Ask the Nurse: AL amyloidosis and treatment

‘Amyloidosis’ describes a set of conditions caused by a buildup of abnormal amyloid proteins in the organs and tissues of the body. The most common type of amyloidosis is AL amyloidosis, which occurs when abnormal proteins produced are light chains.

Around 500–600 new patients are diagnosed with AL amyloidosis in the UK each year. While treatment can be very effective in controlling the condition, there is currently no cure. This means that even after successful treatment and remission, AL amyloidosis will return and require further treatment.

This month, following World Amyloidosis Day on October 26, we answer some of the questions you ask our Myeloma Infoline team about treatment for AL amyloidosis.

If you have not heard of AL amyloidosis before, you may find our introductory blog helpful first.

Can AL amyloidosis be treated?

Although AL amyloidosis is currently incurable, there are treatments that can effectively control it. Your treatment will aim to reduce the number of abnormal plasma cells in the bone marrow, stop the production of abnormal light chains, prevent further tissue and/or organ damage and improve your quality of life. AL amyloidosis can affect almost every organ of the body, apart from the brain. How it affects the body determines the symptoms a patient may experience. It can affect multiple organs at once.

AL amyloidosis is a relapsing-remitting condition which means you can have times when the AL amyloidosis is not active or causing symptoms (remission), but it will become active again after a period of time (relapse). When the condition relapses, treatment can help to bring it back under control.

Your healthcare team will consider several factors such as your age, general health, extent of organ/tissue damage and response to any previous treatments, but usually a combination of different types of drugs are given. Many of the treatment options include drugs typically used to treat myeloma.

What are the treatment options for AL amyloidosis?

In February 2024 the first bespoke treatment for AL amyloidosis was approved. This is called DaraCyBorD, a combination of four drugs:

• Daratumumab (Darzalex®).
• Cyclophosphamide.
• Bortezomib (Velcade®).
• Dexamethasone.

Depending on your general fitness and age, you might be offered high-dose therapy and stem cell transplant (HDT-SCT). You can learn more by downloading our High-dose therapy and stem cell transplantation (AL amyloidosis) Infoguide.

Other possible treatment options may include: 

• Chemotherapy, such as cyclophosphamide or melphalan.
• Steroids, like dexamethasone.
• Proteasome inhibitors, including bortezomib (Velcade®) and carfilzomib (Kyprolis®).
• Immunomodulatory drugs, such as thalidomide or lenalidomide (Revlimid®).
• Monoclonal antibodies, including daratumumab (Darzalex®).

Treatment plans can vary depending on your individual needs, the type of treatment being used and the stage at which the treatment is given.

Most treatments are given in cycles – a set number of days of treatments followed by a rest period. A series of these cycles is called a course or line of treatment. Not all drugs are available at each line of treatment and your healthcare team will guide you through what is available and most appropriate for you.

You can find more information on these treatments in our Treatment Guides.

When should I start treatment for AL amyloidosis?

Treatment usually begins very quickly after AL amyloidosis is diagnosed, to limit or prevent further organ damage, particularly if the condition is progressing quickly or the heart or kidneys are affected.

Sometimes, if organ function is stable and the AL amyloidosis is progressing very slowly, it may be considered appropriate to delay commencing treatment.

If your AL amyloidosis is becoming more active (relapsing) following previous treatment, you will usually be offered prompt treatment. You will normally be offered a different treatment combination to previous treatments, and your healthcare team will discuss what this may look like and the best time to start.

I have myeloma and AL amyloidosis. How does that impact my treatment?

Occasionally, people are diagnosed with myeloma and AL amyloidosis.

Whilst both myeloma and AL amyloidosis are conditions which involve abnormal plasma cells, myeloma is a cancer whilst AL amyloidosis is a non-cancerous condition. Because both conditions involve plasma cells, the treatments can be very similar.

However, if you have myeloma and AL amyloidosis, your treatment plan will be carefully tailored to target both conditions – whilst paying particular attention to protecting organs affected by the AL amyloidosis.

Your healthcare will be overseen by specialists who work together as a team to coordinate effective treatment whilst monitoring your organ function and optimising your supportive care.

What treatment side effects might I experience?

It’s normal to experience some side effects with treatment, though these can vary dependent on the individual and type of drug. Some side effects are short-term and can often be managed with supportive care. Your healthcare team may recommend treatments such as:

• Diuretics to control fluids in the body.
• Antibiotics to fight or prevent infections.
• Anti-emetics to control nausea and vomiting.
• Pain relief to help you stay comfortable.

It’s important to let your healthcare team know if you experience any new or worsening symptoms or side effects. They’re there to support you and can give advice tailored to your specific circumstances.

Sometimes, if side effects become difficult to manage, your treatment may need to be adjusted – this could mean lowering the dose, changing how often you receive it or switching to a different treatment. Your healthcare team will work with you to find the most effective and manageable treatment for you.

Sometimes your healthcare team may refer you to the palliative care team who can help manage symptoms or side effects. Palliative care teams are not solely for end-of-life care and can be involved in a patient’s care right from diagnosis.

There are also things you can do to support your wellbeing during treatment. Maintaining a healthy lifestyle by eating a balanced diet, having a good sleep routine and getting gentle regular exercise can all help. Our Diet and nutrition Infosheet contains helpful tips on how to eat well while living with AL amyloidosis.

How will I know if treatment is working?

Your healthcare team will regularly monitor how you’re responding to treatment using the same types of tests that you had during diagnosis. These may include blood and urine tests, imaging scans and assessments of organ function.

When treatment is working well, you may notice a reduction in symptoms as your affected organ function gradually improves or stabilises, leading to an improvement in your overall quality of life.

If a particular treatment isn’t working as hoped, your healthcare team will explore other options and may adjust your treatment plan. It’s important to remember that treatments work in different ways and you may find one more effective than another.

Treatment challenges and relapse can be an emotional and distressing time, for both you and those close to you. Talking to your healthcare team, family and friends or other patients can really help. Our Information Specialists are also here to support you – get in touch on 0800 980 3332 (UK) available Monday – Friday, 9am–5pm (closed weekends and some public holidays) or use our Ask the Nurse email service.

Are there any clinical trials for new treatments I can consider?

Clinical trials for AL amyloidosis are becoming more common, as researchers continue to explore new treatments and ways to use existing treatments in more effective ways. Clinical trials can allow access to new treatments or treatment combinations which are not yet available on the NHS.

If you’re interested in exploring this option, your healthcare team are the best people to talk to. They can talk through what is available, whether a trial might be suitable for you and help you understand what is involved.

You can also use the Myeloma Trial Finder to search for current clinical trials in the UK for AL amyloidosis.

If you have any further questions or need support, contact us through the Myeloma UK Infoline at 0800 980 3332 (UK) or use our Ask the Nurse email service.