Lupus affects roughly 15,000 people in the UK, yet chances are many people haven’t heard of it.
Celebrities diagnosed with the autoimmune condition include Selena Gomez, Lady Gaga and Toni Braxton.
For those who are unsure of what lupus is, or believe that it’s something they might suffer from, we’ve compiled a list of the symptoms to watch out for, plus information on how to get diagnosed and access treatment.
What Is Lupus?
Lupus is an autoimmune condition, where the immune system starts to attack and inflame healthy cells, tissue and organs.
Dr Nitin Shori, medical director of the Pharmacy2U Online Doctor service and a working NHS GP, says: “It is a complicated and often misunderstood condition as it affects many parts of the body. There is a great variation in symptoms with most patients having mild to moderate symptoms.
“However, the effects of lupus on organs such as the kidneys can make it life-threatening.”
The condition affects roughly 15,000 people in England and Wales and is thought to affect women more because of hormonal activity. It is often triggered after childbirth, during the menopause, during puberty and usually between the ages of 15 and 55, according to Lupus UK.
There are a few different types of lupus, including some which solely affect the skin (discoid lupus erythematosus and subacute cutaneous lupus erythematosus), as well as a more severe form which can affect the skin, joints and organs. The latter is called systemic lupus erythematosus (SLE).
Symptoms of SLE vary greatly and can range from mild to severe. It can be difficult to diagnose as the symptoms are similar to a number of other, more common, conditions.
According to the NHS, the main symptoms are:
- Rashes – particularly on the face, wrists and hands
- Joint pain and swelling
Other less common symptoms include: fever, swollen lymph glands, recurring mouth ulcers, hair loss, high blood pressure, headaches and migraines, stomach pain, chest pain, depression, dry eyes, memory loss, seizures, psychosis, shortness of breath, ankle swelling and fluid retention, and Raynaud’s phenomenon - where blood supply becomes limited to hands and feet when it’s cold.
According to Paul Howard from Lupus UK, anxiety can be a common symptom in people with lupus - in fact roughly 25% of those with the condition will suffer from it.
“Most lupus experts do not believe that anxiety is actually caused by lupus itself,” he explains. “They doubt that it is due to the immune system attacking the brain, but it can arise as a response to having a chronic painful illness and can potentially be caused or exacerbated by some of the treatments used to control the disease.”
He adds that mood disorders such as depression are one of the most common problems for people with lupus, affecting approximately 57%.
“Stress is a common trigger for lupus flares, and people who have anxiety and depression can become more easily stressed, which theoretically could in turn worsen their lupus,” he explains.
“We’d recommend that if somebody suspects that they may have lupus, that they create a list of the symptoms they have experienced and ask their GP to refer them to a rheumatologist for further investigations,” advises Howard.
“Many GPs do not have a specialist knowledge of lupus and will not have the expertise or access to certain tests required to make a diagnosis.”
There isn’t a blood test that will confirm a diagnosis of lupus, so a diagnosis is usually made based on a variety of tests, a review of the patient’s symptoms and a detailed physical examination.
“If a GP is reluctant to make a referral, you can request an antinuclear antibody (ANA) test,” explains Howard.
“This is positive in 95-98% of people with lupus and whilst it is not conclusive evidence - it can also be seen in some other autoimmune conditions and 5-10% of the healthy population - it is a clinical marker and should provide sufficient support for a referral.”
There are a variety of treatments used to manage lupus, however there isn’t a cure.
“Since lupus is a very varied condition, affecting patients differently, not all of them will be used for each individual,” explains Paul Howard.
“The most frequently prescribed treatments include: non-steroidal anti-inflammatory drugs (NSAIDS), anti-malarial treatments and corticosteroids, which can all be effective in controlling the symptoms of lupus.”
He adds that in moderate to severe cases, immunosuppressant treatments are used to reduce the steroid dosages needed and bring lupus under control.
“Immunosuppressants can include low doses of chemotherapy treatments such as methotrexate which are also used for treating some cancers,” he says.
“Many of the treatments used for lupus are actually licensed for other conditions such as rheumatoid arthritis but have proven to be helpful for some patients.”
Surprisingly, only one new treatment for lupus has been made available in over 50 years.
“Benlysta (Belimumab) was finally approved for limited use on the NHS in England and Wales after a five year delay from the National Institute for Clinical Excellence (NICE),” he explains.
“Lifestyle changes such as avoiding exposure to UV light, eating a healthy balanced diet, participating in regular physical activity and pacing are also very important in the management of lupus.”