Amyloidosis is a group of conditions that cause an abnormal protein called amyloid to build up in the body. Treatment depends on the type of amyloidosis but may include medications and organ transplants.

Amyloidosis is an inherited group of diseases caused by a deposit of excess amyloid. Doctors categorize the different types as either systemic or local. The condition can affect multiple organs, including the heart, kidneys, and digestive system.

Amyloid deposits can build up in the:

  • liver
  • spleen
  • kidney
  • heart
  • nerves
  • blood vessels

Sometimes, amyloid collects throughout your body. This is called systemic or body-wide amyloidosis. Amyloid deposits can eventually damage organs and cause them to fail. This condition is rare, but it can be serious.

Most forms of amyloidosis aren’t preventable. However, you can manage symptoms with treatment. Keep reading to learn more.

An infographic of the different symptoms of amyloidosis and where they affect a person's body. Share on Pinterest
Illustrated by Jason Hoffman

In its early stages, amyloidosis might not cause any symptoms. When the condition becomes more severe, the symptoms you experience depend on the type of amyloidosis you have and the organ or organs that are affected.

For example, if your heart is affected, you may experience:

  • shortness of breath
  • fast, slow, or irregular heart rate
  • chest pain
  • low blood pressure, which could cause lightheadedness

If your kidneys are affected, you may experience swelling in your legs due to fluid buildup (edema) or foamy urine from excess protein.

If your liver is affected, you may experience pain and swelling in the upper part of your abdomen.

If your gastrointestinal tract is affected, you may experience:

  • nausea
  • diarrhea
  • constipation
  • appetite loss
  • weight loss
  • feeling of fullness right after eating

If your nerves are affected, you may experience:

  • pain, numbness, and tingling in your hands, feet, and lower legs
  • dizziness when standing up
  • nausea
  • diarrhea
  • inability to feel cold or heat

General symptoms that can occur include:

  • fatigue
  • weakness
  • bruising around your eyes or on your skin
  • swollen tongue
  • joint pain
  • carpal tunnel syndrome, or numbness and tingling in your hands and thumb

Contact a doctor if you experience any of these symptoms for more than a day or two.

In general, amyloidosis is due to a buildup of amyloid in your organs. The organs or areas of the body affected depend on the type of amyloidosis you have.

Some types of amyloidosis are hereditary, while others can be brought on by:

  • an individual being on dialysis for a long time
  • certain inflammatory diseases

Because each type of amyloidosis may have a slightly different treatment, it’s important to get a proper diagnosis.

A simple way to understand the naming of the different types is that the “A” in most types stands for Amyloid. What follows the “A” is the specific type of amyloid protein involved.

Light chain (AL) amyloidosis

AL amyloidosis, otherwise known as immunoglobulin light chain amyloidosis, is one of the most common types of amyloidosis diagnoses in the United States. It used to be known as primary amyloidosis.

AL amyloidosis occurs when abnormal amyloid proteins called light chains build up in organs like the:

  • heart
  • kidneys
  • liver
  • nervous system
  • gastrointestinal tract

Autoimmune (AA) amyloidosis

This type of amyloidosis can develop after a chronic infection like tuberculosis or a disease that causes inflammation, such as rheumatoid arthritis or inflammatory bowel disease.

Approximately half of people with AA amyloidosis have rheumatoid arthritis. AA amyloidosis mainly affects your kidneys. Sometimes, it can also damage your intestines, liver, or heart. This type used to be called secondary amyloidosis.

Beta-2 Microglobulin amyloidosis (Abeta2m)

This type affects people who have received dialysis for a long period due to kidney problems. The amyloid deposits in the joints and tendons, causing pain and stiffness.

ATTR amyloidosis

This rare type of familial amyloidosis results from a mutation in a gene that runs in families. Hereditary amyloidosis can affect the:

  • nerves
  • heart
  • liver
  • kidneys

Localized amyloidosis (ALoc)

There are many types of localized amyloidosis. Typically, amyloid deposits in ALoc amyloidosis occur in the trachea or bronchus, eye, or bladder area. However, they can also be associated with endocrine proteins or proteins produced in the skin and heart.

Wild-type ATTR

Wild-type ATTR is related to the aging process, and a 2024 study of 1,251 people found older adult males most often received a diagnosis. However, new data is showing a rise in diagnoses for women and younger people.

The most common area of the body wild-type ATTR affects is the heart, and one of the first symptoms of this condition can be carpal tunnel syndrome.

