Connect with others who understand.

sign up log in
Resources
About MyAmyloidosisTeam

Connect with others who understand.

sign up log in
Resources
About MyAmyloidosisTeam

Symptoms of Amyloidosis

Posted on April 01, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Maureen McNulty

Amyloidosis is a rare disease that can cause a wide variety of symptoms. In amyloidosis, plasma cells (a type of white blood cell) produce an abnormal protein called amyloid. Amyloid clumps together, creating amyloid fibrils in any organ or area of the body. Where these fibrils form can affect which symptoms you experience. For example, if amyloid proteins collect in the heart, you will be more likely to have cardiac symptoms.

Types of Amyloidosis

Different types of amyloidosis lead to unique sets of symptoms.

In AL amyloidosis, also called amyloid light-chain amyloidosis or primary amyloidosis, the amyloid proteins involved are known as light-chain proteins. AL amyloidosis can affect many parts of the body, including the kidneys, heart, skin, digestive system, and nervous system. AL amyloidosis is the most common type of amyloidosis.

AA amyloidosis, also called secondary amyloidosis, typically causes problems with the kidneys. It can also affect the heart, liver, or digestive system. AA amyloidosis is usually caused by an underlying disease, like rheumatoid arthritis or inflammatory bowel disease.

Hereditary amyloidosis leads to problems with the heart, nervous system, or both. Hereditary amyloidosis is caused by genetic mutations, and different gene changes can lead to problems with various parts of the body.

Wild-type ATTR amyloidosis forms when the body makes too much transthyretin (TTR) protein. Wild-type amyloidosis typically leads to problems with the heart and occasionally the nerves.

Dialysis-related amyloidosis usually affects the joints, tendons, and bones. Some people may also experience problems in the digestive system, lungs, or heart.

Read more about types of amyloidosis.

General Symptoms

Amyloidosis can affect specific organs or organ systems, each of which can result in individualized symptoms. However, many people with amyloidosis have more general symptoms as well, including:

  • Extreme tiredness
  • Unexpected weight loss
  • Low numbers of red blood cells (anemia)
  • Abnormal bleeding
  • Muscle weakness
  • Bladder incontinence
  • Blood in the stool or urine
  • Stiff or painful joints
  • Hoarseness
  • Frequent infections

These symptoms can also be common in many other diseases and health conditions. Having these symptoms does not necessarily mean you have amyloidosis.

People may have amyloidosis symptoms for up to two years before they get a diagnosis. Additionally, some people with amyloidosis don’t experience any major symptoms.

Kidney Symptoms

The kidneys are the organs most likely to be affected by amyloidosis. Signs and symptoms of kidney problems may include:

  • Too much protein in the urine
  • Bloating in the abdomen
  • Swelling in the legs
  • High cholesterol levels

Heart Symptoms

When amyloid proteins collect in the heart, they can stiffen it and make it harder for the heart to pump blood around the body. People with heart-related amyloid symptoms may have:

  • Chest pain
  • Arrhythmia (irregular heartbeat)
  • Sleeping problems
  • Dizziness
  • Shortness of breath

Skin Symptoms

About 30 percent to 40 percent of people with AL amyloidosis have skin symptoms. However, these symptoms are less common in people with other types of amyloidosis.

Small spots that indicate bleeding under the skin are the most common skin symptoms for people with amyloidosis. There are two types of spots that may occur. Petechiae are small red or purple spots, while ecchymoses are flat, slightly larger, bluish-purple spots. Together, both of these types of spots are called purpura.

Other skin-related symptoms that may develop in people with AL amyloidosis include:

  • Blisters filled with blood
  • Areas of skin that are thick, scaly, or itchy
  • Hard, brittle nails
  • Waxy bumps on the eyelids, neck, or groin
  • Hair loss
  • Swelling or bruising around the eyes
  • Jaundice (yellowish skin)

Most types of amyloidosis affect the entire body. However, in some cases, this disease is only found in one specific area. Some types of amyloidosis only affect the skin. There are several skin-specific forms of amyloidosis:

  • Lichen amyloidosis causes a very itchy, scaly, reddish-brownish rash on the feet, legs, and arms.
  • Macular amyloidosis leads to itchy, flat, brown or gray spots on the upper back and chest.
  • Nodular amyloidosis causes firm spots on the trunk, arms, legs, face, or genitals that may be pink, brown, or red.
  • Amyloidosis cutis dyschromia leads to lighter or darker patches of skin.

Gastrointestinal Symptoms

More rarely, amyloidosis can affect the gastrointestinal (GI) tract, also called the digestive system. Studies have found that between 3 percent and 16 percent of people with amyloidosis have GI symptoms. These symptoms may be caused by amyloid proteins within the digestive organs themselves, or by amyloid within the muscles, nerves, or blood vessels that help the GI tract work correctly.

The mouth can be affected by amyloidosis. Some people with this condition develop a large, hard tongue that is covered with spots or blisters (macroglossia). This may lead to:

  • Pain in the tongue
  • Problems chewing
  • Difficulty swallowing

People with amyloidosis may experience esophagus problems. Your esophagus is the tube that leads from your mouth to your stomach. Amyloidosis can cause acid reflux, which causes stomach acid to come back up through your esophagus. This can cause a feeling of pain or burning in the chest. Additionally, people with amyloidosis may have problems with food getting stuck in the esophagus.

