Lupus, also called systemic lupus erythematosus or SLE, is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs.
Inflammation caused by lupus affects the joints and skin but it can also damage other internal systems such as kidneys, brain, blood, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other conditions. The most distinctive sign of lupus – a facial rash that looks like the wings of a butterfly unfolding across both cheeks – occurs in many but not all cases of lupus.
The most common symptoms of lupus are:
- joint pain and swelling, especially in the hands and feet
- skin rashes
- sores in the mouth or nose
- anaemia (low number of red blood cells).
Dry eyes and mouth, fevers, hair loss, headaches and depression may also occur. Many people with lupus experience ‘flares’ when symptoms are worse for a time.
What causes lupus is not known. Genetic factors and female hormones may play a part. Possible environmental triggers include infections, exposure to the sun, and stress.
About ten times more women than men get lupus, and it is usually first diagnosed in the child-bearing years. Lupus is three to four times more common in Māori and Pacific women and also more common in Asian women.
Who gets Lupus?
Anyone can get lupus (SLE). What causes lupus is not known. Genetic factors and female hormones may play a part. Possible environmental triggers include infections, exposure to the sun, and stress.
About nine times more women than men get lupus, and it is usually first diagnosed in the child-bearing years. Lupus is more common in Māori and Pacific women and also more common in Asian women.
How can I manage my lupus?
There is no cure for lupus and the condition is unpredictable, varying from person to person. With a combination of medication, lifestyle changes, and support from a healthcare team, most people can manage it well.
These are similar to those used for other forms of inflammatory arthritis and include non-steroidal anti-inflammatory drugs (NSAIDS), disease-modifying anti-rheumatic drugs (DMARDs), steroids, biologics and skin preparations.
Changes to your lifestyle can help minimise symptoms, reduce the likelihood of flares and improve your sense of wellbeing. Suggestions include:
- quit smoking
- protect yourself from the sun – use sunscreens to prevent skin rashes
- exercise regularly to prevent muscle weakness and fatigue
- rest and relaxation
- reduce stress
- eat a healthy, balanced diet
- seek support from family, friends, medical professionals, and support groups.
People with lupus can go through periods when the disease is quiet and few, or no symptoms are present. Medications or the
nature of the illness may limit symptoms for a while, but at other times they may flare up. What sets off a flare-up in one person also may differ from someone else.
Knowing your triggers can help prevent flares or stop them from becoming severe. Tracking your flares will help you and your doctor keep your condition under the best possible control. Keep a diary of your lupus symptoms and note things you may have done or things that happened before you had a flare.
Common triggers for lupus flares are
- Ultraviolet rays from the sun, sunbeds, or fluorescent light bulbs
- Infections (colds, flu).
- Certain medications (see below)
- Physical and emotional stress.
To minimise the risk of a flare
- Reduce sun exposure, wear sun-protective clothing and a hat with a wide brim. Use sunscreen when outdoors for longer than a few minutes. Avoid sunbeds.
- Infection control. Protect yourself as best you can from contact with infectious agents, such as viruses and bacteria. Avoid close contact with anyone with a cold, flu, or other contagious condition, and get recommended vaccinations. Wash your hands often to reduce transmission. Wearing a mask indoors in public places also may be helpful.
- Medications that may trigger a flare include:
- Sulfa drugs, such as trimethoprim-sulfamethoxazole (Bactrim, Septra), sulfisoxazole (Gantrisin), tolbutamide (Orinase), and sulfasalazine (Azulfidine)
- Penicillin (Bicillin L-A, Penicillin VK) and related antibiotics, including amoxicillin (Amoxil), ampicillin sodium (Principen), and cloxacillin (Cloxapen).
What’s the situation in Aotearoa?
There are approximately 2,100 people with SLE in Aotearoa New Zealand. Of these 2,100 patients, 1,850 are women, and 250 are men.
The prevalence of SLE is more than three times amongst Pasifika patients and more than 1.5 times amongst Māori and Asian patients compared to Pakeha/New Zealand Europeans.
Where to get support from other people with lupus
Join our Facebook private group for people living with lupus:
Welcome to the lupus online support group. This group has been created by Arthritis New Zealand so that New Zealanders living with lupus can connect with one another, share stories, offer support, and ask questions. It will be monitored during office hours 8.30am – 5pm Monday to Friday, so please bear with us if there is a delay responding to your question.