Amyloidosis: symptoms and causes

Amyloidosis is a group of rare conditions where a protein called amyloid builds up in your body. It can affect organs such as your heart, kidneys, liver, nerves or digestive system. It cannot be cured, but there are treatments that may help with symptoms.

Symptoms of amyloidosis

Common symptoms of amyloidosis include:

feeling very tired or weak
losing weight without trying to
shortness of breath
swollen feet or legs
bruising around your eyes

Other symptoms depend on which parts of your body are affected, so you may not have all the symptoms. They can include:

a fast or slow heartbeat or chest pain, if your heart is affected
loss of appetite, feeling or being sick, diarrhoea or constipation, if your digestive system is affected
frothy pee, if your kidneys are affected
pain, numbness or tingling in your hands and feet, if your nerves are affected

Important

These symptoms can be caused by many different conditions. Having them does not definitely mean you have amyloidosis. But it's important to get them checked by a GP.

See a GP if:

you have symptoms of amyloidosis

How you get amyloidosis

There are several types of amyloidosis, with different causes.

Causes of the main types of amyloidosis
Type	Cause
AL amyloidosis	A problem with your bone marrow. Sometimes linked with multiple myeloma, a type of bone marrow cancer.
AA amyloidosis	Long-term inflammatory conditions such as rheumatoid arthritis, Crohn's disease or ulcerative colitis, or infectious diseases such as tuberculosis (TB).
Hereditary ATTR amyloidosis	An inherited genetic condition.
Wild-type ATTR amyloidosis	Develops as you get older, usually affecting men over 75 years old.
Beta-2 microglobulin amyloidosis	Having long-term dialysis.

Tests for amyloidosis

If a GP thinks you may have amyloidosis they'll refer you to a specialist. You may be seen in a specialist amyloidosis treatment centre.

Amyloidosis is often hard to diagnose because the symptoms vary and are similar to other conditions.

You'll usually have tests such as:

blood tests and urine tests
tests such as an electrocardiogram (ECG), echocardiogram or MRI scan, to check your heart and other organs
a biopsy, where a small sample of cells is removed and tested to check for amyloid
a type of scan called a SAP scan, to show where amyloid has built up in your body
genetic testing to find out if you have a hereditary type of amyloidosis

These tests will show what type of amyloidosis you have and how it's affecting you.

Treatments for amyloidosis

There's no cure for amyloidosis, but some types can be managed well through treatment to improve the symptoms. But for some people, amyloidosis eventually leads to organs such as your heart or kidneys no longer working properly.

Your doctor will explain your treatment options and what to expect.

If your amyloidosis is caused by another health condition, such as rheumatoid arthritis, treating the condition can improve your symptoms.

Other treatments depend on what type of amyloidosis you have and what parts of your body are affected. Treatments may include:

medicines to help with symptoms, such as painkillers, anti-sickness medicines, or medicines that reduce swelling (diuretics)
medicines to reduce the amount of amyloid your body produces
kidney dialysis, if your kidneys are not working properly
a kidney transplant or liver transplant, if these organs are damaged

Treatments for AL amyloidosis

If you have AL amyloidosis, caused by a problem with your bone marrow, you may be offered:

chemotherapy to destroy the blood cells in your bone marrow that cause the condition
a stem cell or bone marrow transplant

Recording information about you and your condition

This helps scientists look for better ways to prevent and treat this condition. You can opt out of the register at any time.

Amyloidosis