Peripheral neuropathy (AL amyloidosis) Infosheet

This Infosheet explains what the peripheral nervous system is, what peripheral neuropathy is, what causes it in AL amyloidosis patients, its symptoms and treatments and tips for self-management.

Peripheral neuropathy is the term used to describe damage to the nerves that make up the peripheral nervous system. In
AL amyloidosis the nerves that are most commonly affected are those of the hands, lower legs and feet.

Common symptoms include:

  • Pain – this can vary in intensity and is often described as ‘sharp’, ‘burning’, or ‘jabbing’
  • ‘Pins and needles’ – you may notice a tingling sensation which can start in your toes or the balls of your feet and travel up your legs. This sensation may also start in your fingers and work its way up your hands and arms
  • Unusual sensations or an increased sensitivity to touch – often even the slightest touch can cause extreme discomfort. This is frequently worse at night time.
  • Altered sensation – such as a feeling of pain or heat when touching something cold
  • Numbness – in the hands and/or feet
  • Muscle cramps, weakness and tremor – which can interfere with your ability to perform everyday tasks
  • Lack of coordination and/ or sense of position – it may sometimes seem that your body is not doing what you
    want it to do. You may also find your sense of where things are in your surroundings can become distorted
  • Loss of dexterity – performing simple tasks that require intricate movements of the fingers and hands, such as doing up buttons, may become more difficult

Symptoms of peripheral neuropathy often start off gradually but can become more problematic over time. They can also be highly individual to each patient. It is important that if you develop any new pain and/or sensations you discuss them
with your doctor or nurse as soon as you notice them. Peripheral neuropathy is often more manageable if diagnosed early.

The key to the management of peripheral neuropathy is to eliminate or reduce the cause, whilst at the same time treating
the symptoms that occur. If the peripheral neuropathy is caused by amyloid deposition in the nerves, then improvement
may occur with treatment for the AL amyloidosis. If amyloid deposition is already affecting your nerves you may be more likely to develop treatment related neuropathy. Your doctor will take this into account in deciding what treatment to recommend. For example, the drug Revlimid® (lenalidomide) is less likely to cause neuropathy than thalidomide, so a Revlimid based drug combination may be recommended.

If peripheral neuropathy is caused by treatment, lowering the dose of the drug thought to be responsible, or discontinuing it for a period of time, may alleviate symptoms. This does not always lead to an immediate reduction in
symptoms but it is possible to see an improvement over a number of weeks or months.

For Velcade-related peripheral neuropathy, changing the route of administration from intravenous infusion (into a vein)
to subcutaneous injection (into the skin) significantly reduces the occurrence and severity of neuropathy. Velcade is now
usually given as a subcutaneous injection.

Sometimes it will be necessary to stop the treatment permanently in order to prevent long-term damage.

An individual approach is necessary to try to control the symptoms of peripheral neuropathy and your doctor will discuss alternative treatment options with you.

Some treatments may also help relieve your symptoms.

There are many things that you can do to make living with peripheral neuropathy a bit easier and the infosheet includes tips for self-management.