The UK charity for Waldenstrom’s macroglobulinaemia – a rare type of blood cancer
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What is amyloidosis?

Amyloidosis

What is it?

Amyloidosis occurs when abnormal proteins don’t develop correctly, or ‘misfold’, and build up in your organs, meaning they can’t work properly. In rare cases, Waldenstrom’s macroglobulinaemia can a cause amyloidosis because the body is making abnormal B-cells. These cells can produce the abnormal proteins that misfold and cause amyloidosis.

What are the symptoms?

Symptoms can vary depending on what organs are affected by the amyloid protein, so you may only be affected by one or two of these.

  • Fatigue and weakness
  • Shortness of breath
  • Swollen tongue
  • Difficulty swallowing
  • Tingling or numbness in legs and feet
  • Sudden weight loss
  • Frothy urine
  • Diarrhoea
  • Changes in skin colour
  • Joint pain

How is it diagnosed?

Amyloidosis is rare. Therefore, you should be under the care of a specialist. In the UK, there is the National Amyloidosis Centre and doctors should refer any patient they suspect of having amyloidosis to the centre for further evaluation. You don’t need a definite diagnosis of amyloidosis to get referred.

Your doctor will take a small biopsy of the part of the body they suspect is affected by the amyloidosis. The biopsy will be studied under a microscope to see any build-up of amyloid proteins.

You may also have other tests, including scans of the organs affected to check how they’re functioning, as well as blood tests.

How can it be treated?

Like many WM related conditions or complications, your doctor will look at treating the root cause – in this case your WM. They’ll discuss different treatment options with you. You can read more about this treatment here.

You may also need different treatments to help your affected organ(s) function properly.

You can read more about amyloidosis on the National Amyloidosis Centre’s patient website.

With a diagnosis of Waldenstrom’s macroglobulinaemia, you may be coming across new and unfamiliar words. Look them up in our WM glossary below.