Lupus is the short name for the condition called systemic lupus erythematosus (SLE). It can cause various symptoms, the most common being joint pains, skin rashes and tiredness. Problems with kidneys and other organs can occur in severe cases. Treatment includes anti-inflammatory painkillers to ease joint pains. Steroids and/or other medication are sometimes also needed.
What is lupus?
Lupus is a persistent (chronic) disease that causes inflammation in various parts of the body. The severity of lupus ranges from mild to severe. There are two main forms of lupus. Discoid lupus only affects the skin and is not discussed in this leaflet. The other form is systemic lupus, which involves the skin and joints and may involve internal organs such as the heart or kidney as well.
Who develops lupus?
Lupus affects about 1 in 1,000 people in the UK. It is about six times more common in women than in men. It most typically develops in women aged between 20 and 49. However, anyone at any age can be affected. It is more common in people of Afro-Caribbean, Asian, or Chinese origin.
Is lupus hereditary?
Although lupus can run in families, only around 3 in 100 children of people with lupus will actually develop the disease. Even in identical twins, if one twin has lupus the other only has a 1 in 4 chance of developing it too. So although there is some hereditary factor, clearly other factors are involved in whether a person develops the condition or not.
What causes lupus?
Lupus is an autoimmune disease. This means that the immune system (which normally protects the body from infections) mistakenly attacks healthy cells. This can cause symptoms and may damage the affected parts of the body. Other autoimmune diseases include diabetes, rheumatoid arthritis and thyroid disorders.
It is not known why lupus occurs. Possible triggers of lupus include infections, medicines (for example, minocycline or hydralazine) or sunlight. Hormonal changes may play a role in lupus, which could explain why it is much more common in women.
The symptoms and severity of lupus vary tremendously between people. Many people have tiredness (fatigue), weight loss and a mild raised temperature (fever). In addition, one or more of the following may develop.
Joint and muscle pains
Most people with lupus develop some joint and muscle pains. Sometimes only a few joints are affected, whereas other people have many joints affected. The small joints of the hands and feet tend to be the ones affected most. The pains may 'flit' from joint to joint. Joint stiffness is common and is usually worse first thing in the morning. Mild joint swelling may occur but severe arthritis with joint damage is unusual.
Lupus rash and skin changes
By Doktorinternet (Own work) [CC-BY-4.0 (https://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
A red rash which develops over the cheeks and nose is common (the 'butterfly rash'). Other areas of skin exposed to sunlight (hands, wrists, etc) may also develop a rash. About 6 in 10 people with lupus find that their skin is very sensitive to sunlight. Various other rashes may develop. The blood vessels just under the skin may also be affected and cause poor circulation to the fingers and toes (Raynaud's phenomenon).
Mouth ulcers are more common in people with lupus.
Lupus and hair loss
Some hair may fall out (alopecia). Any hair loss tends to be minor and cause hair 'thinning' rather than bald patches. However, quite serious hair loss sometimes develops, although the hair often grows back when lupus is less active.
Blood and lymph
A mild anaemia is common. Other blood problems, such as reduced numbers of white blood cells or platelets (the cells that help the blood to clot), are less common. A tendency to form blood clots is an uncommon complication. Some lymph glands may swell.
Heart and lungs
The tissues that cover the heart and lung (the pleura and pericardium) may become inflamed. This can cause pains in the side of the chest (pleurisy) or central chest pains (pericarditis). The actual heart or lung tissue is less commonly affected.
Around 1 in 3 people with lupus may develop inflammation of the kidneys, which can lead to the kidneys leaking protein and blood into the urine. This does not usually cause problems unless the disease is very severe. Chronic kidney disease is an uncommon complication.
Brain and nervous system
Mental health problems in lupus are fairly common and include depression and anxiety. Although mild depression can be part of the disease itself, it can also be due to your reaction to having a serious illness. It is not uncommon for people to have difficulties in coping with having lupus. It is important to share any feelings you have with your doctor, as treatment can be really beneficial. Occasionally, inflammation of the brain can lead to epilepsy, headaches, migraines and other conditions.
