells with a sample of your cells that has been treated with chemotherapy. This treatment helps you get rid of more of the amyloid-producing cells in the bone marrow.
  • Treatments that relieve symptoms (supportive care): We recommend treatments that ease discomfort and help your body cope with amyloid deposits. The treatments that are right for you depend on which organs have amyloid buildups and the symptoms you are experiencing.

Contact Us

To make an appointment with a Washington University amyloidosis specialist at Barnes-Jewish Hospital, call 888.969.4806.

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