Lupus - key facts to know

Tiredness is common and can be severe and debilitating. Other possible features of lupus include anaemiadepression and anxiety, with chest pain or breathing trouble, kidney problems and seizures less common complications.

Doctors love complicated names, and systemic lupus erythematosus is right up there – so it’s hardly surprising that it’s better known as lupus, or its TLA (three letter acronym – ha, ha) SLE. It’s one of a challenging coterie of autoimmune diseases, in which the body’s immune system, which is there to help your body fight off disease, runs amok and instead attacks part of your own body.

Nobody knows why lupus happens, but we do know that some groups (women in their 20s and 30s, particularly of Afro-Caribbean origin) are at much higher risk than others, meaning that genetics and hormones are likely to be involved. But as with other autoimmune diseases such as type 1 diabetes there is probably an interplay of nature and nurture. You may be born with a tendency to develop lupus, but factors in your environment (sunlight, infection, medication or hormone changes) trigger the body’s autoimmune system into inappropriate action.

Men can get lupus, but about 10 times less often than women, and with an overall case load of 1 in 2,000 people, many GPs rarely see it. My practice is in an ethnically diverse area with a high proportion of Afro-Caribbean patients and I have six patients I can think of who suffer from it, including one man diagnosed in his 20s. It’s too uncommon even for GPs like me to have enough experience of it to be experts, and you should always be under long-term specialist follow-up if you’re diagnosed.

This will usually mean regular appointments with a rheumatologist, because joint problems (particularly pain, stiffness and swelling of hands and feet) are among the most common features of lupus. However, unlike other autoimmune joint conditions such as rheumatoid arthritis, swelling and long-term joint deformity is rare in lupus.

As a medical student, you always learn about the ‘butterfly rash’ of lupus, with redness over cheeks and nose. I’ve learnt that this can be hard to spot in people of Afro-Caribbean origin, but even they are often affected by the sun sensitivity seen often in lupus. I recommend that all my patients with lupus avoid sunlight and take a vitamin D supplement – 80-90% of the vitamin D in our bodies comes from sunlight. This redness often comes from effects on blood vessels, meaning that raynaud’s syndrome, which causes painful, white/blue extremities, can often be an issue. Tiredness is common and can be severe and debilitating. Other possible features of lupus include anaemia, depression and anxiety, with chest pain or breathing trouble, kidney problems and seizures less common complications.

Diagnosis is on the basis of blood tests although it can be tricky because lupus can mimic a variety of other conditions. Once diagnosed, your condition needs to be monitored regularly with more blood tests, and sometimes with X-rays, scans or heart tracings, depending on your symptoms.

Treatment will depend partly on your symptoms, and is aimed at keeping your condition under control. Options include anti-inflammatory and/or steroid tablets, or medicine to suppress your immune system. If you’re taking medicines which might affect your immune system, you’ll need to have regular blood tests and must learn to recognise symptoms of possible serious infection and seek medical help quickly.

Although lupus can’t be cured, significant advances in treatment have been made in recent years. Most people go through phases when their symptoms are fairly mild, although tiredness can be an ongoing issue. You can help yourself by avoiding smoking and keeping out of the sun where possible – this often causes flare-up of lupus-associated rashes. There’s a good chance that you will be able to live a normal, active life for years to come – we’re not there yet, but we’re working on it.

Dr Sarah is unable to provide medical advice or respond directly to questions concerning your health. If you have health concerns we recommend contacting your GP.