Amyloidosis can also cause stomach symptoms. Some of the more common ones are:

  • Nausea
  • Vomiting
  • Belly pain
  • Abdominal swelling or bloating
  • Feeling full after not eating very much
  • Loss of appetite

Amyloid can build up in the intestines as well. Your small intestine helps break down food and absorb its nutrients, and your large intestine absorbs water and gets rid of leftover waste. Intestinal amyloidosis symptoms can include:

  • Difficulty digesting food
  • Excessive gas
  • Diarrhea
  • Constipation
  • Bulky, greasy stools
  • Bowel incontinence (leakage of stool or loss of bowel control)
  • Rectal bleeding or blood in the stool

Neurological Symptoms

Amyloid protein deposits can build up in the nerves, which are long cells that send messages back and forth between the brain and the rest of the body. In some cases of AL and hereditary amyloidosis, nerve problems are the main symptom. One of the most common issues is peripheral neuropathy, or nerve damage that causes numbness or tingling. Carpal tunnel syndrome, a common form of neuropathy, causes numbness, weakness, tingling, or pain in the arm and hand. Carpal tunnel may be seen in many types of amyloidosis.

Other nervous system symptoms may include:

  • Decreased sweating
  • Postural hypotension (when you stand, your blood pressure drops and you feel dizzy)
  • Fainting
  • Loss of taste
  • Erectile dysfunction
  • Insensitivity to pain, cold, or heat

Amyloidosis may also affect the brain, causing symptoms such as headache, tiredness, dizziness, confusion, memory problems, vision changes, speech problems, or seizures.

Pain

For some people, amyloidosis can lead to pain in specific areas or throughout the body. Some common issues include:

  • Abdominal pain
  • Chest pain
  • Hand pain
  • Headache
  • Joint pain
  • Lower back pain
  • Pain in the back of the leg
  • Shoulder pain
  • Tongue pain

Swelling

When amyloid builds up in a certain location, it can make that area swell or get bigger. For example, some people with amyloidosis have swollen shoulders or an enlarged tongue. Some people also have swollen joints because amyloid deposits collect in the joint lining. This symptom is most common in AL amyloidosis and dialysis-related amyloidosis.

Getting Help for Symptoms of Amyloidosis

If you have symptoms compatible with amyloidosis, your doctor may want to run tests to get a closer look. Your physician may perform a physical exam and run blood tests or urine tests to look for signs of this disease. If your doctor thinks you may have a hereditary form of amyloidosis, they may ask you about your family history to see whether any other family members have similar symptoms. It may also be necessary to get a biopsy to definitively diagnose amyloidosis.

Read more about how amyloidosis is diagnosed.

Many symptoms of amyloidosis are general and may be associated with a wide range of other health conditions. Some health conditions commonly overlap in people with amyloidosis, so your doctor may first need to determine which condition is causing your symptoms, or whether one condition is worsening the symptoms of another.

Read more about other health conditions related to amyloidosis.

Which amyloidosis symptoms you experience can influence the specific treatments you are offered. Many treatment options are available that can help reduce symptoms and improve your quality of life.

Read more about treatments for amyloidosis.

Amyloidosis Condition Guide

All updates must be accompanied by text or a picture.
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Maureen McNulty studied molecular genetics and English at Ohio State University. Learn more about her here.

Related articles

Amyloidosis is a rare condition that occurs when amyloid, an abnormal protein, builds up in the...

How Does Amyloidosis Affect the Skin?

Amyloidosis is a rare condition that occurs when amyloid, an abnormal protein, builds up in the...
Amyloidosis is a rare disease caused by the buildup of abnormal proteins (amyloids) in the organs...

Does Amyloidosis Cause Weight Gain?

Amyloidosis is a rare disease caused by the buildup of abnormal proteins (amyloids) in the organs...
Amyloidosis occurs when abnormal proteins, called amyloids, build up in the blood. Amyloids can...

Symptoms of Cardiac Amyloidosis

Amyloidosis occurs when abnormal proteins, called amyloids, build up in the blood. Amyloids can...
Rarely, joint pain may be a symptom of amyloidosis. Amyloidosis-related joint pain may be...

Does Amyloidosis Cause Joint Pain?

Rarely, joint pain may be a symptom of amyloidosis. Amyloidosis-related joint pain may be...
Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your...

Does Amyloidosis Affect the Eyes?

Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your...
People with amyloid light-chain (AL) amyloidosis may have amyloid deposits in one or more organs...

Organ Damage and AL Amyloidosis

People with amyloid light-chain (AL) amyloidosis may have amyloid deposits in one or more organs...

Recent articles

Although life with amyloidosis can present a variety of challenges, people diagnosed with the...

Living With Amyloidosis

Although life with amyloidosis can present a variety of challenges, people diagnosed with the...
While a diet can’t cause, prevent, or treat your amyloidosis, eating healthy may help you avoid...

Eating a Healthy Diet With Amyloidosis

While a diet can’t cause, prevent, or treat your amyloidosis, eating healthy may help you avoid...
Amyloidosis isn’t caused by foods that a person eats. Diet changes can’t prevent or treat this...

Foods To Avoid With Amyloidosis

Amyloidosis isn’t caused by foods that a person eats. Diet changes can’t prevent or treat this...
People with amyloidosis may be eligible for additional doses of the Pfizer and Moderna COVID-19...

Are People With Amyloidosis Eligible for Moderna and Johnson & Johnson Booster Shots?

People with amyloidosis may be eligible for additional doses of the Pfizer and Moderna COVID-19...
It takes a village to support living with a chronic condition like amyloidosis. Whether other...

Find Your People on MyAmyloidosisTeam

It takes a village to support living with a chronic condition like amyloidosis. Whether other...
You can never ask too many questions on MyAmyloidosisTeam. Other members are here to support you,...

Share and Receive on MyAmyloidosisTeam

You can never ask too many questions on MyAmyloidosisTeam. Other members are here to support you,...
MyAmyloidosisTeam My amyloidosis Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close