17854 Amyloidosis Aa

Overview

AA amyloidosis is a rare condition where a protein called serum amyloid A builds up in your organs. This protein is normally produced by the liver during long-term inflammation. Over time, these protein deposits can damage organs, especially your kidneys, liver, and spleen.

No, AA amyloidosis is rare. It is estimated to affect about 1 in every 100,000 people in the UK, but exact numbers are unknown.

It mainly affects adults living with a long-term inflammatory disease such as rheumatoid arthritis, Crohn's disease, ulcerative colitis, or chronic infections. It can also affect people with certain inherited conditions, although this is very rare.

Symptoms

Common symptoms

• Feeling very tired (fatigue)
• Swelling in your lower legs, ankles, or feet
• Foamy urine, which can be a sign of protein leaking into the urine
• Unexplained weight loss
• Poor appetite
• A feeling of fullness or pain in the upper left side of your tummy, if the spleen is enlarged

Causes

Main causes

• Long-term inflammation in the body from conditions such as rheumatoid arthritis, juvenile arthritis, inflammatory bowel disease, or chronic infections like tuberculosis.
• Some inherited conditions, such as familial Mediterranean fever, can lead to AA amyloidosis.
• In a small number of cases, the cause is not clear.

Risk factors

• Having a chronic inflammatory condition that is not well controlled
• Being of certain ethnic backgrounds – for example, Mediterranean, Middle Eastern, or Hispanic – due to a higher chance of inherited conditions like familial Mediterranean fever
• Long-term kidney dialysis in some rare situations

When to see a doctor

See a doctor urgently if:

• If you have shortness of breath, chest pain, or a sudden drop in urine output, call your local emergency number immediately.

Book a routine appointment if:

• If you have a chronic inflammatory condition and notice new swelling, foamy urine, or persistent fatigue, make an appointment with your GP.

Diagnosis

Diagnosis is based on your symptoms, medical history, and specific tests. The only way to confirm AA amyloidosis is to take a small tissue sample and examine it under a microscope for amyloid deposits.

Tests that may be done

• Blood tests to check kidney function, liver function, and markers of inflammation such as CRP or ESR.
• Urine tests, including a 24-hour urine collection, to measure protein levels.
• A biopsy – often of abdominal fat under the skin (fat pad biopsy) or of an affected organ like the kidney.
• Imaging tests such as an echocardiogram (an ultrasound of the heart) to check for heart involvement.
• Genetic testing in some cases to look for inherited conditions.

What to expect at your appointment

If your doctor suspects AA amyloidosis, you will be referred to a specialist hospital team. You may need several tests, and the process can take time. Ask your doctor to explain each step – it's your health and you have a right to understand.

Treatment

There is no single cure for AA amyloidosis, but it can be treated. The most important part is to control the underlying inflammation and support any organs that have been affected.

Self-care at home

• Take any prescribed medicines exactly as directed.
• Keep all medical appointments, including blood and urine tests.
• Monitor and report changes in swelling, weight, or urine output.
• Ask your doctor before taking any over-the-counter medicines, as some can affect your kidneys.

Medical treatments

Your specialist team may use medicines to reduce inflammation – these could include steroids or disease-modifying drugs. They may also use treatments that target the amyloid process directly. If your kidneys are affected, you might need medicines to manage blood pressure or diuretics ('water tablets') to reduce swelling. All treatment plans are individual and should be discussed fully with your specialist.

When is surgery considered?

Surgery is not a usual treatment for AA amyloidosis itself. However, if your kidneys have failed completely, you may need dialysis or a kidney transplant. These decisions are made on a case-by-case basis by your specialist team.

Living with this condition

Living with AA amyloidosis means paying attention to your body and working closely with your healthcare team. You may need to pace your activities and rest when tired.

Lifestyle tips

• Try to stay active with light activities like walking or swimming, as your energy allows.
• If you smoke, ask your healthcare team for help to quit.
• Drink alcohol in moderation, if you are able – always check with your doctor first.

Diet and exercise

Eat a balanced diet that supports your overall health. If you have kidney problems, your doctor may suggest limiting salt to manage fluid retention. Always get personalised advice from a dietitian or your doctor before making major dietary changes.

Mental health and emotional wellbeing

It is normal to feel anxious, frustrated, or low after a diagnosis of a rare condition. Your mental wellbeing is just as important as your physical health. Talk to your doctor about counselling or support services. If you ever feel in crisis, please reach out to your local mental health helpline or go to your nearest emergency department.

Prevention

Not everyone can prevent AA amyloidosis, but if you have a chronic inflammatory condition, keeping it well controlled with regular medical care may reduce your risk.

Vaccines

Staying up to date with recommended vaccines can help prevent infections that might trigger inflammation. Ask your doctor or pharmacist which vaccines are right for you.

Screening programmes

If you have a condition that puts you at higher risk, your doctor may recommend regular urine and blood tests to check for early signs of protein in the urine or changes in kidney function.

Complications

If left untreated

• Progressive kidney damage leading to kidney failure
• Heart problems, such as congestive heart failure or abnormal heart rhythms
• Digestive issues, including malabsorption and chronic diarrhoea
• Nerve damage (peripheral neuropathy) causing tingling or numbness in the hands or feet

Long-term outlook

The outlook for AA amyloidosis varies from person to person. With early diagnosis and treatment that controls the underlying inflammation, many people can live well for many years. Even if some organ damage has already occurred, treatments can slow the disease and help you maintain a good quality of life.

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