This page is intended as a brief introduction to lupus. Further information and help may be obtained from the organisations listed at the end of this document.
Lupus is an autoimmune disease. This is where the body’s own immune system, rather than producing antibodies (immunoglobulins) to attack invading bacteria and viruses, becomes confused and produces antibodies that attack the body’s own cells. In the case of lupus, it is the arteries and connective tissues e.g. skin, joints, kidneys, lungs, heart and gastrointestinal tract that are affected. The disease is unpredictable, it comes and goes unexpectedly.
Lupus is not a rare disorder. Although it can affect anybody of any age, it mostly affects women of child bearing age (15-50). There does appear to be a genetic predisposition to lupus. If you have family with lupus there is more of a chance of developing lupus yourself. Among children, lupus occurs three times more commonly in females than in males and in adults the ratio of women to men is even higher. The people most at risk of from this disease are those of Afro-Caribbean origin, particularly women. It is also more commonly seen in people of Asian origin.
Most people with lupus present with skin or joint problems but symptoms can vary enormously because of the different organs that can be affected. This means that it is difficult to diagnose and can be confused with other disorders such as rheumatoid arthritis, multiple sclerosis and ME.
Rashes, alopecia (hair loss), fatigue, weakness, aching and painful joints particularly of the fingers, hands wrists and knees or arthritis are commonly seen. Patients may present with a fever and single organ involvement such as glomerulonephritis where the microscopic filters, the glomeruli are affected leading to kidney failure or, more rarely, with multi-organ involvement.
The symptoms are caused by inflammation, the body’s reaction to damaged tissue. Inflammation can cause visible swelling, redness, warmth and pain. Tissues can be left scarred and permanently damaged.
There is no cure available yet for lupus. Medical treatment is aimed at controlling the specific problems that a person with the disorder has. Inflammation is treated with non-steroidal anti-inflammatory drugs in milder disease, anti-malarial medicines are used for mild to moderate disease and steroids and, if necessary, cytotoxic drugs are employed in serious cases. All these medications can have powerful side-effects and people taking them need to understand them and have regular follow ups in outpatients or with their GP.
In addition to drugs, it is important that people with lupus get plenty of rest and sleep and take it easy when they have a flare up of the disease. This can mean major changes to a person’s lifestyle affecting those around them. It may need help from partners, family members and employers.
Certain things can provoke an exacerbation of the disease. These factors should be avoided e.g. sun, excessive heat, fatigue and some medications and infections. Any early symptoms of flare up should be reported promptly to the doctor.
The kidneys are affected by lupus in about a third of all people with the condition. For some, the disease may be very mild and come and go. For others, the problems may be worse, with a decline in kidney function that may lead to kidney failure.
Lupus affects the glomeruli, the tiny delicate filter structures of the kidney that are responsible for cleaning the blood of excess water and waste products such as urea and creatinine. They become inflamed and scarred leading to a loss of function. In particular, they allow too much protein from the body to leak out into the urine.
The most common symptom is puffiness in the legs, ankles and/or fingers. This is caused by water retained in the body because of the loss of protein. A patient might notice weight gain also from the extra water retained in the body. There is no pain from the kidneys or when passing water that is caused by the disease. As the disease can be very mild there may be no symptoms at all. In these cases it is usually identified during routine screening of urine when higher than normal amounts of protein are found in the urine.
Urine testing – identifies the presence of protein and blood cells in the urine that have leaked through the damaged filters into the urine. These signs can be caused by other problems, therefore, to determine the cause of the problem, other tests are necessary. A 24 hour urine collection may be needed to measure exactly how much protein is being lost and how much creatinine is being removed by the kidneys. If you know that you have lupus you should have your urine checked regularly for protein and blood by your doctor.
Blood testing – will show how well the kidneys are working by checking the level of waste products in the blood. If the kidneys are not working as well, there will be higher levels of urea and creatinine in the blood. Levels of essential chemicals such as sodium and potassium will also be affected. Protein levels may also be measured. A test can be performed to detect abnormalities in the immune system.
Kidney biopsy – taking a tiny specimen of the kidney itself is the only way of absolutely confirming the diagnosis of lupus nephritis and it may be required. This allows the specimen of kidney to be looked at under a microscope to find out how much damage there is. This information allows the doctor to tailor treatment to the individual needs of the patient.
For those that require help, treatment takes two forms. Firstly controlling the effects of any kidney failure, for example giving drugs to control blood pressure and water tablets to help to remove the excess water. Secondly, to control the inflammation within the kidney. This is usually done with high dose steroids. It is important to be aware that these drugs have side-effects that may be unwelcome and anyone starting treatment needs to know what the effects may be.
For some people, the steroids are not effective. These patients are offered drugs to suppress the bodies immune system, to stop further damage to the kidneys. Again, these medicines are very powerful and can have serious side-effects. Anyone starting treatment needs to know what these effects may be.
There is no cure for lupus or lupus nephritis at the present. The aim of treatment is to control the disease. Unfortunately, some patients may develop end stage renal failure and require renal replacement therapy in the form of haemodialysis or peritoneal dialysis. Patients with lupus who have end stage renal disease may also opt for kidney transplantation. This has been done successfully. However, because the disease can recur, it is important to have the disease well controlled before a patient can be placed onto the transplant waiting list for a suitably matched kidney.
People with lupus are fortunate to have a very active patient association called Lupus UK. Lupus UK has a network of regional support groups across the UK. It provides welfare support for people with lupus, information (books, videos, fact sheets), advice and counselling for people with lupus. It works to educate and inform health care workers about lupus. It raises awareness in the general public through its annual Lupus Awareness Week each April. It raises funds for research, publishes a quarterly magazine for members and produces posters and other publicity materials. You can contact them at their head office:
St James House, Romford, Essex RM1 3NH
Tel: 01708 731251, Fax: 01708 731252
or the local group:
South Wales Lupus Group
Ella P. Hetherington, Group Secretary, 7 Clos-yr-Wenallt, Rhiwbina, Cardiff CF4 6TW
Tel: 01222 624511