Lupus (SLE)

Lupus is an autoimmune condition: the immune system, which normally defends the body, mistakenly produces antibodies against the body's own tissues, driving inflammation in the joints, skin, blood and internal organs. Why this happens is not fully understood. It is thought to arise when a genetic susceptibility meets a trigger such as sunlight, a viral infection, certain medicines or hormonal change, rather than from any single cause.

Lupus is far more common in women, and most often begins between the teens and the forties. It is also more common, and can be more active, in people of African, Caribbean, South Asian and East Asian heritage. A family history of lupus or other autoimmune conditions, such as Sjögren's syndrome, can add to the risk.

Lupus can be very variable, and not everyone has the same features. Common ones include:

• Joint pain and swelling, and muscle aches
• Persistent tiredness
• Skin rashes, including across the cheeks and nose, and sensitivity to sunlight
• Mouth ulcers, hair thinning, or colour changes in the fingers in the cold
• Fevers, or a general sense of being unwell

Symptoms can come and go, with flares and quieter periods, which is part of what makes lupus challenging to recognise.

There is no single test for lupus. The diagnosis is built up from the pattern of symptoms, an examination and a range of blood and urine tests, including tests for particular antibodies. Because the picture can develop over time and overlaps with other conditions, specialist assessment is important to draw the threads together.

Where joints are involved, ultrasound can help assess inflammation accurately. Dr Borukhson uses point-of-care ultrasound during the consultation. You can read more on the ultrasound clinic page.

The aim of treatment is to control the overactive immune response, manage symptoms, protect the organs that can be affected, and reduce flares. Treatment is highly individual, depending on which parts of the body are involved, and is reviewed regularly over time.

Hydroxychloroquine is the cornerstone of treatment for most people: a long-established tablet that calms the condition and reduces flares, and one that most people stay on long term. It is generally well tolerated, though it needs periodic eye checks because, rarely, it can affect the retina after years of use. A short course of corticosteroid can settle a flare, and where internal organs are involved, immunosuppressant medicines such as azathioprine or mycophenolate, or biologic therapies, may be added; these can raise the risk of infection and need regular blood test monitoring, so they are used under specialist supervision and discussed fully with you. Because lupus is a long-term condition that can change, and because lupus and some of its medicines need careful planning around pregnancy, ongoing specialist input is valuable. The plan is always agreed with you.

Lupus can affect many different parts of the body, so care sometimes needs input from more than one specialty. Dr Borukhson practises within a world-renowned tertiary centre, with ready access to consultant colleagues across the other specialties that may be involved in caring for this condition. Where appropriate, she can involve those specialists directly, and bring particularly complex cases to a multidisciplinary team meeting (MDT) with minimal delay. This means that, when more than one area of expertise is needed, your care can be joined up and decisions reached promptly.

Lupus is usually a long-term condition with flares and quieter spells, and most people, with the right treatment and review, live full and active lives. A few habits genuinely help.

• Protect your skin from the sun, with high-factor sunscreen, shade and covering up, since ultraviolet light can trigger both rashes and flares.
• Do not smoke, as smoking worsens lupus and blunts how well hydroxychloroquine works.
• Pace yourself with gentle, regular activity and adequate rest to manage fatigue, and keep up routine vaccinations.

Learn your own early warning signs of a flare, and keep your eye checks and blood tests. If you are considering pregnancy, raise it early, as covered in arthritis, autoimmune conditions and pregnancy.

Most lupus symptoms can be managed through planned review, but some warrant prompt attention. Arrange an urgent assessment, or attend A&E, if you develop:

• A high fever, particularly while taking immunosuppressant or biologic medicines, which can mask serious infection
• Chest pain or breathlessness, severe headache, seizures, confusion, or new weakness or numbness
• Frothy or bloody urine, or marked swelling of the ankles or face, which may point to kidney involvement
• Sudden vision changes, or a painful, swollen or discoloured limb

Book a routine but timely review for a flare of joint pain, rashes, mouth ulcers or rising fatigue, so treatment can be adjusted before things escalate. When in doubt, it is always reasonable to ask.

Lupus is complex and varies widely, so an accurate diagnosis and a carefully tailored, regularly reviewed plan make a real difference. If you have a combination of joint pain, fatigue, rashes and other unexplained symptoms, a specialist review can help bring clarity.

How is lupus diagnosed?

There is no single test that proves or rules out lupus. The diagnosis is pieced together from the pattern of your symptoms, an examination, and blood and urine tests, including checks for particular antibodies. Where joints are affected, ultrasound during the consultation can help show whether they are inflamed.

Why can it take time to reach a lupus diagnosis?

Lupus varies greatly from person to person, its features overlap with several other conditions, and the full picture can emerge gradually. A first assessment may give a clear answer, or it may begin a period of review while results and evolving symptoms are weighed together. The aim is a diagnosis you can rely on, rather than a hurried label.

Will I need to take medication long term?

Most people with lupus remain on hydroxychloroquine in the long run, because it settles the condition and makes flares less likely, and it is generally well tolerated. Other medicines, such as a short course of steroids for a flare, or immunosuppressants and biologics where internal organs are involved, are added only when needed. Treatment is highly individual and is reviewed regularly as things change.

What monitoring will I need?

It depends on your treatment. Hydroxychloroquine needs periodic eye checks, because in rare cases it can affect the retina after many years of use, while immunosuppressant and biologic medicines need regular blood tests and watchfulness for infection. Regular specialist review also matters in its own right, because lupus can change over time.

What should I know about lupus and pregnancy?

Lupus, and some of the medicines used to treat it, need careful planning around pregnancy. If you are thinking about starting or growing a family, raise it with your specialist early, so treatment can be reviewed and any changes made in good time. This is one of the reasons ongoing specialist input is so valuable in lupus.