Patient education: AL amyloidosis (The Basics)

What is AL amyloidosis? — AL amyloidosis is 1 type of amyloidosis, which is the buildup of abnormal proteins (called "amyloid") in the body. These proteins build up in different organs, which can lead to problems.

There are different types of amyloidosis, depending on which protein is abnormal. This type involves a type of protein called "light chains." In AL amyloidosis, the "A" is for amyloidosis and the "L" is for light chains. Doctors also call it "immunoglobulin light chain amyloidosis." Normal light chains are used to make antibodies, which help the body fight infections. In AL amyloidosis, cells in the bone marrow (the tissue inside of your bones that makes blood cells) make abnormal light chains. These abnormal light chains can build up in the kidneys, heart, liver, and other organs.

AL amyloidosis mostly affects older adults, and is more common in males than in females.

Sometimes, AL amyloidosis is related to another problem, such as:

●Multiple myeloma, which is a cancer of a type of white blood cell called "plasma cells"

●Waldenström macroglobulinemia, which is a problem with another type of cell made in the bone marrow

Not everyone with AL amyloidosis has one of these other problems. Your doctor will do tests to check for them.

What are the symptoms of AL amyloidosis? — Different people get different symptoms. They might include:

●Feeling very tired

●Losing weight without trying to

●Swelling in the feet, ankles, legs, or belly

●Shortness of breath

●Numbness or tingling in the hands or feet

●A large tongue

●Skin that bruises easily

●Purple or bruised-looking skin around the eyes

●Bleeding more than usual, for example, after an injury

AL amyloidosis can affect multiple organs. But in some people, it only affects 1 organ. Commonly affected organs include the:

●Kidneys – Problems with the kidneys can lead to too much protein in the urine. Kidney problems can also cause fluid to build up in the body, which leads to swelling. The kidneys might not work as well as they should, which can lead to kidney failure (when they stop working completely).

●Heart – The heart might have trouble pumping blood normally. This can lead to symptoms of heart failure, such as swelling or trouble breathing. Some people also have an abnormal heartbeat.

●Liver – The liver might be larger than normal.

Is there a test for AL amyloidosis? — Yes. If you have symptoms of AL amyloidosis, your doctor or nurse will do an exam and tests. Some tests look for the abnormal protein that people with AL amyloidosis have. Other tests check for problems with your organs.

Tests include:

●Urine tests

●Blood tests

●Biopsy – For this test, a doctor takes a small sample of tissue and then looks at it with a microscope. Your doctor might do a biopsy of your bone marrow plus a biopsy from your belly area. In some cases, they will do a biopsy from a different organ.

●Imaging tests – Imaging tests create pictures of the inside of the body. Your doctor might suggest imaging tests to look at your internal organs. For example, you might get an echocardiogram (also called an "echo") to check your heart or an ultrasound to check your liver.

Your doctor might suggest other tests, too, depending on your symptoms. This might seem like a lot of tests. But it's important for your doctor to know for sure if you have amyloidosis and which type. That's because AL amyloidosis is treated differently from other types.

How is AL amyloidosis treated? — There is no cure for AL amyloidosis. But treatment can help reduce symptoms, and help you live longer. Treatment options include chemotherapy and antibodies. Some people might also need a bone marrow transplant. But this is not an option for everybody.

Before starting treatment, you will need tests. In addition to the tests above, which can tell your doctor that you have AL amyloidosis, you will get other tests. These are so your doctor can see which of your organs are affected, and how much damage there is. They can also check for other problems that might need treatment.

Your treatments might include:

●Chemotherapy – This is the medical term for medicines that kill cancer cells or stop them from growing. These medicines can also stop growth of the cells that make the abnormal protein in AL amyloidosis.

●Antibodies – Antibodies are proteins in the blood. Your immune system makes them to help the body fight infections. But there are other types of antibodies that are created in a lab and used as medicine. They kill the cells that make the abnormal protein in AL amyloidosis.

●Bone marrow transplant – This procedure replaces the abnormal cells in your bone marrow with healthy cells. It is also called a "stem cell transplant." When this is done to treat AL amyloidosis, the "donor cells" come from your own body. Stem cells are removed from your blood, then you get chemotherapy to kill the abnormal cells in your bone marrow. After that, your stem cells are returned to your body through a vein. The new stem cells help replace the cells that were destroyed by chemotherapy and grow into healthy bone marrow.

Your doctor or nurse might also talk with you about being in a clinical trial. A clinical trial is a research study that uses volunteers to test new treatments.

After treatment, your doctor will do regular tests to see if the amount of abnormal protein in your body has gone down. They will also do tests to check if the problems with your organs have gotten better. If not, your doctor might suggest trying a different medicine or combination of medicines.

More on this topic

Patient education: Monoclonal gammopathy of undetermined significance (The Basics)
Patient education: Multiple myeloma (The Basics)
Patient education: What are clinical trials? (The Basics)
Patient education: Autologous bone marrow transplant (The Basics)