Amyloidosis

Overview

Mayo Clinic is one of a few medical centers in the United States studying the diagnosis and treatment of amyloidosis. More than 1,000 patients with amyloidosis were treated at Mayo Clinic in 2004. As a result of many years of research, Mayo Clinic offers a number of new therapies that are not widely available. These treatments range from stem cell transplantation, an area in which Mayo Clinic is among the most experienced in the world, to medications (not available commercially) which have shown promise in testing in Mayo Clinic's research laboratories. Mayo Clinic continually develops new clinical trials for the treatment of amyloidosis.

No one therapy is appropriate for all people. Different specialists work together to ensure that each person receives therapy appropriate for the extent and type of his or her disease. Each treatment team includes a specialist experienced in caring for people who have amyloidosis.

Diagnosis

Diagnosis of primary amyloidosis is based on finding amyloid deposits in organs or other body tissues. A physician will first perform a thorough physical examination to find out if the organs are functioning properly. Blood, urine and bone marrow tests may be done. A small tissue sample (biopsy) may be taken from the rectum, abdominal fat or bone marrow. These biopsies are relatively minor procedures done in an outpatient setting with a local anesthetic (numbing medication). Occasionally, biopsies are taken from the liver, nerve, heart or kidney to help diagnose the organ affected by amyloidosis. Such biopsies are done with a local anesthetic and sedation; rarely is hospitalization required. Only bone marrow tests or biopsies of tissue can positively establish the diagnosis of amyloidosis and classify the type.

Treatment Options

Treatment depends on which type of amyloid protein is present in the body, where it is being deposited and how it is affecting organ(s) and other tissues. Though there is no cure for amyloidosis, treatment targeting the cells which make protein may limit its further production and produce improvement in overall function. Read more about treatment of amyloidosis.

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About Primary Amyloidosis

Amyloid (pronounced am'-i-loyd) is an abnormal protein that may be deposited in the body's tissues or organs. Most often this abnormal protein comes from cells in the bone marrow. Amyloidosis (pronounced am-i-loy-do'-sis) results when enough amyloid protein builds up in one or more organs to cause the organ to malfunction. The heart, kidneys, nervous system and gastrointestinal tract are most often affected.

While amyloidosis has many types, the most common is a disease of the bone marrow called primary systemic amyloidosis. Bone marrow makes antibodies that protect against infection and disease. After performing their function, these antibodies are broken down and recycled by the body. In amyloidosis, cells in the bone marrow produce antibodies that cannot be broken down or recycled. These antibodies build up in the bloodstream. Ultimately, they leave the bloodstream and can deposit in tissues as amyloid. The disease can cause various symptoms depending on the organ affected.

Primary systemic amyloidosis is rare, affecting about eight persons per million annually. Its cause is unknown. It can affect anyone, but the majority of people who develop amyloidosis are over 40 years old, with 63 being the average age at diagnosis. Two-thirds of patients with primary amyloidosis are men. Amyloidosis may be disabling or life threatening.

Primary amyloidosis is not contagious or inherited. About 10 percent of patients who have multiple myeloma (a form of bone marrow cancer) develop amyloidosis. Although amyloid is an abnormal protein, diet and the amount of protein eaten play no role in the development of the disease. Also, there is no recognized link between amyloidosis and stress or occupation.