LUPUS AND LUPUS KIDNEY DISEASE

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1 LUPUS AND LUPUS KIDNEY DISEASE

2 Key points about Lupus Lupus is a condition that affects all parts of the body, and 1 in 3 people with Lupus will get some kidney disease. Kidney disease in Lupus is complicated because there are several distinct types of kidney disease that can occur. The commonest symptom of kidney disease in Lupus is water retention, causing swelling of the ankles. Kidney disease in Lupus can be treated with immunosuppressant drugs, but these may have to be taken for many years. Kidney failure caused by Lupus can be treated with dialysis or, in some cases, kidney transplantation. What is Lupus? Lupus, also called Systemic Lupus Erythematosus (or SLE), is a disease that can affect all parts of the body. The skin, joints and kidneys are commonly affected and it may develop very slowly and be present for many years. Lupus is commonest in young women, but men and older people can get it as well. It is also more common in Asian, Hispanic or Black people than in white people. There is medical treatment that may help control Lupus, but there is no cure. Why is it called Lupus? Lupus is the Latin name for wolf and was used for this condition because, before the days of drug treatments, the skin disease could eat away at the face and leave extensive damage, as if it had been attacked by a wolf. The full name is systemic Lupus erythematosus (SLE). Systemic means it can affect all parts of the body and erythematosus means the skin can have a red colour around the rash. Drug treatments mean that the rash which gave Lupus its name is not seen nowadays, or can be controlled in its early stages. Not everyone with Lupus gets a skin rash, but the name has stuck! What causes Lupus? The cause of Lupus is not fully understood. Lupus is caused by the body s immune (natural defence) system. The job of the immune system is to defend the body against invaders, but sometimes the immune system can go wrong and damage normal tissues in the body. A particular type of antibody, called anti-dsdna antibody, is nearly always found in Lupus, and can be measured in the laboratory from a blood test. There is a type of Lupus where blood clots and miscarriages can occur, called confusingly by several names (antiphospholipid syndrome, Hughes syndrome, and Lupus with anti-cardiolipin antibodies). Lupus can very occasionally occur as a side effect of some drugs, but these people with drug induced Lupus do not seem to get Lupus kidney disease. 1

3 More details about the immune system... The usual job of the immune system is to fight invaders into the body. These might be germs or bugs, or foreign objects such as splinters. The body recognises these invaders and tries to eliminate them from the body. The blood contains two main types of defence system. One is white blood cells, which stick to germs and kill them. The other type of defence is antibodies, which are smaller than the white blood cells. They work by sticking onto germs and either make them burst apart, or help the white blood cells to stick to them. The immune system is very powerful and is normally very good at recognising what is part of the body and what is not. However, sometimes it makes a mistake and attacks the body as if that part of the body was an invader. There are many different diseases caused by the immune system, and they can affect any part of the body. There are several kidney diseases caused by the immune system. Some of them affect only the kidneys, some can affect other parts of the body as well as the kidneys. It is not clear why the immune system causes diseases such as Lupus. There may be some trigger that makes the immune system go wrong, such as an infection. It is not known why Lupus occurs, except in the extremely rare cases where Lupus is a side effect of a drug. Lupus can occasionally occur in more than one family member, and is more common in people who are black, Hispanic or Asian than in Europeans. There is no scientific explanation for this at the present time. More details on the antibodies that cause Lupus... Antibodies are not all the same. Our blood contains millions of different antibodies, each one directed against only one type of chemical invader. Blood tests can measure several different types of antibody in Lupus patients which are not normally present in the body. These antibodies can attack the normal tissues of the body, instead of invaders. The most important are antibodies against double stranded DNA (called anti-dsdna antibodies for short), and an antibody called anti-cardiolipin. Anti-ds DNA antibodies (anti-double stranded DNA). These are the most important antibodies in Lupus. DNA is the chemical inside our cells that is the code for life. Antibodies against the centre, or nucleus of the cells in our body, are very common and usually do not cause problems, but antibodies against double stranded DNA (called anti-dsdna) do seem to be important if they are present. Nearly everyone with Lupus has anti-dsdna antibodies, so it is an important test. Also, the amount of the antibody in the blood can be measured, and is useful in many people as a measurement of disease activity. The anti-dsdna antibody level can therefore help to calculate the correct amount of drug treatment someone with Lupus should receive. 2

