Raising awareness of AL amyloidosis: A diagnostic pathway

At Myeloma UK, we are committed to supporting people living with myeloma and its related conditions – including AL amyloidosis. In the UK, around 500–600 people are diagnosed with AL amyloidosis each year. Together with Myeloma Patients Europe (MPE), we are marking World Amyloidosis Day 2025 by raising awareness of amyloidosis and sharing a tool to support doctors in diagnosing amyloidosis earlier.

Help us by sharing the pathway with other colleagues: together we can improve awareness of amyloidosis.

Types of amyloidosis

 ‘Amyloidosis’ refers to a group of conditions where abnormal proteins build up in the tissues of the body. This build-up of amyloid protein is called an ‘amyloid deposit’.

There are different types of amyloidosis, named according to the type of amyloid protein that is produced. The three main types are:

• AL amyloidosis (light chain amyloidosis) – the most common type, caused by abnormal plasma cells producing misfolded light chain proteins.
• ATTR amyloidosis – caused by amyloid deposits from abnormal versions of the transthyretin (TTR) protein.
• AA amyloidosis – a very rare form, and a reaction to another illness like Crohn’s disease or rheumatoid arthritis.

AL amyloidosis is the only type caused by plasma cell dysfunction, making it particularly relevant to clinicians working in haematology and myeloma care.

Treatment advances in AL amylodosis

Although AL amyloidosis is currently incurable, there are treatments that can be very effective at controlling the condition, reducing symptoms, improving the quality of life and ultimately extending life.

Last year, DaraCyBorD (a combination of Daratumumab (Darzalex®), cyclophosphamide, bortezomib (Velcade®) and dexamethasone) was the first bespoke treatment approved for AL amyloidosis. Myeloma UK fought a difficult battle with NICE to give access to newly diagnosed patients.

A diagnosis pathway: Enabling timely detection

To support earlier diagnosis of this condition, today, we are sharing a diagnosis pathway designed to help healthcare professionals:

• Recognise the signs and symptoms of amyloidosis.
• Identify appropriate diagnostic tests when a patient presents with symptoms of amyloidosis.
• Refer amyloidosis patients to for further testing.

With the model of amyloidosis patient care evolving in the UK, it is timely to support clinicians to diagnose, treat and care for people living with amyloidosis. Four new regional amyloidosis centres are opening outside London, with two already commissioned in the Midlands and North-West England, giving patients the opportunity to be cared for closer to home.

Explore the tool and join us in raising awareness

Explore the symptoms and the recommended investigations and referrals for suspected AL amyloidosis in MPE’s tool:

Please share the pathway with colleagues and be vigilant of the signs and symptoms of amyloidosis – every day.