What you need to know about lupus

Lupus is a long-term (chronic) autoimmune condition, which means your body mistakenly attacks your healthy cells. In lupus, this causes widespread inflammation and pain, which results in a wide range of symptoms that commonly affect the skin, joints and internal organs. 

Its name comes from the Latin word for wolf because in the past, people likened the appearance of the facial rash caused by lupus to wolf bites. 

Today, lupus is thought to affect around 50,000 people in the UK. Its cause remains unknown but genetics, hormones, stress and environmental factors (eg UV radiation from the sun and viral infections) are thought to be involved. 

Types of lupus

The most common form of lupus is systemic lupus erythematosus, which can affect any part of your body. 

Cutaneous lupus only affects your skin. There are many different subtypes, which can affect individuals with varying severity. 

Drug-induced lupus is caused by certain medications and typically resolves when the drug causing the lupus is stopped.

Neonatal lupus refers to lupus that affects newborn babies. It occurs because of the presence of specific antibodies, namely anti-Ro antibodies, which can cross the placenta and reach the developing foetus. As a consequence, the baby can be born with a rash that goes away on its own after a few months. Sometimes the effects can be more serious and can affect the heart. However, not all babies born to mothers with lupus antibodies will develop these complications.

Risk factors for lupus

Lupus predominantly affects women; nine in every 10 individuals with lupus is a woman. It is also more common in women of child-bearing age and rarely occurs in children aged under five years old. 

In women, the risk of developing lupus is highest around puberty and in young adulthood; this risk declines after menopause. 

Lupus is also more common in people of Asian, Afro-Caribbean and African descent.  

Lupus symptoms

Lupus symptoms vary greatly in severity, from mild to debilitating, and can fluctuate over time. Periods when the symptoms are worse are called lupus flares. 

Lupus can also affect many different parts of the body. Symptoms can, therefore, mimic other conditions, which can make reaching a diagnosis challenging. 

Symptoms include:

• Fatigue — persistent and overwhelming tiredness that is not relieved by rest 
• Fevers that are recurrent or a persistent low-grade fever without signs of infection
• Hair loss or hair thinning that can cause bald patches (alopecia)
• Joint and muscle pain swelling or stiffness 
• Ulcers in the mouth or nose that can be recurrent and severe 

Other symptoms of lupus include: 

• Eye problems, such as dry eyes, painful red eyes and blurred vision
• Chest pain or discomfort that occurs when lying down or taking deep breaths
• Gastrointestinal problems, such as abdominal pain, vomiting and diarrhoea
• Kidney problems — signs of kidney problems include  protein or blood in the urine; symptoms include ankle swelling or frothy urine
• Neurological problems, such as headaches and mood disorders
• Raynaud’s phenomenon where your fingers and toes change colour, turning white or blue, in response to cold

It is important to remember that not all individuals with lupus will experience all of these symptoms.

Getting a diagnosis of lupus

Diagnosing lupus can be challenging. There is no single test for lupus and, consequently, your rheumatologist (a doctor who specialises in treating inflammatory autoimmune conditions) will reach a diagnosis based on evaluating your symptoms, medical history and a clinical examination. They may also perform additional tests, such as blood tests and urine tests. 

Treating lupus

Although lupus cannot be cured, treatments are available that focus on managing your symptoms through reducing inflammation and minimising damage to your organs. 

Treatment plans are individualised based on your specific symptoms, disease severity and the organs involved. Each treatment has benefits and risks and any treatments offered will be carefully considered.

A common treatment for managing lupus is steroids. The long-term use of steroids can cause problems such as an increased risk of infections, osteoporosis and high blood pressure. You may, therefore, need to have additional treatments, such as calcium and vitamin D supplements and/or blood pressure medication to counteract the side effects of steroid treatment.

To try and minimise any side effects, you may be offered steroid-sparing drugs, such as DMARDs (hydroxychloroquine, methotrexate, ciclosporin, azathioprine, mycophenolate mofetil),  biologics (belimumab or rituximab) or cyclophosphamide to bring your lupus under control and enable your steroid dose to be reduced.

Lifestyle changes to manage lupus

Lifestyle changes can play a crucial role in complementing your medical care and can help reduce flares and improve your overall health and wellbeing.

Below are several different ways you can adjust your lifestyle to help manage your lupus. 

Diet 

Eat a healthy and balanced diet and stay well hydrated.  

A healthy diet should include plenty of fresh fruits and vegetables as they are rich in vitamins, minerals, antioxidants and fibre. 

You should avoid processed food and refined carbohydrates and should choose healthy fats such as those found in nuts and seeds.  

Certain spices such as turmeric, ginger and garlic have also been shown to have anti-inflammatory properties, which may be helpful for managing lupus.

Exercise

Regular, gentle physical activity can help improve your mood, reduce fatigue and maintain your overall fitness. It will also help to maintain your muscle strength and bone health. However, be sure to listen to your body and avoid overexertion, especially during flares.

Quit smoking

Smoking or vaping activates your immune system and can make your lupus symptoms worse. It also increases your risk of cardiovascular disease, which is already elevated in individuals with lupus. 

If you smoke, it is very important to consider quitting, and you should also avoid exposure to second-hand smoke whenever possible.

Sun protection

UV radiation can trigger a lupus flare. Avoid sun exposure by staying indoors or seeking shade during peak sunlight hours, wearing protective clothing (such as a sun hat, long-sleeved tops and trousers) and applying high-factor sunblock (SPF 50).

Sleep and stress

Lupus flares can be triggered by poor sleep, overexertion and stress. Consequently, getting enough sleep, maintaining a healthy work–life balance and getting enough rest when you need to can help.  

Learning how to better manage your stress levels is also important. There are various stress reduction techniques that you can explore, such as deep breathing, meditation, yoga, mindfulness or even taking time to read a book or listening to relaxing music.

Infections and vaccinations

Infections can trigger lupus flares as they activate your immune system. If you have lupus and are also on immunosuppressive medication, you are more susceptible to infections.  

Preventative measures to reduce your risk of infection are, therefore, advised. This includes practising good hand hygiene and avoiding close contact with sick individuals to minimise your exposure to potential sources of infection.   

Ensuring your vaccinations are up to date, as well as those of the people you live with can also help protect against contracting infections. If you are on immunosuppressive medication, you may need to carefully time your vaccinations and avoid live vaccines — you can discuss this with your rheumatologist. 

Outcomes for lupus

Long-term outcomes for lupus have improved with better treatments now available.  

Some individuals with lupus can experience complications over time, such as organ damage, chronic pain, disability and a reduced life expectancy. Early detection, regular monitoring and medical treatments can help minimise the risk of complications and improve your long-term outcomes. 

It is important to highlight that while lupus can pose significant challenges, many individuals with lupus are able to effectively manage their condition and lead fulfilling lives.

Lupus and fertility

The effect of lupus on pregnancy differs from one person to the next. If you are considering starting a family, speak to your rheumatologist so that they can discuss how pregnancy may affect you. 

Although there is no direct link between lupus and reduced fertility, lupus can reduce the overall health of your body, which can, in certain circumstances, make becoming pregnant more difficult or make the pregnancy more risky for you and your unborn baby.  

If your lupus is well controlled and your general health is good, this can improve your chances of a successful pregnancy. 

Working closely with your healthcare team before conceiving will help. Changes to your medication may be needed, such as switching medications to those that are safe at the time of conception and during pregnancy. You may also need extra monitoring. 

If you have lupus and find you have unexpectedly become pregnant, it is important to discuss this with your healthcare team as soon as possible so that appropriate checks can be made.