4 Anti-cardiolipin antibodies (also called anti-phospholipid antibodies). These are important in Lupus because someone with this antibody is at risk of blood clots and women are at risk of miscarriage if they get pregnant. Not everyone with these antibodies will run into trouble, but if someone with Lupus wants to have a baby or has a history of blood clots, this test should be performed. If these antibodies are present, they do not usually go away with treatment, so that some people may need long term treatment to prevent blood clots. This usually means drug treatment to make the blood clot less well (anticoagulation). Warfarin tablets are most commonly used, but because warfarin can harm a baby, heparin injections are used during pregnancy. Milder cases may be able to take aspirin to reduce the chances of blood clots. Anti-nuclear antibodies. The nucleus is the central part of each cell in our body, and antibodies against the nucleus are quite common. Anti-nuclear antibodies do not mean someone has Lupus - it is necessary to go on and do other tests such as anti-dsdna antibodies to confirm a diagnosis of Lupus. Anti-Ro and anti-la antibodies. These may also be present in Lupus. They may help confirm a diagnosis of Lupus if the anti-dsdna antibodies are not present. Also, anti-ro antibodies can cause problems in pregnancy, and should be tested if a woman with Lupus wants to have a baby. Crithidia antibodies. This is a very sensitive test for anti-dsdna antibodies. It is used sometimes to confirm a diagnosis of Lupus in difficult cases, but does not have value in monitoring the effects of treatment. What are the symptoms of Lupus? Lupus has many possible symptoms; each person with Lupus is slightly different from each other one. Many of the symptoms of Lupus occur commonly in people who do not have Lupus. This is one the reasons that Lupus can be so difficult for doctors to diagnose, and why there is often a long delay between the appearance of the first symptoms and a positive diagnosis. Some people only ever have Lupus in one part of the body, in other people problems can develop slowly over years; and occasionally, a severe disease can affect all parts of the body at once. Common Lupus symptoms are tiredness and fatigue; joint pains; skin rashes. The symptoms of Lupus can be:- 3

5 1) Tiredness and fatigue. Lupus patients commonly report unusual tiredness, although of course many other conditions can cause this symptom. There may be some mood changes, perhaps with excitability or depression. 2) Joints. It is common for Lupus to cause pain and swelling in joints. Any joints can be affected, but it is commonest for the hands and feet to be affected. 3) Skin. Lupus can cause several different types of skin rash. The three commonest are:- a flush across the cheeks, called a butterfly rash because it forms a shape a little like the wings of a butterfly across the cheeks (with the nose forming the body of the butterfly). patches of raised and discoloured skin, often on the face or upper body - this is called discoid Lupus, because the rash forms disc shapes on the skin. small red spots on the lower legs, which are tiny little blood blisters. These form because Lupus has caused tiny blood vessels under the skin to burst. This is called a vasculitic rash, because (in medicine) blood vessels are called vascular, and -itis means inflammation 4) Kidneys. About 1 in 3 Lupus patients will get some kidney disease. This is discussed in detail elsewhere in this leaflet. 5) Brain. Lupus can cause brain disease, though fortunately serious brain disease is rare. This can be a blood clot in the brain, causing a stroke with weakness of an arm or leg. In other cases Lupus can cause tiny spots of brain damage throughout the brain, causing behaviour or mood changes. Sometimes Lupus can cause a sudden serious behaviour disturbance which requires urgent treatment. Any of these problems can cause epilepsy. This is a condition where fits occur at intervals. A fit is a collapse or loss of consciousness associated with shaking movements of the arms and legs, sometimes with incontinence of urine. 6) Eyes. Lupus can cause inflammation in the eyes, or sometimes one eye at a time. There may be pain or redness around the eye, or just a reduction in vision in the eye. Lupus disease in the eye is treatable, and it is extremely rare for blindness to occur. 7) Pregnancy. Lupus can cause miscarriage in some women while they are pregnant. In some women it causes recurrent miscarriages. Lupus can affect the baby while it is in the womb, or for a while after birth. Women who are thinking of getting pregnant should talk to their specialist about any risks to the pregnancy in their particular case, and any changes in treatment that might be necessary. 8) Blood clots. Lupus patients, especially those who have an antibody in the blood called anticardiolipin antibody, are prone to blood clots. These can cause pain or swelling in a leg. 4