Although anyone can get amyloidosis, certain factors can increase your risk. These include:

  • Age: People with AL amyloidosis, the most common type, tend to receive a diagnosis at age 50 to 65 years.
  • Sex: Even though experts believe that males and females can be equally affected by this condition, 60% of people referred to amyloid centers are male.
  • Race: African Americans are at greater risk of hereditary amyloidosis than other races.
  • Family history: Hereditary amyloidosis runs in families.
  • Medical history: Having a chronic infection or inflammatory disease can make you more likely to get AA amyloidosis.
  • Kidney health: If your kidneys are damaged and you need dialysis, you may be at increased risk. Dialysis may not remove big proteins from your blood as effectively as your own kidneys can.

Your doctor will ask about your symptoms and medical history. It’s important to tell your doctor as much as you can because amyloidosis symptoms can be similar to those of other conditions. Misdiagnosis is common.

Your doctor may use the following tests to help make a diagnosis:

  • Blood and urine tests: These tests can assess amyloid protein levels. Blood tests can also check your thyroid and liver function.
  • Echocardiogram: This imaging test uses sound waves to create pictures of your heart.
  • Biopsy: For this test, a doctor removes a sample of tissue from your liver, nerves, kidneys, heart, abdominal fat, or other organs. Analyzing the tissue can help your doctor determine what type of amyloid deposit you have.
  • Bone marrow aspiration and biopsy: Bone marrow aspiration uses a needle to remove a small amount of fluid from inside your bones. A bone marrow biopsy removes some of the tissue from inside your bone. These tests may take place together or separately. The samples undergo laboratory testing to check for abnormal cells.

If a doctor confirms a diagnosis, your doctor will determine which type you have. This can involve tests like immunochemical staining and protein electrophoresis.

Amyloidosis isn’t curable. Treatment aims to slow amyloid protein production and reduce symptoms.

General treatments

Doctors can use the following treatments to help manage amyloidosis symptoms:

  • pain relievers
  • drugs to manage diarrhea, nausea, and vomiting
  • diuretics to reduce fluid buildup in your body
  • blood thinners to prevent blood clots
  • medications to control your heart rate

Other treatments depend on the type of amyloidosis you have.

AL amyloidosis

Treatment for this this type requires chemotherapy. While these drugs are usually used to treat cancer, they destroy the abnormal blood cells that produce amyloid protein in amyloidosis.

After you have chemotherapy, you might have a stem cell or bone marrow transplant to replace the damaged bone marrow cells.

Other drugs you might get to treat AL amyloidosis include:

  • Proteasome inhibitors: These drugs block substances called proteasomes, which break down proteins.
  • Immunomodulators: These medications dampen an overactive immune system response.

AA amyloidosis

Treatment for this type depends on the cause. Antibiotics will treat bacterial infections. Medications to reduce inflammation can treat inflammatory conditions.

Beta-2 microglobulin amyloidosis

There are several hemodialysis techniques that can increase the removal of beta-2 microglobulin.

Another option is to have a kidney transplant.

ATTR amyloidosis

The liver makes the abnormal protein that causes ATTR amyloidosis. Therefore, you may need a liver transplant.

Amyloidosis can potentially damage any organ in which amyloid builds up, which is why a proper diagnosis and treatment are so important. Potential damage can include:

  • Heart damage: Amyloidosis interrupts your heart’s electrical system and makes it harder for your heart to beat effectively. Amyloid in the heart causes stiffness and weakening of the pumping action of the heart, which leads to shortness of breath and low blood pressure. Eventually, you could develop heart failure.
  • Kidney damage: Damage to the filters inside your kidneys can make it harder for these bean-shaped organs to remove wastes from your blood. Eventually, your kidneys may become overworked, and you could develop kidney failure.
  • Nerve damage: When amyloid builds up in nerves and damages them, you might feel sensations like numbness or tingling in your fingers and toes. This condition can also affect other nerves — like those that control your bowel function or blood pressure.

Amyloidosis is the name for several conditions caused by a buildup of the amyloid protein. Some of these conditions are hereditary, and some are due to chronic infection or autoimmune issues.

Amyloidosis isn’t curable, but many types are manageable with treatment.

You can talk with your doctor about your treatment options, especially if you find that your current treatment plan isn’t working. Your doctor can work with you to make adjustments as needed to help reduce your symptoms and improve your quality of life.