Systemic lupus erythematosus (SLE), otherwise known as lupus, is a chronic condition that results from a malfunctioning immune system.
The immune system is designed to identify foreign bodies (such as bacteria and viruses) and attack them to keep us healthy. However in the case of lupus, your immune system mistakenly attacks healthy tissue – including the skin, joints, kidneys and lining of the heart and lungs – causing ongoing inflammation and pain.
Types of lupus
There are different types of lupus. The most common type is systemic lupus erythematosus (SLE).
Other types of lupus are:
- discoid lupus erythematosus (DLE) – a chronic skin condition that appears as reddened and round scaly patches that tend to develop in sun-exposed areas such as the face and hands. Sometimes lesions can develop across other areas of the body, including the neck and upper back. There is no cure, but the skin lesions can be managed with medication and by avoiding exposure to sunlight
- drug-induced lupus – some medications can provoke SLE-like symptoms, which then disappear once the medications are stopped. Medications that are known to cause lupus-like symptoms include certain medications used to treat high blood pressure and medications for heart abnormalities
- neonatal lupus – this is a rare form of temporary lupus that affects a foetus or newborn baby. It occurs when the autoantibodies of a mother with SLE are passed to her child before birth. These autoantibodies can affect the skin, heart and blood of the baby.
This information will focus specifically on systemic lupus erythematosus (SLE or lupus).
Systemic lupus erythematosus (SLE or lupus)
Systemic lupus erythematosus is a systemic condition, which means that it can affect the entire body. Lupus can affect the skin, joints, kidneys, brain, and other organs.
Lupus can range from mild to life-threatening. This very much depends on the parts of the body that are being attacked by the immune system. While pain and inflammation of the skin and joints can impact on your quality of life, the damage that lupus may cause to your major organs, such as the kidneys or nervous system, is much more serious.
The most common forms of lupus are milder forms, and most people enjoy a full life, even though they may need to take medications. Lupus is only life threatening in rare cases.
Women in their child-bearing years are most likely to develop lupus. However lupus can affect men, children and older people.
Certain ethnic groups are also more likely to develop lupus, such as African-American women and people of Asian descent.
Symptoms of lupus
The symptoms of lupus can vary and may include:
- skin rashes (both on the face and body)
- joint and muscle pain
- hair loss
- mouth and nose ulcers
- chest pain (as a result of inflammation of the lining of the heart or lungs)
- anaemia (a deficiency in the number or quality of red blood cells)
- poor kidney function
- seizures or visual disturbances (resulting from inflammation of the nervous system)
It’s unlikely that one person will experience all of these symptoms. At times the symptoms you experience as a result of your lupus (such as rash, pain, fatigue) will become more intense. This is called a flare. Flares are unpredictable and can seem to come out of nowhere. They’re often triggered by stress and exposure to ultraviolet (UV) light.
The cause of lupus
The cause of lupus is not known. However it appears that genes may play a role, as well as triggers such as an illness, injury or a period of stress.
Lupus is a difficult condition to diagnose. There is no single medical test that will diagnose lupus. Symptoms can vary greatly from one person to another and are often similar to those of other conditions. It may take months or years to get a definitive diagnosis of lupus.
Your doctor will diagnose your condition using a combination of exams and tests including:
- discussing your symptoms and medical history with you
- physical examination – including your joints and skin to look for any signs of change, inflammation and rashes
- blood tests that highlight the presence of inflammation or particular antibodies.
Test results also help rule out other conditions that may have similar symptoms.
Early diagnosis is important (as soon as possible after the appearance of symptoms), because internal organs such as the kidneys can be affected if targeted by the disease.
Usually a period of high lupus activity (a flare) is followed by a period of remission.
There is no cure for lupus, however there are different medications that can help to control it very effectively. If your condition is controlled early, the likelihood of later complications may be reduced.
There are also many strategies you can use to manage your condition, including physical activity and other lifestyle changes.