6 If small parts of blood clots pass up into the lungs, there can be chest pain, breathlessness and coughing up of blood. If blood clots do occur, it is necessary to take drugs to reduce the clotting of the blood (these are called anticoagulants; heparin and warfarin are most commonly used), in some cases for life. 9) Lung and heart. Fluid can collect in body cavities around the lungs or around the heart (called pleural effusion and pericardial effusion respectively). These fluid collections are often small and may not cause any problems, but sometimes need draining with a needle if they are squashing the underlying organ. Lupus can cause someone to cough up blood, and this problem must be reported to doctors immediately. The two main causes of coughing up blood are bleeding into the lungs in a Lupus crisis and blood clots in the lungs. Lastly, Lupus can cause scarring in the lungs and breathlessness on minimal exertion. 10) Anaemia. Lupus can affect the bone marrow, with antibodies attacking blood cells. This can cause low counts of any of the three main types of cell in the blood. These three types are: the red cells which carry oxygen around (a shortage of these red cells is called anaemia); the white cells which fight infection (a shortage is called leucopaenia); the platelets which make the blood clot (a shortage is called thrombocytopaenia). All other parts of the body are occasionally affected in Lupus, though much less commonly. Why does Lupus cause kidney disease, and how many people get it? Lupus damages parts of the body because antibodies travel in the blood stream and get trapped in the tissues of the body, causing local damage (called glomerulonephritis). The kidneys have a large blood supply, and the filters of the kidneys are very delicate, so it is not surprising that the kidneys are affected in some cases. However, it is not possible to predict whether a particular individual with Lupus will get Lupus in the kidneys. About 1 in 3 people with Lupus will get kidney disease at some time in their life. Sometimes kidney disease is the first sign of Lupus, sometimes kidney disease only develops after Lupus has been present for some years. What are the symptoms of Lupus kidney disease? Kidney disease in Lupus is discovered in four main ways:- Someone may feel completely well. Kidney disease is only picked up because tests are performed regularly in Lupus patients to check for kidney disease. Lupus kidney disease can cause water build up in the body, with swollen ankles, or puffy face and hands. This is called nephrotic syndrome. If you require further information, call the Helpline on Kidney failure can cause sickness, tiredness and itching. However, not everyone with these symptoms has kidney failure. Pain passing urine, having to go in a hurry and very frequently, may occur with urine infection. Infections may occur in people who never develop the serious forms of Lupus kidney disease, but of course infections may need urgent treatment with antibiotics. 5

7 Blood and urine tests are performed to detect kidney disease at an early stage in lupus and are repeated at most hospital visits. the most important urine test is for protein. Protein will appear in the urine in nearlty every patient with lupus and kidney disease. If there is a sign of kidney disease, further tests will be performed. These will include X-rays of the kidneys, and if significant kidney disease is suspected, removal of a tiny piece of kidney to look at under the microscope. This is called a kidney biopsy. Types of Lupus kidney disease The most important kidney disease is glomerulonephritis, which is inflammation in the filters of the kidneys. There are several types of glomerulonephritis in Lupus. These have been put into 5 categories by the World Health Organisation, and a specialist can predict the long term outcome of kidney disease by knowing which type of glomerulonephritis someone with Lupus has, and how badly the kidney is affected by that type. In addition to glomerulonephritis, Lupus patients can get kidney infections and a condition associated with anti cardiolipin antibodies (also called anti-phospholipid syndrome). These are the commonest types of kidney disease seen in people with Lupus who have a kidney biopsy:- Type 1. Normal kidney. Some people with Lupus who have some protein in the urine can have a normal looking biopsy, and this is obviously the best finding, with a good long term outlook. Type 2. Mesangial glomerulonephritis. The kidney is not normal under the microscope, but the changes are not severe. Antibodies are found stuck in the filters of the kidney, but there is minimal damage and inflammation. Kidney function is usually normal in Type 2 kidney disease, and the long term outlook is good. However some cases can turn into the more serious Type 4 kidney disease. Type 3. Focal proliferative nephritis. In this type of glomerulonephritis, the membrane in the kidney filter is thickened, and the cells supporting the filters are inflamed and overgrown. However this change affects only part of each kidney filter, and indeed many filters may not be affected at all. This type of kidney disease in Lupus is intermediate in severity. Some people do require treatment with steroids and more powerful immunosuppressants, other people can have more gentle drug treatment. A long period of follow up in clinic is required, as there is a risk of this disease becoming active in the future, when more powerful treatment may be required. Many people with focal proliferative nephritis have good kidney function for many years, but there is a risk of kidney failure. There may be water retention in the body due to nephrotic syndrome. Type 4. Diffuse proliferative nephritis. This is the most serious type of Lupus kidney disease. The membrane in the kidney filters is damaged and thickened, the 6

