Help and support Helpline Information and leaflets Amyloidosis If you would like to discuss your kidney diagnosis with our trained members of staff ring the free to call number 0800 169 0936. The NKF Helpline is available Monday to Thursday 08:30am - 5:00pm Friday 9.00am – 1.00pm on 0800 169 09 36 or email [email protected]. WHAT IS AMYLOID? Amyloid consists of clumps of misfolded protein strands and can be seen under the microscope. Amyloid itself is not harmful, but sometimes it is laid down within body tissues where it can interfere with normal function. WHAT DOES IT DO TO THE KIDNEYS? When doctors look at a kidney biopsy (a small piece of kidney removed with a needle) under the microscope, amyloid can be seen in blood vessels and in the filtering elements of the kidney. Damage to the filtering elements is the most important problem, and can cause protein loss in the urine with fluid retention in the body, or in some cases it can cause kidney failure. PROTEIN LOSS WITH FLUID RETENTION The obvious sign of this is ankle swelling. In some severe cases the swelling may affect the legs up to the thighs, with fluid around the hands and face. Fluid can collect internally, causing abdominal swelling or breathlessness. KIDNEY FAILURE This is normally detected by blood tests which measure chemicals the kidney should be eliminating from the body. Other symptoms of kidney failure can include itching or tiredness and sickness. HOW CAN IT AFFECT THE BODY? This varies from case to case, so that no two people with amyloid have exactly the same problems. Amyloid can affect many parts of the body, and here is a list of some of the problems. There may be none of these problems, and it is very unlikely that all of them could develop. SKIN Amyloid can affect small blood vessels inside the skin. This makes the blood vessels fragile, and bruising may occur very easily, particularly on the forearms or around the eyes. BOWEL It is quite common for parts of the bowel to be affected by amyloid. This can cause a tendency to diarrhoea or constipation, or in some cases difficulty swallowing or sickness. BONES AND JOINTS Amyloid can cause swelling around joints, although this is not usually a major problem. There can be compression of one of the nerves to the hand around the wrist, and if there is numbness or tingling in the thumb or palm of the hand you should tell your doctor, as this can usually be dealt with by simple surgery. NERVES Occasionally amyloid can upset nerves as they run down the body to the feet. This can cause pains or numbness in the feet. HEART AND LIVER These organs can have amyloid deposited inside them. It is normal for doctors to measure liver function by blood tests and perform an electrocardiograph (heart tracing). WHAT CAUSES AMYLOID? Several types of protein can cause amyloid. By far the commonest are fragments of antibodies. This occurs if the bone marrow overproduces a single antibody molecule by mistake. This overproduction by the bone marrow is very common as we get older, and fortunately only causes amyloid in a very few cases. If amyloid is caused by antibodies, doctors will discuss the case with blood specialists, who may perform a bone marrow test. In most cases amyloid is caused by a benign growth of the bone marrow, but sometimes there is a more serious condition called myeloma. Rarely, amyloid is caused by chronic severe inflammation in the body, such as some types of arthritis. Very rarely, amyloid runs in families, but the amyloid protein is not an antibody in these cases. Patients who have been on dialysis over many years can develop dialysis-related amyloidosis, which mainly affects your bones, muscles and tendons. WHAT TREATMENT IS AVAILABLE? There have been many advances in recent years and there are more treatments offered. These do not cure amyloid but can control the disease. The treatments are a type of chemotherapy and work by reducing the amount of protein made. They are often monitored through specialist scans and you may be referred to the National Amyloid Centre which is based at the Royal Free Hospital. Other treatments can help with some of the symptoms which are caused by amyloid. This may include treatment for retention of fluid, dietary advice, and treatments to prevent blood clots. The risk of dialysis- related amyloidosis is reduced by patients and health professionals working together to ensure you receive good quality dialysis over a sufficient time period. HOW WILL AMYLOID AFFECT MY LIFE? This varies from case to case, depending on how amyloid has affected the body. Some amyloid patients lead essentially normal lives, others have to accept some limitations due to weakness or breathlessness. Everyone should be as active as possible and aim to lead as normal a life as possible. Last reviewed June 2023Next review June 2026 Reviewed by Dr Oshini Shivakumar 'Specialist Renal Registrar' Download this Information in PDF The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.