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Amyloidosis

Sounds like 'am-uh-loi-DO-sis'

Key points about amyloidosis

Amyloidosis is a rare condition that occurs when an abnormal protein, called amyloid, builds up in your organs and affects their normal function.
Amyloidosis can occur throughout your body or in one tissue or organ, most often your heart, kidney, gastrointestinal tract (gut), nervous system or skin.
Symptoms are quite varied, and usually affecting more than one system in your body.
Although there is no cure, treatment can help manage symptoms and limit more amyloid protein being produced, therefore limiting further damage to the affected organ.
There is support available for people with this condition and their carers.

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Amyloidosis is the term used for a group of conditions where insoluble proteins (amyloid) collect in one or more body organs and affect how they function. This may happen throughout your body or in one tissue or organ. Organs often affected include your heart, kidney, gastrointestinal tract (gut), nervous system or skin.

Amyloidosis generally affects people who are middle-aged and older, although it can occur in people from their thirties. Amyloidosis occurs more commonly in men.

Other health conditions can increase the risk of amyloidosis. About 10–15% of people with multiple myeloma develop amyloidosis. Long-term kidney dialysis may increase the risk of dialysis-associated amyloidosis.

Video: Amyloidosis; AA, AL, TTRwt (wild type) and TTR hereditary

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There are many different types of amyloidosis, but there are 3 main types.

(New Zealand Amyloidosis Patients Association, 2021)

Primary amyloidosis (AL amyloidosis)

Primary amyloidosis is a disorder of protein metabolism that begins in your bone marrow. It is sometimes associated with multiple myeloma. Primary amyloidosis affects your heart, kidneys, liver, gastrointestinal tract (gut), central nervous system and skin.

Secondary systemic amyloidosis (AA amyloidosis)

Secondary systemic amyloidosis occurs as a complication of many chronic inflammatory diseases such as rheumatoid arthritis, tuberculosis (TB) and osteomyelitis. It usually affects your kidneys, liver and spleen. AA amyloidosis may improve with treatment of the underlying condition.

Familial (hereditary) amyloidosis

Familial amyloidosis is a rare form of amyloidosis that is inherited. It most commonly causes cardiomyopathy (a condition that makes it harder for your heart muscle to pump blood to the rest of your body) and neuropathy (nerve damage) in middle age.

You may not experience symptoms of amyloidosis until the condition is advanced. When you do have symptoms, they depend on the organ or system affected.

They may include:

extreme tiredness (fatigue)
weight loss
easy bruising
breathlessness or shortness of breath
swelling of your ankles and legs
numbness, tingling or pain in your hands or feet, especially pain in your wrist (carpal tunnel syndrome)
skin changes, such as thickening or easy bruising, and purplish patches around your eyes
an enlarged tongue, which sometimes looks rippled around its edge
runny poo (diarrhoea), possibly with blood in the poo, or constipation (hard poo).

If you have the above symptoms see your doctor. Amyloidosis is diagnosed by biopsy, where a tissue sample is taken from the affected organ so it can be examined closely. Specialised testing of the tissue can help work out the type of abnormal protein involved.

There is no cure for amyloidosis. However, treatment can help manage symptoms and limit more amyloid protein being produced, therefore limiting further damage to the affected organ. If the amyloidosis has been triggered by another condition, such as rheumatoid arthritis or TB, treating the underlying condition can help.

Many of the same types of medicines used to treat some forms of cancer are used in AL amyloidosis. These stop the growth of abnormal cells that produce the protein leading to the amyloid forming.