8 cells supporting the membrane are overgrown, and their may be areas of dead tissue ( necrosis ) or breakage of the membrane causing inflammation around each kidney filter, called crescents. This type of kidney disease requires vigorous treatment, usually with powerful immunosuppressants. Sometimes this kidney disease is seen in a Lupus crisis, when many parts of the body are affected by Lupus. Many people with diffuse proliferative nephritis respond well to treatment and the kidney function improves, but there is a significant risk of developing severe kidney failure, and needing long term dialysis (artificial kidney treatment). Sometimes dialysis is needed during a Lupus crisis, and the kidneys recover. Your specialist can advise in individual cases about the chances of recovering kidney function once dialysis has been started. Type 5. Membranous glomerulonephritis. This is a type of glomerulonephritis which affects the membranes in the kidney filters, but not the cells in the supporting structure of the filter. Membranous disease can cause heavy protein loss in the urine with nephrotic syndrome (water retention). The outlook in membranous is variable, and depends on details of each individual case - what the level of kidney function is, how much irreversible damage there is on the kidney biopsy, for example. Many people with membranous glomerulonephritis have good kidney function for years and do not develop kidney failure. The treatment of membranous glomerulonephritis depends on the details of each individual case. Some people may require powerful drugs, in other cases minimal treatment may be best, concentrating on treatment of the blood pressure and cholesterol. Not everyone with membranous glomerulonephritis has Lupus. Interstitial nephritis. Most cases of kidney disease in Lupus affect the filters of the kidney (glomerulonephritis). However, in some cases, damage is restricted to the interstitium, that is, the supporting tissue and drainage tubes lying in between the filters. (Nephritis is a medical term which means inflammation in the kidney.) Interstitial nephritis in Lupus can be a mild disease, or occasionally cause kidney failure. It can be associated with anti-cardiolipin antibodies. If you have a glomerulonephritis, you may have some interstitial disease as well - it can all be rather confusing! There are several causes of interstitial nephritis apart from Lupus. Infection. People with Lupus can also get infections in the kidneys, especially if they are taking drugs which reduce the activity of the body s immune system (immunosuppressant drugs such as prednisolone, cyclophosphamide or azathioprine. Most infections in the kidneys can be effectively treated with antibiotics. What treatment is needed for Lupus kidney disease? How you can help yourself? Everyone with Lupus can help themselves by keeping generally healthy and following a few simple guidelines. 7

