Living with lupus presents unique and often deeply personal challenges—especially when early lupus symptoms can be so varied and easily overlooked. From persistent fatigue and joint pain to more complex organ involvement, the condition affects each person differently, both physically and emotionally. Navigating these uncertainties can be overwhelming, but with the right support, knowledge, and care, it is possible to lead a fulfilling and empowered life.
This post offers practical advice and insight to help you better understand lupus symptoms, manage your health with confidence, feel less alone in your journey and improve your overall quality of life.
Lupus is a chronic autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling and damage to joints, skin, kidneys, blood, the heart and lungs. As the symptoms are shared with other conditions, it can be hard to diagnose.
Around 50,000 people are thought to have lupus in the UK and about 90% of these are women.
The causes of lupus are still poorly understood but it is thought to be due to a combination of factors from both inside and outside the body including hormones, genetic and environmental factors.
What are the main types of lupus?
Systemic lupus erythematosus – This condition is what most people mean when they refer to lupus. SLE can affect body tissues in any organ or part of the body. It can affect a person’s quality of life through pain, fatigue, anxiety and depression. Discoid lupus erythematosus – DLE is usually a milder type of lupus and normally affects only the skin. Symptoms include red, circular, scaly marks on the skin, hair loss and bald patches. A person with this condition may have to avoid direct sunlight. Drug induced lupus – More than 100 medications are known to cause lupus symptoms in some people. These usually stop if the medication is stopped or changed after seeking medical advice.
What are the symptoms of lupus?
The symptoms differ from one person to another and depend on the type of lupus but some of the more common ones include:
Joint pain (arthralgia) Swollen joints (arthritis) Unexplained fever of more than 38C or 100.4F Skin rash Prolonged or extreme fatigue Swollen lymph glands A butterfly-shaped rash across the cheeks and nose Ankle swelling and accumulation of fluid Depression and anxiety Anaemia Hair loss Pale or painful fingers or toes from cold or stress (Raynaud’s disease) Headaches or migraine Memory loss Mouth or nose ulcers Shortness of breath
It is important to note that lupus is not a contagious disease. Symptoms can flare up making the patient feel ill, before a period of remission or symptom improvement occurs.
Lupus complications
People with SLE are more likely to have another autoimmune condition and complications can lead to kidney failure, heart disease and stroke. SLE can also be a concern in pregnancy as it may increase the risk of miscarriage, pre-eclampsia, stillbirth and premature birth.
How is lupus diagnosed?
The diagnosis is made when a person has several symptoms of the disease. Blood tests may also be carried out to confirm the diagnosis. These could include an antinuclear antibody (ANA) test or an anti-DNA antibody test.
It can be a difficult disease to live with as it can make a person feel tired and weak, causing them to withdraw from social activities. The disease is often “invisible” making it hard for others to understand what you are going through. Treating and managing lupus symptoms, therefore, becomes vitally important for your quality of life.
There is currently no cure for the condition but it can be treated effectively and most people with the disease can lead active, healthy lives.
How is lupus treated?
There is no cure at present but there are a number of treatments that may help manage the condition. Such treatments aim to prevent flare-ups, alleviate symptoms and reduce organ damage and other complications.
The type of treatment recommended will depend on several factors including the person’s age, overall health, medical history and location and severity of the disease.
Medication used to treat lupus symptoms include:
NSAIDs are non-steroidal anti-inflammatory drugs which reduce pain and inflammation in the body. Corticosteroids may be recommended to reduce inflammation and help symptoms. Hydroxychloroquine may help with rashes, joint and muscle pain, and fatigue. Immunosuppressants may help to stop the body’s immune system attacking healthy cells. Biologicals such as rituximab or belimumab which work by inhibiting the process whereby the immune system attacks the body.
Managing lupus
In addition to your medication, there are also steps you can take to improve your sense of wellbeing and your quality of life. These include:
Exercise – Low-impact activities such as walking, cycling and swimming can help prevent muscle wasting and lower your risk of developing osteoporosis. Exercise can also have a positive impact on your mood. Eat well – As with most health conditions, you should eat a balanced nutritious diet. Avoid alcohol – Alcohol can interact with your medication and can lead to stomach problems such as ulcers. Avoid stressful situations – Try to resolve stress, depression or anger. Don’t smoke – Smoking can impair circulation and worsen symptoms leading to problems with your heart, lungs and stomach. Have enough rest – Pace yourself by alternating periods of activity with periods of rest. Take care in the sun – Sufferers may develop rashes or disease flare-ups when exposed to the sun. Wear sunglasses, a hat and sunscreen when you go out in the sun. Also try to avoid too much exposure to fluorescent lights. Treat fevers – A fever may indicate an infection or flare-up so seek treatment promptly. Get to know your disease – Keep a record of your symptoms and any activities or situations which seem to trigger them. Get to know your doctor – Build an honest and open relationship with your doctor as it often takes time to find the best medication and dosage for your individual symptoms. Don’t be afraid to ask questions and try to be patient. Be open with your friends and family – Explain about the ups and downs of your condition and encourage their support and understanding. Get to know others with lupus – Consider joining a support group or contact a charity such as Lupus UK. You can find out more about their work by clicking on the link below.
❓ Frequently Asked Questions: Living with Lupus in the UK
How many people in the UK live with lupus? Approximately 1 in 1,000 individuals in the UK live with lupus—around 50,000 people, with the condition affecting women far more commonly than men (about 90% of cases). Are certain communities more impacted than others? Yes. According to recent NHS data, Black individuals are eight times more likely to be hospitalised with lupus than White individuals in England. Asian communities also show elevated rates. These disparities are linked to delayed diagnoses, systemic inequities, and less public awareness. What proportion of hospitalisations are rising over time? Hospital admissions in England where lupus was the main diagnosis increased by 26% from 2019–20 to 2023–24, highlighting a growing need for improved awareness and access to care. Are new treatments being trialled in the UK? Yes. The UK will launch the STRATIFY Lupus trial across 16 sites in 2026, testing a combination of rituximab and belimumab in patients with a specific biomarker. Early data suggests those with the IgA2 anti-dsDNA antibody are 17 times more likely to respond to this combination than rituximab alone. What about gene therapy or CAR T-cell therapies? Gene therapy using CAR T-cells—commonly used in cancer care—has recently shown promising results in UK lupus patients. Some have achieved remission and discontinued traditional medications, though this approach remains in early clinical stages and includes infection risks. What percentage of lupus patients are women, and why? Roughly 90% of lupus cases occur in women, often between the ages of 15 and 45. The condition is thought to be influenced by hormonal and genetic factors, including genes on the X chromosome. What improvements are coming in treatment guidelines? The British Society for Rheumatology is updating its lupus guidelines to take a whole-life course approach, improving consistency in care across childhood and adult lupus and reducing postcode-related treatment disparities in the UK. How effective are existing medications like hydroxychloroquine? Hydroxychloroquine remains a cornerstone of lupus treatment. It slows disease progression, helps manage skin and joint symptoms, and protects against organ damage—without the weight gain often linked to corticosteroids.
Most people with lupus can expect to have a normal life span especially if they follow their doctor’s recommendations and their treatment plans. Medicine has made great advances over the last few years. Thanks to modern drugs, sufferers now have a normal life expectancy and can have a better quality of life.
If you would like to find out more about the condition, please click on this link to Lupus UK.
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