Amyloidosis Symptoms & Treatment
The Bradley Z. Naifeh Amyloidosis Treatment and Research Program at Houston Methodist J.C. Walter Jr. Transplant Center is a world leader in the diagnosis and management of amyloidosis, and our doctors see more cases of amyloidosis than most hospitals across the nation.
Amyloidosis is a rare, multisystem disease that develops when abnormally shaped proteins, called amyloid fibrils, are produced in the bone marrow or liver and then deposited in organs or tissue throughout the body, including the heart, kidneys, nerves and gastrointestinal tract. Amyloid fibrils can be deposited in different organs in different people. Over time, buildup of amyloid fibrils leads to organ damage and, ultimately, organ failure.
Houston Methodist has one the largest and most successful organ transplant programs in the nation for patients with amyloidosis. For patients with advanced organ failure, we offer single-organ, multi-organ and bone marrow transplants.
Collaborative, Cutting-edge Amyloidosis Care
At Houston Methodist, our amyloid program includes experts across many different specialties, including cardiology, gastroenterology, hepatology, hematology, pulmonology, neurology, nephrology and transplant surgery.
By combining quick and efficient diagnosis with advanced care, our experts ensure that patients receive the most effective treatment options as early as possible. Our goal is to diagnose and treat amyloidosis before it leads to life-threatening organ failure.
Expertise in Organ Transplant for Amyloidosis
If irreversible organ failure is present, our team has extensive experience performing bone marrow transplants as well as solid organ transplants, including heart, liver, kidney, lung and multi-organ transplants. Our experts are also leading the development of innovative transplant strategies to treat complex amyloidosis cases more effectively.
What are the types of amyloidosis?
There are five predominant types of amyloidosis:
- Systemic (AL) amyloidosis – caused by an abnormal antibody protein (called AL) that is produced in the bone marrow and can be deposited in many organs including the heart, kidneys, nerves and gastrointestinal tract.
- TTR amyloidosis – caused by an abnormal form of a protein called transthyretin that is produced in the liver and most commonly deposited in the heart and nerves. TTR can be hereditary or nonhereditary. Hereditary TTR amyloidosis is caused by one of over 130 known genetic mutations, all of which have a 50% chance of being passed to a child. Nonhereditary TTR amyloidosis occurs for unknown reasons with advanced age.
- Serum amyloid protein A (AA) amyloidosis – associated with chronic inflammatory diseases
- Dialysis-related amyloidosis – associated with chronic kidney disease and long-term kidney dialysis
- Organ specific amyloidosis – occurs when amyloid buildup is isolated to a single organ but can be caused by one of several different types of amyloids
What are the symptoms of amyloidosis?
While some symptoms are specific to the organ affected by the disease, general symptoms of amyloidosis include:
- Carpal tunnel syndrome (especially when in both wrists)
- Constipation and/or diarrhea
- Dizziness and low blood pressure when standing (orthostatic hypotension)
- Enlarged tongue (particularly in AL)
- Irregular heartbeat
- Numbness/tingling or pain in the hands, wrists or feet
- Inability to feel the difference between warm or cold in hands and feet
- Pain or cramping in legs when standing or walking that dissipates when sitting down or bending forward (spinal stenosis)
- Purple patches around the eyes (commonly referred to as “raccoon eyes”) (particularly in AL)
- Rupture of the bicep tendon
- Weight loss
Amyloidosis in the heart, also called, cardiac amyloidosis, can cause symptoms such as:
- Arrhythmia (abnormal beating of the heart) or palpitations
- Shortness of breath after physical exertion (or even at rest in later stages)
- Swelling of the legs or abdomen
- Passing out
Amyloidosis in the kidney can cause nephrotic syndrome — in which your body excretes too much protein in the urine — causing symptoms such as:
- Swelling in legs and around the eyes
- “Foamy” urine
- Weight gain
Amyloidosis in the nervous system can cause symptoms such as:
- Peripheral neuropathy with loss of sensation and muscle function
- Tingling, numbness, and loss of temperature sensation in hands and feet
- Orthostatic hypotension (or dizziness) and low blood pressure when standing
- Diarrhea and constipation
How is amyloidosis diagnosed?
Since amyloidosis can ultimately lead to organ damage, early diagnosis can reduce the extent of organ damage that occurs and may prevent the need for an organ transplant.
Tests used to diagnose amyloidosis include:
- Biopsy of the affected organ
- Blood tests
- Bone marrow aspiration and biopsy
- Imaging tests
For TTR amyloidosis, the diagnosis can often be made using noninvasive imaging coupled with genetic testing of blood or saliva, but sometimes will require cardiac biopsy.
How is amyloidosis treated?
Treatment for amyloidosis depends on the type of amyloidosis.
For patients with systemic (AL) amyloidosis, treatment targets the bone marrow production of the AL proteins that turn into amyloid fibrils, including certain types of chemotherapies. Sometimes, a bone marrow transplant is recommended to decrease the risk of disease recurrence.
For TTR amyloidosis, new treatment options that improve symptoms and outcomes have been recently approved. In addition, Houston Methodist has ongoing trials of new drugs that may have an additional benefit over and above the existing drugs.
For patients with cardiac symptoms, general treatment includes diuretics to prevent fluid buildup. Sometimes, blood thinners and other medications are recommended as well.
If an individual’s condition worsens to the point of organ failure, an organ transplant may be needed. Common types of transplants needed as a result of amyloidosis include:
Amyloidosis Patient Stories
Amyloidosis experts at Houston Methodist have helped many people — from Houston as well as throughout the nation — suffering from amyloidosis. Here are a few of their stories.
As a groundbreaking shooting guard and former coach of the Houston Rockets, Don Chaney, has taken on many challenges. Now, he’s taking on amyloidosis. Read Don’s story.
Three years after amyloidosis left him needing a multi-organ transplant, Walt McGuire ran a 400 meter race at the Transplant Games of America. Read Walt's story.
Vernon Roberson’s TTR amyloidosis left him needing a multi-organ transplant. Through a rare procedure called a domino transplant, Roberson received a new heart and liver. Read Vernon’s story.
DeBakey CV Live: Livestream Recording
Delayed autologous stem cell transplant following cardiac transplantation experience in patients with cardiac amyloidosis. Learn more.