9 Can Immunosuppressant drugs be used? Because Lupus is a disease caused by over-activity of the body s immune system (see earlier in this section for a description), reducing the activity of the immune system can reduce the activity of Lupus. Side effects of immunosuppressant drugs? All the immunosuppressant drugs used in Lupus have side effects, and many people with Lupus hate taking these drugs. There are several reasons why the drugs should be used, and there are no good alternatives - before the days of good drug treatment, many people with both Lupus and kidney disease died prematurely. How long does immunosuppressant drug treatment last? People with Lupus require long term treatment. Lupus cannot be cured. So that even if all the blood tests become normal and you feel well, there is a risk of the disease coming back when treatment is stopped. However drug dosages can usually be reduced in the long term. What other drugs may be used? Many drugs from the chemist can be used in people with Lupus, to relieve simple aches and pains. People with kidney disease often require a range of drugs to reduce the blood pressure or remove the build up of water in the body. Thinning of the bones (osteoporosis) can occur with steroid therapy. The oral contraceptive and hormone replacement treatment may need to be used with caution in women who have Lupus. More detail on self help and the treatment of Lupus kidney disease How can you help yourself? Eat a healthy diet and keep as active as possible. Stop smoking if you possibly can. Smoking with Lupus increases the risks of heart disease and stroke. Watch the weight. Of course this is easier said than done, but if steroids are being given, watching what is eaten may control the weight. If someone has been very ill with Lupus, it might also be necessary to eat more. Kidney units have dieticians who can offer expert advice - use that advice! Control the amount of fluid taken in every day. Some people with Lupus who get water retention need to reduce their fluid intake; others with urine infections or who are taking the drug cyclophosphamide may need to increase fluid intake. Every person with Lupus needs to check their fluid allowance with their doctor. Salt in the diet can make blood pressure and water retention worse, so try to avoid adding salt to any food or cooking. Some cases of Lupus get worse after sun exposure, look cool in a large hat and use sunscreen; do not get sunburnt. Take the tablets regularly. If they are giving side effects, tell the specialist - don t just leave off the medication. 8

10 Can Immunosuppressant drugs be used? Because Lupus is a disease caused by overactivity of the body s immune system, reducing the activity of the immune system can reduce the activity of Lupus. The problem is that there are no drugs which attack only the part of the immune system causing Lupus. The drugs reduce the whole activity of the immune system, so its good side is damaged. This means that all the treatments can reduce the body s resistance to infection. In the long term, cyclophosphamide or azathioprine also increase the risk of developing some types of cancer. Several types of drug are used in Lupus if the kidneys are not affected, and are not listed here. There are three immunosuppressants drugs used commonly in Lupus when there is kidney disease. These are:- steroids (prednisolone) cyclophosphamide azathioprine mycophenolate Side effects of immunosuppressant drugs? All the immunosuppressant drugs used in Lupus have side effects, and people with Lupus hate taking these drugs. Why are the drugs prescribed, and why will the doctors and nurses keep nagging people about taking them? There are several reasons:- Research has shown that only these powerful drugs are effective for kidney disease in Lupus. The side effects of finishing up on permanent dialysis treatment are greater than the side effects of immunosuppressant drugs. Before the immunosuppressant drugs were available, most people with Lupus and kidney disease died rapidly. Doctors hate prescribing drugs with side effects, and would use gentler treatment if it worked. If the drugs give side effects, there is a great temptation to skip some of the doses, or cut down on one of the drugs. Do not do this without telling your doctor. There are several reasons to be honest:- If the doctors know a drug is giving a side effect, there may be a safe alternative drug dosage or type. If drugs have to be reduced because of side effects, the doctor can advise a monitoring regimen to detect any increase in Lupus activity at an early stage. If the doctor doesn t know what drugs you are really taking, he or she can never advise the best treatment for you. Doctors are not completely daft, and know that many patients are not taking their drugs as prescribed. This makes doctors much more cautious about how the drugs are used. If a doctor knows the truth about which drugs are actually taken, the overall standard of treatment will be higher.

