What symptoms does SLE cause?

For many people with SLE, the disease is a nuisance, but does not prevent them doing all their usual activities. For these people, the most common symptoms are:

Rashes commonly occur on the face or other sun-exposed areas. Joint pains often affect the person’s hands, but may move around from joint to joint, without any apparent explanation!

Other people with SLE can experience different problems, either on their own or combined with the problems listed above. These problems may include:

If a person has severe SLE, the immune system can cause damage to very important tissues, including the kidney or the brain. Some people with these problems can be very unwell but, in most cases, it is possible to treat the SLE, to control the symptoms. In a small minority of patients, SLE can be very difficult to treat and, occasionally, can be life-threatening.

We have listed many of the more common features of SLE, but it is important to realise that, in this condition, inflammation can suddenly occur at almost any site in the body, and without any obvious cause. If you have SLE, therefore, it is important that you consider that any worrying new symptoms may be related to your SLE, and that you raise this question with your doctors.

How is the diagnosis of SLE made?

Since the problems associated with SLE are so variable, and because some of them, such as tiredness or headache, could have many causes, it sometimes takes a long time for the diagnosis of SLE to be made. How do your doctors make this diagnosis?

• Assessing whether your symptoms are typical of SLE
• Assessing whether features such as your rash or joint swelling are typical for SLE
• Testing your urine for blood and protein, which could indicate kidney involvement
• Testing your blood for evidence of a low blood count
• Testing your blood for evidence of abnormal immune system activity
• Considering whether there is an alternative explanation for any of these features e.g. infection

Your doctors will consider all of these factors before making a diagnosis.

What is a “flare” of Lupus?

A “flare” is the term used to describe a sudden increase in symptoms or problems caused by your disease. This often happens without any obvious trigger, although it can sometimes happen after an infection or even after a routine vaccination. Flares often cause the same symptoms, e.g. rash and joint pains. However, they can vary from person to person or in the same person at different times.

How is SLE treated?

Lupus cannot be cured but it can be treated.

The type of treatment depends on the nature of the problem(s) which lupus is causing. For people who have mild problems, such as mild rashes and/or joint pains, a common treatment is hydroxychloroquine. This is an anti-malarial tablet. This is not used because there is any suspicion of malaria but because it has a calming influence on some of the abnormal activity of the immune system in lupus.

If lupus is causing more troublesome problems, treatment with a more potent immunomodulator (drug which alters the behaviour of the immune system) may be used. This may be used instead of hydroxychloroquine, or in addition to it. Examples include azathioprine, mycophenolate mofetil, and methotrexate. All of these treatments can be associated with important side-effects and anyone taking them must have regular blood tests and checks with their nurses/doctors. You can find out more about these treatments under the Drug Information section of this website.

If lupus causes a flare, your doctor will sometimes recommend treatment with (cortico)-steroids. It is important that you understand the benefits and the risks of corticosteroids, since they can be very effective drugs but, if taken for a long time, can causes serious side-effects. They are, however, very useful for controlling the problems related to lupus quickly, while another (slower) form of treatment is started. Ideally, steroids are used as a short-term treatment, which will then be taken over by other medicines with less risk of serious side-effects. Unfortunately, for some people, steroids are required long-term to control the disease. In these situations, your doctor will work to get you on the lowest possible dose of steroid.

Steroids may be given to have an effect all over the body as:

tablets
a single injection into your muscle
a series of infusions into a vein

Alternatively, steroid may be given to have a local effect only as:

an injection into an inflamed site, such as a joint
inhalers e.g for asthma
sprays for severe mouth ulcers
eyedrops
cream or ointment

The local use of steroid carries a much lower risk of side-effects than the use of steroid throughout the body.

If lupus is causing serious problems (e.g. inflammation in the kidney or brain), or it is just very difficult to control with the medicines mentioned above, then other treatments may be used. These include the powerful immunosuppressive drug, cyclophosphamide or new so-called “biological” drugs, such as rituximab.

You can read more about all these medicines under the Drug Information section of the website.

Does lupus mean I am more likely to get other diseases?

Having one autoimmune disease means that you have an increased chance of having another autoimmune disease. For example;

Approximately 1 in 8 people with lupus have Sjøgren’s Syndrome
Approximately 1 in 10 people with lupus have antiphospholipid syndrome
Approximately 1 in 10 people with lupus have an underactive thyroid

What About Pregnancy and Lupus?

Most people with SLE, who wish to start a family, are successful!

However, there are some problems related to the lupus or the antiphospholipid syndrome which may accompany the lupus. The problems which can occur include:

Drug Toxicity

This problem applies to both women and men with lupus, if they are planning to start a family.
The drugs which are used to treat lupus can affect sperm counts and quality and can also harm the developing baby. This applies particularly to cyclophosphamide, mycophenolate mofetil, methotrexate and sulphasalazine.

Miscarriage

It is important to realise that this is common in the general population, affecting approximately 1in 4 of all pregnancies. However, there is a slightly increased risk with lupus and, particularly, with the antiphospholipid syndrome.
There is some evidence that this risk may be reduced by aspirin and, sometimes by the use of drugs which “thin” the blood (anticoagulants).

Pre-eclampsia

This is recognised by an increase in your blood pressure and presence of protein in you urine. Again this can occur in non-lupus pregnancies but is more common in women with lupus.

Growth retardation

Sometimes your baby grows more slowly than the average

Premature delivery

Sometimes your labour may start earlier than the usual 40 weeks

Congenital Heart Block

If you have a certain kind of antibody in your blood (called anti-Ro antibody), your baby has approximately a 1 in 50 chance of having Congenital Heart Block (CHB), which results in a slow heart rhythm. This may need treatment before or after birth.

Flares

While your lupus may remain quiet throughout your pregnancy, sometimes it can flare. The drugs which will be used to control active lupus in pregnancy may be different from those used when you are not pregnant, since it is important not to harm the baby.

Although it is important to emphasise that most couples, where one partner has lupus, are successful in starting a family, the increased risk of the problems above means that it is important to PLAN your pregnancy! Discuss your plans with your doctors and make sure that you have stopped the medicines which may be harmful long enough for them not to damage your baby.

It may also be necessary to have your antenatal care in a centre which is experienced in looking after patients with lupus or antiphospholipid syndrome. At Addenbrooke’s, we run a combined Connective Tissue Disease/Obstetric Clinic so that you can be seen by a Rheumatologist and an Obstetrician together. In our experience, many patients with lupus have a trouble-free pregnancy and many others just need a little extra “TLC”.

For more information refer to the ARC Booklets on Pregnancy and Arthritis and Antiphospholipid Syndrome.

Will I pass on SLE to my children?

Lupus is not hereditary in the way that eye or hair colour are. Both genetic susceptibility and environmental triggers are thought to be important in the development of lupus. There appear to be many genes which can predispose an individual to developing an autoimmune disease, such as lupus. These genes are not necessarily “bad” genes – they may be protective against other kinds of diseases. However, your children will inherit half of your genes and they may therefore inherit some or all of the genes which predispose you to lupus. Since environmental triggers are also believed to be important, your children probably will not develop lupus, even if they have inherited all of the genes which make you susceptible. However, children of people with autoimmune disease generally have a slightly increased risk of developing some form of autoimmune disease. In lupus, this risk is about 1 in 100.

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