AL amyloidosis is a common type of amyloidosis and involves proteins called light chains.
Light chains are parts of antibodies, which help your body fight infections. These light chains are made by plasma cells in the bone marrow.
In AL amyloidosis, some plasma cells produce too many abnormal light chains. Instead of working properly, these proteins fold the wrong way and build up as amyloid deposits in different organs, which can cause problems.
Watch this 3D animated overview of AL Amyloidosis:
You can download and print our AL Amyloidosis Overview packet by clicking here.
In this video, nurse practitioner Tracy Joshi, DNP from the Amyloidosis Center at Boston Medical Center explains what AL amyloidosis is and how it affects the body.
You can download the slides from the video above by clicking here.
Diagnosis, Symptoms, and Treatment
If AL amyloidosis is suspected, doctors will usually take a small sample of tissue (called a biopsy) to check for amyloid deposits. Blood and urine tests can measure how many abnormal light chains are in your body. A bone marrow biopsy is also done to see if there are abnormal plasma cells.
You might have other tests like heart scans (echocardiograms, EKGs, or MRIs) and imaging to check if amyloid has affected your heart, kidneys, or other organs. Sometimes, biopsies of these organs are needed to see if amyloid is present.
Symptoms and problems from AL amyloidosis can be different for each person. It depends on which organs are affected and how much damage the amyloid deposits cause. Amyloid can affect any organ except the brain. Signs and symptoms may include:
- Swelling of your ankles and legs
- Fatigue and weakness
- Shortness of breath
- Numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome)
- Diarrhea, possibly with blood, or constipation
- Unintentional, significant weight loss
- An enlarged tongue
- Skin changes, such as thickening or easy bruising, and purplish patches around the eyes
- An irregular heartbeat
- Difficulty swallowing
Treatment for AL Amyloidosis involved reducing the level of abnormal plasma cells to stop the production of abnormal light chain, to improve organ function and quality of life.
Your age, overall health, and how much organ damage you have will all be considered when planning your treatment. Most often, doctors use a combination of different medicines. Many treatments are like those used for multiple myeloma, a related condition. Some possible treatment options include:
- Autologous blood stem cell transplant (ASCT) in some patients
- Chemotherapy e.g. cyclophosphamide or melphalan
- Steroid e.g. dexamethasone or prednisone
- Proteasome inhibitor e.g. bortezomib or ixazomib
- Immunomodulatory drug e.g. lenalidomide or pomalidomide
- Monoclonal Antibodies e.g. daratumumab
Supportive treatments help your organs work better, improve your quality of life, and help you feel more comfortable while the main treatment (which targets the abnormal plasma cells) starts to work.
In this video, Sascha Tuchman, MD from UNC Chapel Hill gives an overview of AL amyloidosis treatments.
You can download the slides from Dr. Tuchman’s video above by clicking here.
My Amyloidosis Pathfinder
Find, compare, and contact the treatment centers that fit your personal needs with ARC’s online My Amyloidosis Pathfinder (MAP) tool. Your personalized MAP profile will connect you to the centers and clinical trials that match what you’re looking for.
Additional Support
Finding the right support is important to help you manage your care. Talking to people who listen and answer your questions is a key part of feeling well. At ARC, we’re here to provide resources and information to guide you on your journey—you don’t have to face this alone. There are also many support groups around the world where you can connect with others who understand. Find a support group and find out more about our PEER Link program.