11 How long does immunosuppressant drug treatment last? People with Lupus require long term treatment. Lupus cannot be cured. However, sometimes Lupus seems to go away and some or all of the drugs can be stopped. How can doctors tell if Lupus has gone away? Often the person with Lupus knows themselves, but this is not always enough to guarantee that the disease will not return. Therefore doctors do a number of blood tests to try and measure disease activity. Several tests are performed, and none of them give a perfect picture of disease activity. Therefore, in each parson, the tests that give the best idea of disease activity have to be identified. These tests might include:- Anti-dsDNA antibody levels. The laboratory measures the exact level of this antibody, and it is usually the best measure of disease activity. Complement levels. Complement is a chemical used up when antibodies in Lupus are causing tissue damage, and low levels are a good sign of active disease in some people. Protein levels in the urine. When Lupus causes protein loss through the kidneys, the exact level of this protein leakage can give an idea of disease activity. Creatinine level. Creatinine is a chemical which is used to measure the level of kidney function. If the kidneys are damaged and getting worse, the creatinine level goes up. This might mean that Lupus is active and treatment should not be stopped (although in some cases it turns out that the kidney damage is so bad that there is no point in giving extra treatment for a rising creatinine). Even if all the blood tests become normal and someone feels completely well, there is a risk of the disease coming back when treatment is stopped. If kidney disease comes back after treatment is stopped, it can cause irreversible damage to the kidneys, even if high doses of immunosuppressant drugs are given straight away. Therefore doctors are cautious, and usually recommend at least two years treatment for Lupus kidney disease. For someone who has had a Lupus crisis which was life threatening, it may be safest to stay on a small dose of drugs for life. Because each Lupus case is different, it is not possible to give individual guidance here, you must ask your doctor. What other drugs may be used? Many drugs from the chemist can be used in people with Lupus, to relieve simple aches and pains. People with kidney disease often require a range of drugs, to reduce the blood pressure or to remove the build up of water in the body. Extra medication may be needed to reduce side effects of drugs. Thinning of the bones (osteoporosis) can occur with steroid therapy. The oral contraceptive and hormone replacement treatment may need to be used with caution in women who have Lupus.

12 1) Blood pressure High blood pressure is common in anyone with kidney disease. High blood pressure means that the blood is stretching the walls of blood vessels in the body too much, and can cause long term damage to the kidneys, and risk strokes. High blood pressure can be controlled by losing weight, reducing the amount of salt in the food, and by taking medication regularly. 2) Water retention Kidney disease in Lupus often causes water retention in the body, with swollen ankles. This can be treated with reducing the amount of fluid taken in each day, reducing the amount of salt in the diet, and by taking drugs which force extra water out of the kidneys (these are also called diuretic tablets). The main types of blood pressure tablets are called frusemide and bumetanide. Some people with Lupus do not get water retention, and may be advised to drink extra fluid. Extra fluid may reduce the chances of water infection and reduce the chances of bladder irritation for someone taking the drug cyclophosphamide. Every person with Lupus needs to check their fluid allowance with their doctor. 3) Reduce side effects of other drugs Some tablets are given to reduce the side effects of others. One of the commonest types would be medication to reduce acid production in the stomach, protecting the stomach against ulcers or irritation caused by steroids. 4) Osteoporosis If someone is taking long term steroid drugs, there is a risk of osteoporosis (thinning of the bones). This can be prevented by exercising and stopping smoking. For people with osteoporosis, drugs may be prescribed to help strengthen the bones. 5) Oral contraceptive and hormone replacement treatment There is a small risk that Lupus will flare up if oestrogen (female sex hormone) containing drugs are given. If someone with Lupus wants to take drugs of this type, the up to date information on the risks should be discussed with a specialist first. Can Lupus cause death or kidney failure? Lupus can be a serious disease in some people, but more often it continues for many years, causing problems without causing death. In 100 people with Lupus:- 70 people will not get kidney disease 20 people will get troublesome but not serious kidney disease 8 people will get kidney failure, some will need dialysis 2 people will get severe kidney failure and a Lupus crisis (see next section)

