There is currently no cure for systemic lupus erythematosus (SLE), but treatments that can ease the symptoms and make it easier to live with are available.
In most cases, treatment will involve a combination of self-care measures and medication.
Protecting yourself from the sun
Exposure to sunlight can sometimes make symptoms such as rashes worse, and it's important to protect your skin when in the sun.
This means wearing clothing that covers your skin, a wide-brimmed hat and sunglasses. You will also need to apply sunscreen with a high SPF to prevent sunburn. However, some people with lupus are not sun-sensitive and do not need to take extra precautions.
As people get most of their vitamin D as a result of direct sunlight on the skin, there is a risk you may not get enough of this vitamin if you need to avoid sun exposure. This means you may need to make an extra effort to include good sources of vitamin D in your diet to avoid problems such as osteoporosis (weakened bones), and you may be advised to take vitamin D supplements.
Non-steroidal anti-inflammatory drugs (NSAIDs)
Non-steroidal anti-inflammatory drugs (NSAIDs) are a common painkilling medication that reduces inflammation in the body. If you experience joint or muscle pain as a result of SLE, you may be prescribed a NSAID to help ease your symptoms.
Commonly prescribed NSAIDs for SLE include ibuprofen, naproxen and diclofenac.
You can buy some NSAIDs, such as ibuprofen, over the counter. These NSAIDs may be suitable if your joint or muscle pain is mild. For more severe pain, you will need stronger medication prescribed by your GP.
NSAIDs may not be suitable for people who have stomach, kidney or liver problems, or have had these problems in the past. They may also be unsuitable for people with asthma. Your GP will advise about which NSAID is right for you.
If taken in high doses or over long periods of time, NSAIDs can damage your stomach lining, which may cause internal bleeding.
If you need to take NSAIDs on a long-term basis, your GP will carefully monitor you to check for any problems, and you may be prescribed an additional medication called a proton pump inhibitor (PPI) to protect your stomach.
Hydroxychloroquine is a medicine that has been used to treat malaria, but is also effective in treating some of the symptoms of SLE, such as rashes, joint and muscle pain, and fatigue.
You will usually have to take hydroxychloroquine for 6 to 12 weeks before you notice any benefit.
Most expert doctors recommend people with SLE take hydroxychloroquine on a long-term basis as a way of controlling their symptoms, helping to prevent flare-ups and to prevent development of more serious problems from lupus.
Side effects of hydroxychloroquine are uncommon, but may include indigestion, diarrhoea, headaches and rashes.
Hydroxychloroquine may also cause more serious side effects in a small number of people. For example, in rare cases, this medicine can cause eye damage. Contact your GP or specialist immediately if you experience vision problems while taking hydroxychloroquine.
If your GP or specialist feels it is necessary, you may need regular eye examinations.
Corticosteroids are a type of medicine that help reduce inflammation quickly. They can be very effective in treating symptoms of SLE, but are usually only prescribed if the condition is severe.
If you have severe symptoms of SLE, or if you are experiencing a flare-up, you may be given a large dose of corticosteroids to help bring your symptoms under control. As your symptoms ease, your dosage can gradually be reduced.
When prescribing corticosteroids, the lowest effective dosage is always given. This is because high doses or long-term use of corticosteroids can cause side effects. These may include:
Corticosteroids are a safe and effective form of treatment, provided they are taken correctly and under the supervision of your GP or specialist. They will tailor the steroid dose to your disease activity, to minimise side effects while effectively controlling the condition.
Immunosuppressants are a type of medicine that suppress your immune system. They can help improve your symptoms of SLE by limiting the damage your immune system causes when it attacks healthy parts of your body.
Commonly prescribed immunosuppressant medicines include azathioprine, methotrexate, mycophenolate mofetil and cyclophosphamide.
Immunosuppressants are sometimes used in conjunction with corticosteroids (see above) because these medicines may ease your symptoms more effectively when used together. Alternatively, the use of immunosuppressant medication may allow your corticosteroid dose to be reduced.
Immunosuppressant medication is usually only prescribed if you have severe SLE. This is because this type of medication is powerful and can cause side effects such as:
- loss of appetite
- swollen gums
- bruising or bleeding more easily
- extra hair growth
- weight gain
- liver damage
- an increased risk of infection (see below)
Methotrexate, mycophenolate mofetil and cyclophosphamide can also cause birth defects if they are taken during pregnancy, so you should use a reliable form of contraception if you are taking these medications and are sexually active. If you are trying to become pregnant, an alternative medication such as azathioprine can be used.
Tell your GP if a side effect becomes particularly troublesome, as it may mean your dose needs to be adjusted.
Taking immunosuppressant medication can increase your risk of developing an infection. This is a particularly serious concern for people with SLE, because the organ damage that can occur as a result of the condition means infections are more likely to be life-threatening.
It is therefore very important to report any symptoms of a possible infection to your GP immediately.
Symptoms of infection may sometimes be similar to a flare up of SLE and include:
- a fever (high temperature)
- a cough or breathlessness
- burning when passing urine or passing blood in your urine
You should also try to avoid contact with anyone known to have an infection – even if it is an infection you were previously immune to, such as chickenpox or measles. This is because your previous immunity to these conditions will probably be suppressed (lowered).
Rituximab is a new type of medication used in people with severe SLE that doesn't respond to other treatments.
Rituximab was originally designed to treat certain types of cancer, such as lymphoma, but it has since proved effective in treating a number of autoimmune conditions, such as SLE and rheumatoid arthritis.
Rituximab works by locking on to and killing cells called "B-cells", which produce antibodies responsible for the symptoms of SLE. It is administered directly into your vein over the course of several hours, known as an infusion.
Rituximab is not currently licensed for treating SLE in the UK, but your specialist may consider it an appropriate treatment for you. If your doctor suggests using rituximab, they should tell you that there are currently some uncertainties about how effective or safe it is in treating SLE.
Common side effects of rituximab include:
- flu-like symptoms, such as chills and a high temperature
In rare cases, rituximab can cause a more serious allergy-like reaction. Most reactions occur during or shortly after the treatment is given, so you will be closely monitored once your treatment begins.
Belimumab is a new medication given to people with active SLE who don’t respond to other treatments.
It works by binding to growth factors that are needed for the survival of B-cells. It is given directly into your vein over several hours, known as an infusion. The first 3 doses are given 14 days apart, and the medication is usually given once a month thereafter.
Belimumab is licensed for treating SLE in the UK, and there may be instances where your specialist may consider it an appropriate treatment for you. If your doctor suggests using belimumab, they should tell you that there are currently some uncertainties about how effective or safe it is in treating SLE.
Common side effects of belimumab include:
- flu-like symptoms, such as chills and a high temperature
- nausea and diarrhoea
- difficulty sleeping (insomnia)
- a cough, sore throat and blocked or runny nose
- joint pain
- increased risk of infections
- changes in blood pressure
In rare cases, belimumab can cause a more serious allergy-like reaction. Most reactions occur during or shortly after the treatment is given, so you will be closely monitored once your treatment begins.