Medication can help manage your symptoms and assist in controlling your overactive immune system. Because people with lupus experience different symptoms, and to varying degrees, there is no ‘one size fits all’ treatment. You might need to take a combination of different medications that could include:
- pain-relieving medication (analgesics) – medications such as paracetamol can provide temporary pain relief
- non-steroidal anti-inflammatory drugs (NSAIDs) – for example, naproxen and ibuprofen help control inflammation and provide temporary pain relief
- corticosteroids such as prednisolone are used to quickly control or reduce inflammation. They are used in the early days of your condition, or if you’re going through a flare, to get the inflammation under control. They do have side effects if used for long periods, so your doctor will closely monitor you while you’re taking them
- hydroxychloroquine medications such as Plaquenil are referred to as ‘anti-malarials’ because they were originally used to treat malaria. We now know that they’re very effective at controlling immune system activity in chronic conditions such as lupus. Hydroxychloroquine is effective in treating skin and joint problems associated with lupus. People who take hydroxychloroquine are less likely to have flares, so many people with lupus will take these medications long term
- disease modifying anti-rheumatic drugs (DMARDs) – this group of medications works on controlling your overactive immune system. They help relieve pain and inflammation, and can also reduce or prevent joint damage
- immunosuppressants – these medications including azathioprine, mycophenolate mofetil, cyclosporine, leflunomide, methotrexate, and cyclophosamide modify unwanted activity of the immune system. Each of these medications has particular effects on lupus and particular side effects, so your specialist will closely monitor the effects they have on you.
All medications can have side effects. It’s important you discuss these with your doctor, and know what to do if you experience any side effects. It’s also important that you discuss any other medications or complementary therapies you are taking, as they can potentially affect your lupus medications.
Other things you can do to manage lupus include:
- learn about your condition – you need to understand your condition in order to manage it well. The more you know about your condition (for example what triggers flares, how to manage pain and fatigue) the more control you will have. Understanding your condition means you’ll be able to make informed decisions about your healthcare and play an active role in its management
- manage your exposure to ultraviolet (UV) light. UV light, especially sunlight, can cause a flare. This can include skin rashes in sun-exposed areas. Remember to ‘slip, slop, slap’ by wearing UVA and B sunscreen every day. You should also cover your skin and wear a hat when outdoors. Less commonly, UV light from fluorescent lights, including low energy light bulbs, may induce rashes in some people with lupus
- exercise – regular physical activity has general health benefits. It can also help you manage the symptoms of your condition. When you start exercising regularly you should notice an improvement in the quality of your sleep, an increase in energy levels, a reduction in fatigue, and improvements in your overall strength and fitness. Exercise can also help prevent long-term consequences of lupus such as heart disease and osteoporosis
- learn ways to manage pain – there are many things you can do to manage pain – and different strategies will work for different situations. For example, heat packs can help ease muscle pain, cold packs can help with inflammation, and gentle exercise can help relieve muscle tension. Try different techniques until you find what works best for you
- manage your stress – stress can aggravate your lupus symptoms. Things you can do to manage stress include planning your day and setting priorities, using relaxation techniques such as going for a walk or listening to music and avoiding people and situations that cause you stress
- alance rest and activity – plan your activities to make the most of your energy by alternating periods of activity with rest. Break large jobs down into small achievable tasks so that you don’t overdo things
- eat well – eating a balanced diet can help provide you with better energy levels, help to maintain your weight, and give you a greater sense of wellbeing
- stay at work – it’s good for your health and wellbeing. Talk to your doctor or allied healthcare professional about ways to help you to get back to or to stay at work.
Support for people with lupus
It‘s natural to feel overwhelmed when you’re diagnosed with lupus, as there is currently no cure and it can affect many parts of your life. You may feel scared, frustrated, sad or angry.
It’s important to acknowledge these feelings and get help if they start affecting your daily life. Your doctor, specialist or other health professional will be able to provide you with information about support that is available.
You might also find it helpful to contact a Lupus Peer Support Group and speak to other people who also have lupus and know what you’re going through. Contact MOVE muscle, bone & joint health for information and contact details.
Where to get help
- Your doctor
- Specialist (often a rheumatologist, dermatologist, nephrologist or immunologist)
- MOVE muscle, bone & joint health. National Help Line Tel. (03) 8531 8000 or 1800 263 265
This page has been produced in consultation with and approved by:
MOVE muscle, bone & joint health
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