AL amyloidosis – Your Essential Guide

This Essential Guide is for patients who have been diagnosed with AL amyloidosis, and their family and friends. It helps to make sense of your diagnosis and understand how AL amyloidosis and its treatment may affect you.  

This Essential Guide covers key questions about AL amyloidosis, such as:  

  • What is AL amyloidosis? 
  • What are the symptoms of AL amyloidosis? 
  • Will I get all the different symptoms? 
  • What tests and investigations might I have? 
  • Where will I go for my diagnosis? 
  • What is the goal of treatment? 
  • What treatments may I have? 
  • How will I know if my treatment has worked? 
  • What happens if I relapse? 
  • How can I cope with the side effects and complications of AL amyloidosis? 
  • How can I live well with AL amyloidosis? 
  • How can I be supported as a carer for an AL amyloidosis patient? 

Key points you can read about in this Essential Guide include:  

  • Amyloidosis is a general term for a group of conditions where an abnormal protein, called amyloid, builds up in the body’s tissues. The amyloid protein folds abnormally, creating ‘amyloid deposits’ 
  • In AL amyloidosis, the amyloid deposits are made of light chains. Light chains are proteins produced by abnormal plasma cells in the bone marrow 
  • AL amyloidosis is a rare condition – about 600 new patients are diagnosed each year in the UK 
  • AL amyloidosis can cause a wide range of symptoms because it can affect different organs in the body 
  • General symptoms include fatigue, weakness, weight loss and loss of appetite 
  • There may also be symptoms and complications caused by amyloid buildup in particular organs and body systems (the skin, kidneys, heart, nerves, digestive system or tongue) 
  • You will have tests and investigations to diagnose AL amyloidosis, to assess how it is affecting you, and to assess your response to treatment  
  • Tests done include blood tests; tissue biopsies; kidney and heart tests; and scans 
  • Guidelines recommend that, if possible, people should attend the National Amyloidosis Centre (NAC) in London for a series of tests before they are diagnosed 
  • Treatment can be very effective in controlling AL amyloidosis, managing symptoms and prolonging life. There are different treatment options depending on your circumstances 
  • Although there are many effective treatments for AL amyloidosis, currently there is no cure. This means that after every successful treatment and period of remission, you will eventually relapse and need treatment again 
  • Side effects of both AL amyloidosis and its treatment can greatly affect patients. You will be given supportive treatments for side effects, and you can read tips to help with side effects in this Essential Guide 
  • A diagnosis of AL amyloidosis can have a considerable emotional impact. This Essential Guide gives information on sources of support, including support provided by Myeloma UK, and advice for carers 

Myeloma UK AL amyloidosis Essential Guide

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