13 What is a Lupus Crisis? This is a term used for a severe flare of Lupus. Lupus usually has periods of time when it is not active, and then can become active, causing perhaps a skin rash and increase in protein levels in the urine. This would be called a Lupus flare. Most flares are mild, and can be treated with drugs through the outpatients clinic. Occasionally, perhaps about 1 in 100 Lupus flares, the disease is so severe it could be called a Lupus crisis. In a Lupus crisis, there is a rapid onset of severe disease in many parts of the body. There is kidney failure; disease in the lungs with breathlessness; fluid around the heart; inflammation and swelling in the brain, often causing fits. Although cases of Lupus crisis are rare, many require treatment on an intensive care unit, and about 1 in 3 people with Lupus crisis will die. Recovery from a Lupus crisis occurs in the majority of cases, but some people are left with some long term problems. Are dialysis and transplantation possible for a Lupus patient? If someone with Lupus gets kidney failure, this may be so severe that there is a life threatening build up of waste products or of water in the body. This is fatal unless artificial kidney treatment (called dialysis) is given. People with Lupus can receive dialysis in the same way as anyone else. If kidney failure becomes so severe that dialysis treatment is required, a Lupus patient may also be suitable for a kidney transplant, depending on tests for suitability. Dialysis and factors that make it successful The success of dialysis depends on three main factors:- The determination of the person receiving the dialysis to overcome problems and to make dialysis a success. How much lupus has damaged other parts of the body such as the lungs or joints (the kidneys don t matter much once dialysis is started!). Technical complications of dialysis. These include infections, which can be commoner in lupus patients who have received high doses of immunosuppressant drugs in the past. The good thing about kidney failure is that, in most cases, it seems to reduce the activity of lupus. Many people can have their steroids and other immunosuppressants stopped after starting dialysis, though others need to stay on low doses of these drugs. If kidney failure becomes so severe that dialysis treatment is required, a lupus patient may also be suitable for a kidney transplant, depending on tests for suitability.

14 Suitability for transplantation So long as someone with lupus has negative blood tests for the lupus antibodies (dsdna), transplantation can proceed in the same way as for other people with kidney failure. Testing for heart disease is still important, so not everyone with negative anti-dsdna antibodies is fit for a transplant. Someone with lupus can receive a kidney from a relative in the same way as for other people. The success of kidney transplantation in people with lupus are about the same as for other types of kidney disease. Lupus can occasionally come back in the transplant. This is usually mild kidney disease but sometimes can cause failure of the transplant. The drugs given to stop the body rejecting a kidney transplant are called immunosuppressants and will also have an effect on lupus, reducing the chance of recurrent lupus. Lifestyle and pregnancy Many people with Lupus lead a normal life, however, others have to live a restricted life according to their symptoms. People with Lupus can do most of the activities they want, but sun exposure can trigger a Lupus attack in many people, so look cool in a large hat and use sunscreen. Pregnancy is often successful in women with Lupus, but there can be problems if a woman has particular types of Lupus antibodies in her blood. Pregnancy and lupus patients Any woman with lupus and kidney disease who wants to get pregnant should discuss her case in detail with her specialist first. The idea that doctors will forbid a woman from getting pregnant is not the case in the 21st century, but a number of risks should be discussed first. The main risks are:- Problems caused by particular types of antibody in the blood. If someone has anti-cardiolipin antibodies or Ro antibodies, there can be either miscarriage or problems with the baby s heart before birth. Women with anti-cardiolipin antibodies may need to have injections of a drug called heparin to anticoagulate the blood during pregnancy. Lupus disease activity is generally reduced during pregnancy, but can increase after the baby is born. Infections, particularly in the urine, can be more of a problem during pregnancy. Drugs used for immunosuppression or treatment of other problems such as high blood pressure can cause problems to the baby. One of the important reasons for discussing pregnancy with a kidney specialist is to optimise drug treatments before getting pregnant. One drug often used to treat lupus, called mycophenolate, can cause developmental problems with a baby. It is very important that anyone taking mycophenolate who wants to become pregnant talks to their medical specialist before conception. A baby can have a lupus syndrome for a short while after birth because of lupus antibodies in the mother s blood, but this is normally a mild problem and gets better quickly.

15 Although this all sounds very negative, the author has seen many beautiful babies born to women with lupus, so do not despair, discuss the details of your individual case with your specialist! Some larger hospitals have clinics run by a kidney specialist and an obstetrician working together to provide extra care for pregnant women with kidney disease. Ask your GP or obstetrician about any such service in your area. It may be helpful to attend a clinic before planning pregnancy to get advice about any changes in medication that might be made before becoming pregnant. More information and support Support and advice can be obtained from a local kidney patient association, and from Lupus UK, the national Lupus support group. Telephone Lupus UK on for details of their written information (which covers areas such as skin and joint disease not dealt with here) and information on local support groups and meetings. Other websites which can help with Lupus as it affects the body apart from the kidneys are:- (Hughes syndrome is another name for the type of Lupus where blood clots and miscarriages occur.

16 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 National Kidney Federation (NKF) All rights reserved Last reviewed September 2017