- It is estimated that around five million people in the world have lupus
- 90% of cases occur in women
- It’s most common in women of childbearing age (between 15 and 50)
- Only one in 15 cases begin after the age of 50 when it tends to be less severe
- It is more prevalent and tends to be more severe in women of African or Caribbean origin
- About one-third of people with lupus develop an additional autoimmune disease such as autoimmune thyroid disease
The most common symptoms of lupus are joint pain, skin rashes and extreme fatigue, however other symptoms include fever, weight loss, and swelling of the lymph glands. Lupus can range from mild to severe and can affect the body in a number of different ways:
- Mild severity – joint and skin problems, tiredness
- Moderate – inflammation of other parts of the skin and body, including the lungs, heart, and kidneys
- Severe – inflammation causing severe damage to the heart, lungs, brain or kidney that can be life-threatening
The disease often flares up and down, with symptoms becoming worse for a few months or weeks at a time before improving. However, some people have consistent symptoms and don’t notice any difference or flare-ups at all.
Diagnosis and treatment
Because lupus symptoms can be similar to lots of other conditions, it can take time to correctly diagnose. It is usually diagnosed by conducting a blood test – and if high levels of a type of the antibodies ANA (anti-nuclear), anti-dsDNA (anti-double-stranded DNA) and anti-Ro are present, along with typical symptoms, it means that lupus is likely. Once diagnosed, patients might be referred for X-rays and scans of the heart, kidneys and other organs is they are thought to be affected. They will also have regular checks and tests, such as blood tests to check for anaemia and urine tests to check for kidney problems, which lupus can cause.
Lupus treatment aims to suppress the overactive immune system and diminish inflammation. It is generally treated using anti-inflammatory medicines such as ibuprofen, hydroxychloroquine for fatigue and skin and joint problems, and steroid tablets, injections and creams for kidney inflammation and rashes. Newer medicines such as rituximab and belimumab can also be used to treat severe lupus by reducing the number of antibodies in the blood, whilst other ways to manage the condition include eating a healthy, balanced diet, staying active, and getting lots of rest. It’s also important that those suffering from lupus don’t sit in direct sunlight or smoke.
Who treats it
Because lupus is a condition which can cause damage to any part of the body, there are a number of specialists involved in the ongoing treatment and management of the condition. These include but aren’t limited to:
A rheumatologist is a physician who specialises in diseases of the joints and muscles. They care for patients with severe inflammatory conditions and diseases of the joints, muscles and bones, as well as autoimmune diseases such as lupus, and will diagnose and treat it by coming up with a treatment plan to manage the symptoms, prevent flare-ups and reduce organ damage and other complications. Specialist paediatric rheumatologists will treat lupus in children (although this is very rare).
Nephrologists are physicians that specialise in diseases of the kidney. They are part of the team that treats lupus and often help to treat lupus nephritis, which is kidney inflammation caused by lupus and one of the most serious complications of the condition. Nephrologists will diagnose and manage the condition, as well as create an individual treatment plan to manage symptoms and reduce further damage to the kidneys.
Rashes are very common in people living with lupus, and as a result, many patients will have a dermatologist as part of their treatment team. Dermatologists are doctors who specialise in diseases of the skin, and they will help create a treatment plan for those suffering from skin rashes due to lupus. Additionally, they will also help manage photosensitivity, which is another common side effect of the disease.
A pulmonologist is a specialist in diseases of the lungs. Most people with lupus will develop some lung conditions, with pleurisy (chest pain) being the most common lung problem amongst lupus sufferers. It refers to a pain in the chest that occurs during breathing or coughing and is caused due to the inflammation of the membranes that line the lungs and can lead to a build-up of fluid between the pleura.
Cardiologists are doctors who specialise in diseases of the heart. They help to treat complications and conditions involving the heart, such as lupus myocarditis (inflammation of the heart muscle) and lupus pericarditis (the inflammation of the thin sac surrounding the heart that is known as the pericardium).
There are 14 specialist treatment centres in the UK, of which seven are Lupus UK Centres of Excellence. Centres of Excellence must meet a range of criteria such as having a dedicated lupus clinic with three or more consultants covering specialities, at least one consultant with specialist knowledge of lupus, as well as dedicated lupus nurses. These centres all have a multi-disciplinary approach to patient care and liaise with support groups, researchers and other hospitals to ensure they are up to date with all training and development on the management of the condition. For a full list of the UK Centres of Excellence, click here.
At GKA, we have a variety of healthcare professionals on our panel, including over 400 rheumatologists, 574 cardiologists, 250 respiratory specialists and 215 dermatologists. In the last year alone, we have conducted 10 medical market research projects on lupus, including one study where we recruited patients, caregivers and rheumatologists:
Patients and carers
- Recruited 10 patients for eight to take part
- Recruited three caregivers for two to take part
- The project involved two weeks of interaction and a one-to-one interview for 30 minutes each day
- And there was also a follow up 75 minute TDI interview
- Recruited three rheumatologists
- Conducted 60 minute TDI interviews
With over 25 years of experience in medical fieldwork, we can help you find high-quality participants for your lupus market research project. To find out more about the types of participants we can reach for your next medical fieldwork project, download our panel book here.