What is amyloidosis?

Amyloidosis is a group of diseases caused by your body making an abnormal protein called amyloid. This protein can build up in your brain, heart, kidneys, liver or joints. Your organs become damaged and cannot work properly. There are many versions of amyloid proteins that cause different types of amyloidosis.

Amyloidosis can be:

• localised — amyloid collects in one part of your body
• systemic — amyloid travels in your blood and builds up in several different organs

Each type of amyloidosis is named according to the type of amyloid protein causing the disease:

• AL amyloidosis is the most common systemic amyloidosis. It can affect your kidneys, heart, nervous system, liver and soft tissues. This used to be called ‘primary systemic amyloidosis’.
• AA amyloidosis (previously known as ‘reactive’ or ‘secondary’ amyloidosis) usually occurs following another illness, such as chronic inflammation and infections. The kidneys and liver are commonly affected.
• ATTR and Afib are the 2 types of inherited amyloidosis. The heart, nervous system and kidneys are affected.

What are the symptoms of amyloidosis?

The most common symptoms of amyloidosis include:

• extreme tiredness
• weight loss
• swelling of feet and legs
• shortness of breath

Symptoms depend on the type of amyloidosis and vary between people.

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What causes amyloidosis?

Amyloidosis can be hereditary, occurring because of a faulty gene. It can also happen without a family history of the condition.

Factors that increase your risk of developing amyloidosis:

• age over 50 years
• blood cancer, especially multiple myeloma
• long-term chronic inflammatory disease
• long-term kidney dialysis
• a family history of amyloidosis

When should I see my doctor?

You should see your doctor if you are experiencing symptoms associated with amyloidosis.

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How is amyloidosis diagnosed?

Your doctor can diagnose you with amyloidosis by doing a biopsy. A tissue sample from your affected organ is sent to a laboratory for testing. The laboratory can identify whether amyloid deposits are present in the sample.

Once diagnosed, your doctor may refer you for more tests to identify the cause of your condition and any damage it has caused. Possible tests include:

• blood and urine tests — to assess your liver and kidney function
• genetic tests
• bone marrow biopsy
• imaging scans such as CT, MRI, bone scans and/or ultrasound
• ECG and echocardiogram — to assess your heart function

Amyloidosis symptoms are similar to many other common conditions, so it can take time to receive a formal diagnosis.

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How is amyloidosis treated?

Treatment depends on the type of amyloidosis and which organ is affected. There is no cure for amyloidosis, but early diagnosis and treatment can help people experience remission and live fulfilling lives.

The best way to treat acquired amyloidosis is to treat the medical condition that caused it.

Depending on the type of amyloidosis and the complications it causes, other treatments may include medicines, such as steroids and chemotherapy, and a bone marrow or liver transplant.

Some people recover well with treatment, while others experience ongoing symptoms.

There is no cure for amyloidosis. Early diagnosis and treatment help people experience remission and live fulfilling lives.

Complications of amyloidosis

Complications of amyloidosis include organ damage and dysfunction caused by the buildup of amyloids. The organs affected will depend on the type and severity of the condition.

Many treatments used for amyloidosis, such as steroid medicines and chemotherapy, also carry a risk of significant side effects.

It’s a good idea to discuss the risks and benefits of treatment with your treating health professional.

Resources and support

• The Leukaemia Foundation offers more information about amyloidosis, including a useful guide for people with amyloidosis and their support people.
• Visit the Australian Amyloidosis Network (AAN) to learn more about their support services for people living with amyloidosis.
• Find an AAN clinic that can help you manage amyloidosis.