How lupus affects the body
In some cases, the symptoms develop quite slowly. At first they may be confused with other problems, as there are many possible causes of joint pains and tiredness. Sometimes several symptoms occur together. Symptoms range from mild to severe. For example:
- Mild lupus. People with mild lupus have mainly joint and/or skin symptoms. These are unpleasant symptoms but are not serious or life-threatening. There may be any combination of the following:
- Joint pains
- Muscle pains
- Skin symptoms
- Mild hair loss
- Moderate lupus. This includes some inflammation of other parts of the body apart from joints and skin. This may include:
- Inflammation of the lungs - pleurisy.
- Inflammation of the heart - pericarditis.
- Inflammation of the liver - hepatitis.
- Inflammation of the joints - arthritis.
- Mild kidney inflammation.
- Inflammation of the scalp with hair loss.
- Severe lupus. In some cases, severe inflammation develops which can cause damage to organs such as the heart, lung, brain or kidneys. This can even be life-threatening.
Typically, there are times when the disease flares up (relapses) and symptoms become worse for a few weeks, sometimes longer. These relapses tend to alternate with times when symptoms settle down (remission). The reason why symptoms flare up or settle down is not yet fully understood.
How is lupus diagnosed?
If your symptoms suggest lupus then your doctor will usually do some blood tests. Most people with lupus have an antibody called antinuclear antibody (ANA) in their blood. (Antibodies are small proteins that are part of the immune system.) Another antibody called anti-double-stranded DNA (anti-dsDNA) is often present in people with lupus. Various other antibodies are also associated with lupus. However, they can also occur in perfectly well people who do not have lupus. Typical symptoms combined with high levels of certain antibodies usually indicate that you have developed lupus.
Once lupus is diagnosed, you will normally be advised to have regular checks and tests. For example, regular blood tests to check for anaemia and urine tests to check for kidney problems. A blood test to measure a blood chemical called 'complement' (another part of the immune system) can assess the activity of the disease. The level of this chemical reflects how 'active' the disease is.
Other tests including scans and X-rays may be advised to check on the function of the heart, kidneys and other organs if the disease is thought to be affecting these areas of the body.
Although there is no cure for lupus, this condition can usually be controlled and symptoms eased. Most people with lupus are seen regularly by a specialist who advises on treatment. The treatments may vary from time to time, depending on the severity of the disease or flare-up of symptoms and also which parts of the body are affected. You may even not need any treatment if you have very mild symptoms. Treatment options include the following:
Non-steroidal anti-inflammatory drugs (NSAIDs)
These are often called anti-inflammatory painkillers and are commonly prescribed to ease joint or muscle pains. Examples of these are ibuprofen, naproxen and diclofenac. The main possible side-effects from NSAIDs are stomach and gut problems, such as pain or bleeding in the stomach. If necessary, other medication can be prescribed to protect the stomach from these possible side-effects.
Hydroxychloroquine is often effective at improving skin problems, tiredness and joint pains that are not well controlled by NSAIDs. It is not clear how this medicine works in lupus. It may take 6-12 weeks for it to become fully effective. The dose is often reduced to a lower 'maintenance' dose once symptoms have eased. Many people with lupus take this medicine long-term to keep symptoms away. Side-effects are uncommon. The most serious is damage to the eye, which is unusual. Your doctor is likely to check your vision before you start it and then every year. If you are taking this medicine and notice any changes in your vision, you should inform your doctor promptly.
Steroid tablets are usually advised if you develop more severe symptoms. Steroids reduce inflammation and the dose is usually given at the lowest possible dose, in order to reduce any side-effects from the steroids. Steroids may cause side-effects if taken for long periods. These include 'thinning' of the bones (osteoporosis), thinning of the skin, weight gain, muscle wasting, high blood pressure and other problems. See separate leaflet called Oral Steroids for more details.
