Changes in weight are common amongst amyloidosis sufferers and have many factors. It is important for people with amyloidosis to see a dietician regarding nutrition. Malnutrition increases the risk of infection and can worsen fatigue.
Weight loss in amyloidosis patients:
Weight loss is common for amyloidosis patients. Some can lose between 10kg and 15kg over a 6 month or 1-year period before diagnosis is made. This weight loss has many factors and is linked to ‘undernourishment’ or malnutrition. What causes this undernourishment varies from patient to patient: loss of taste, difficulty swallowing, feeling weak with a severity comparable to anorexia, aversion to certain foods (meat, etc.) digestive problems, fast bowel movements (diarrhoea) which prevents the body from correctly absorbing nutrients, damaged kidneys leading to a loss of blood proteins (nephrotic syndrome).
Weight gain in amyloidosis patients:
Amyloidosis patients can gain 5 to 10 kilograms. Weight gain in amyloidosis patients is not due to excess fat or muscle. It is as a result of salt and water retention. This results in oedemas in the feet, legs, thighs or stomach (ascites). Oedemas start off white and soft and do not cause any pain. The earliest sign of oedemas is usually difficulty putting on or fastening shoes. They appear gradually and start in the lower parts of the body (the feet, then the ankles, the legs, etc.). They can also change depending on what position the body is in. If the patient is stood up, swelling will mainly show in the feet, whereas if the patient is lying down, it will spread across the whole body.
Oedemas will appear irrespective of whether the amyloidosis affects the heart or kidneys. The two can mix.