Lupus is an autoimmune condition that causes joint pain, skin rashes and fatigue. It affects roughly ten times more women than men, and occurs more often in people of colour than in white people. Around five million people worldwide have a form of lupus, although it can be very difficult to diagnose, because it shares symptoms with a number of other diseases.

Read on to find out more about lupus – and remember that you can connect to a network and community of carers and other people who are living with the condition by joining Carecircle.

What is lupus?

Lupus is an autoimmune disease – in other words, a condition in which the body’s immune system attacks healthy tissue. It predominantly affects women, and people of any age can have lupus – around 20% of people with lupus are children.

Lupus typically affects the skin and joints, but it can also affect internal organs, particularly the kidneys.

Types of lupus

There are four main types of lupus:

• Systemic lupus erythematosus (SLE) – This is the most common form of lupus, accounting for roughly 70% of cases. It causes inflammation across various organs and systems, including the skin, joints, heart, kidneys and lungs.
• Cutaneous lupus – In this form of lupus, only the skin is affected. There are three forms of cutaneous lupus: discoid lupus erythematosus (DLE), acute cutaneous lupus and subacute cutaneous lupus. In each, the skin rashes present in a different way.
• Drug-induced lupus – This disease presents in a similar way to SLE, but is caused by prescription drugs such as minocycline, which is used to treat acne.
• Neonatal lupus – This is a very rare condition in which certain antibodies produced by the mother affect the baby in the womb, causing symptoms such as rashes and liver problems.

Lupus symptoms

The main symptoms of lupus are:

• Extreme fatigue
• Muscle and joint pain
• Skin rashes

However, lupus affects different people in different ways, and it can have a wide variety of symptoms, which makes it difficult to diagnose. Other symptoms include:

• Fever
• Headaches
• Mouth ulcers
• Sensitivity to light
• Hair loss
• Pale or purple fingers
• Chest pain when inhaling deeply

Early lupus symptoms

Lupus is a progressive disease, so the earlier it can be identified, the better. Tell-tale early signs of lupus include skin rashes (particularly a butterfly-shaped rash across the nose and cheeks), unexplained fever and persistent muscle and joint aches, as well as extreme tiredness. If you show these symptoms, you should consult your doctor.

Symptoms of lupus in women

The symptoms of lupus in men and women are broadly similar, but women are more likely than men to have a rash across their nose and cheeks, along with hair loss, mouth ulcers and pale or purple fingers (known as Raynaud’s phenomenon).

Symptoms of lupus in men

Again, the symptoms of lupus in men are broadly similar to those in women, although men are more likely to have complications such as high blood pressure (hypertension), blockages in veins or arteries (thrombosis) and organ damage.

Join Carecircle for free and find help, hope and control with your lupus diagnosis. Our global network for health makes you part of a worldwide community where your voice matters. Together, we can work towards a better future.

What causes lupus?

The causes of lupus are not fully understood, but several ideas have been put forward. Theories have proposed that it is linked with viral infection, particular medicines, sunlight, puberty, childbirth, pollutants or menopause, but research is ongoing.

Studies have shown that certain immune-system genes may be linked to a higher likelihood of developing lupus, although lupus can also occur in people who have no history of the disease in their family.

How is lupus diagnosed?

Because the symptoms of lupus are so wide-ranging, and because they tend to be similar to the symptoms of other diseases, such as rheumatoid arthritis, the diagnosis of lupus is challenging.

If you think you’re showing the symptoms of lupus, speak to your doctor. The first step in diagnosis is to take a blood sample to conduct a series of blood tests, which will detect raised levels of antibodies and signs of internal inflammation. If your tests show high levels of antibodies in your blood, you are likely to be referred for further tests, which could include urine tests, tissue biopsies and scans or X-rays of your internal organs to check for signs of damage.

Lupus test

The main test for lupus is called the ANA (antinuclear antibody) test: about 95% of people with lupus show a positive result in this blood test. The ANA test is not conclusive, however: further tests are required before a diagnosis of lupus can be confirmed.

What to do if you have lupus?

Lupus is a progressive disease, and it’s important to seek help and support to deal with the diagnosis and symptoms. There are several things that can help:

• Stop smoking – This is probably the most important thing you can do to boost your overall health.
• Protect yourself from the sun – The skin often becomes very sensitive in lupus, so make sure to wear a hat when you go out and put on a high-factor (50+) sunscreen.
• Stay active, but pace yourself – It’s important to move and stay active even when you feel extremely tired, but make sure to avoid doing too much. As part of this, you may seek to work reduced or flexible hours.
• Eat healthily
• Seek support wherever you can – Charities like Lupus UK and the Lupus Foundation of America can provide advice, and you can join Carecircle to meet other people who are going through similar experiences.

Join Carecircle for free and find help, hope and control with your lupus diagnosis. Our global network for health makes you part of a worldwide community where your voice matters. Together, we can work towards a better future.

Lupus treatment

There is no cure for lupus, but there are several medicines that can help to ease some of the symptoms:

• Anti-inflammatory medicines, such as ibuprofen, can help to reduce inflammation.
• Steroids, in the form of creams, tablets or injections, can be used to calm external or internal inflammation.
• Monoclonal antibodies that are sometimes prescribed to reduce the load of antibodies in the blood.

Lupus FAQs

Below are a few answers to some of the most commonly asked questions about lupus.

Is lupus hereditary?

An individual is at a higher risk of developing lupus if members of their immediate family have the disease – so there is a hereditary component, but it only increases the risk. If your parent has lupus, it’s not a certainty that you will develop the disease, too.

How do you get lupus?

Lupus is not contagious, but it’s not clear exactly how a person develops the disease. It seems to be triggered by a combination of genetic and environmental factors, and hormones are also thought to play a role.

What is usually the first sign of lupus?

Lupus develops in different ways in different people, but joint pain, rashes and fatigue are usually some of the earliest signs of the disease.

Is lupus a disability?

Lupus is recognised as a disability in the US and UK, although people with lupus might only qualify for disability benefits if their symptoms reach a certain threshold of severity.

Is lupus fatal?

Lupus is not fatal for the majority of people with the disease, and does not have a major impact on life expectancy. However, some people with the disease can suffer severe complications and flare-ups that can result in hospitalization.

Join Carecircle for free and find help, hope and control with your lupus diagnosis. Our global network for health makes you part of a worldwide community where your voice matters. Together, we can work towards a better future.

Lupus resources

Below are a few links to websites that can provide information about lupus:

• Lupus UK
• NHS: Lupus
• Lupus Research Alliance
• Lupus Foundation of America

We hope that this guide has been useful if you or someone close to you has been recently diagnosed with lupus, or if you suspect you or someone close to you shows symptoms. If you’re concerned about any of the symptoms mentioned in this article, speak with your doctor. And remember that there’s a whole community out there on Carecircle who can provide support.

Guide sources

• NHS: Lupus
• Lupus UK
• American College of Rheumatology
• Medical News Today
• Lupus Research Alliance
• Centers for Disease Control and Protection (CDC): Systemic Lupus Erythematosus (SLE)
• CDC: Lupus in women
• Rees, F. et al. The worldwide incidence and prevalence of systemic lupus erythematosus: a systematic review of epidemiological studies. Rheumatology 56, 1945–1961 (2017)
• Lupus Foundation of America: Lupus facts and statistics
• Lupus Foundation of America: Prognosis and life expectancy
• WVU Medicine: Early signs of lupus
• Tan, T. C. et al. Differences between Male and Female Systemic Lupus Erythematosus in a Multiethnic Population. Journal of Rheumatology 39, 759–769 (2012)