Medicines such as azathioprine, ciclosporin, cyclophosphamide, methotrexate and mycophenolate mofetil may be advised if you have severe lupus. These medicines are known as 'immunosuppressive' because they work by suppressing the immune system. One side-effect of these medicines is that you will be more prone to developing infections. If you take one of these, you need to have regular blood and urine tests to look out for possible side-effects.
Belimumab and rituximab are biological medicines that can be used for severe lupus. See also the separate leaflet called Biological Medicines for Rheumatoid Arthritis for an explanation of biological medicines.
What is the outlook (prognosis) for people with lupus?
Most people with lupus lead active, normal lives. The outlook for people with lupus is much better than it was in the past. Modern treatments are more effective. For many people with lupus, symptoms are mild or moderate with little risk to life. The joint and skin symptoms may continue, but can usually be eased with treatment. For most people with lupus, the pattern of their disease becomes established within ten years; so, if serious problems have not developed in this time then they are unlikely to do so.
For a few people, lupus is severe and can be life-threatening. Severe inflammation of the kidneys, leading to kidney damage, can rarely occur. Severe brain involvement is also rare but can be very serious. However, modern immunosuppressive treatments have improved the outlook, even for people with severe disease. Some people find that symptoms settle in their middle age and they can come off all treatment.
Lupus and pregnancy
Although fertility is not usually affected in people with lupus, some women with lupus have a higher chance of miscarriage. Women who have badly inflamed kidneys, due to lupus, may have high blood pressure in pregnancy. However, most women with mild or well-controlled lupus at the start of pregnancy are likely to go through pregnancy with few problems. Some medicines used to control lupus may not be advisable in pregnancy, so if you are considering becoming pregnant, and you have lupus, plan ahead and see your specialist to discuss this. Extra blood tests can also be done prior to pregnancy to help give you an idea of how likely there are to be complications or problems due to lupus.
Some contraceptive pills may not be advised depending on disease severity. A doctor or nurse will advise on the best method of contraception.
Some other points about lupus
- Avoid the sun. Strong sunlight can aggravate symptoms of lupus. Long-sleeved clothing and wide-brimmed hats are best in sunny weather. On hot sunny days you should wear a sunblock on exposed skin, with a protection factor of 25 or above that protects against UVA and UVB.
- Try to avoid infections. If you have lupus you are more prone to infection, particularly if you take steroids or immunosuppressant medication. Avoid contact with people who have infections.
- Other autoimmune diseases such as Sjögren's syndrome and thyroid problems are more common than average if you have lupus. These are sometimes tested for in people with lupus.
Further reading and references
Gordon C, Amissah-Arthur MB, Gayed M, et al; The British Society for Rheumatology guideline for the management of systemic lupus erythematosus in adults. Rheumatology (Oxford). 2017 Oct 6. doi: 10.1093/rheumatology/kex286.
Henderson L, Masson P, Craig JC, et al; Treatment for lupus nephritis. Cochrane Database Syst Rev. 2012 Dec 1212:CD002922. doi: 10.1002/14651858.CD002922.pub3.
Anic F, Zuvic-Butorac M, Stimac D, et al; New classification criteria for systemic lupus erythematosus correlate with disease activity. Croat Med J. 2014 Oct55(5):514-9.
Rees F, Doherty M, Grainge M, et al; The incidence and prevalence of systemic lupus erythematosus in the UK, 1999-2012. Ann Rheum Dis. 2016 Jan75(1):136-41. doi: 10.1136/annrheumdis-2014-206334. Epub 2014 Sep 29.
Yurkovich M, Vostretsova K, Chen W, et al; Overall and cause-specific mortality in patients with systemic lupus erythematosus: a meta-analysis of observational studies. Arthritis Care Res (Hoboken). 2014 Apr66(4):608-16. doi: 10.1002/acr.22173.
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