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Systemic Lupus Erythematosus

What is systemic lupus erythematosus (SLE)?  

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease in which the body’s immune system attacks and causes inflammation in its own tissues. Inflammation results in swelling, pain and other symptoms. As a result of SLE, the skin, joints, kidneys, heart, lungs, blood vessels, the nervous system and almost any other organ can be affected. SLE can vary in severity; from mild to very severe. A person may experience active periods (commonly known as flares or flare-ups) and times where there is decreased activity or even inactivity (remission). 

SLE affects about one in every 2,000 Canadians. Men, women and children can all be diagnosed with SLE but it is far more common in women (90% of persons with SLE are women). 

In addition to SLE, there are other types of lupus that primarily affect the skin.  Discoid lupus erythematosus (DLE) and sub-acute cutaneous lupus (SCLE) are types of lupus where skin rashes and sun sensitivity are the primary symptoms. Some people with skin lupus also develop systemic lupus but most do not. 

What are the symptoms of SLE? 

Some call SLE “the disease of 1,000 faces” because the symptoms and signs of SLE are different for each person.  These signs and symptoms can be mild or severe and may include one or more of the following: 

  • A red rash across the cheeks and nose (also called a butterfly or malar rash) 
  • Sensitivity to sunlight and/or ultraviolet light 
  • Small, painless sores in the roof of the mouth or in the nose (mucosal ulcers) 
  • Arthritis, especially in the hands and feet (joints are painful and swollen)  
  • Lower amounts of red blood cells, white blood cells or platelets in the blood 
  • Autoantibodies (proteins in the body that abnormally attack healthy body tissue) can be detected by blood tests 
  • Inflammation in the lining of the lungs or inflammation of the lining of the heart, which causes chest pain when lying down or taking deep breaths 
  • A mild or severe decrease in kidney function, which can cause swelling of the feet and legs 
  • Problems with the brain or nervous system, which can cause abnormal thoughts, seizures, memory and concentration problems as well as many other symptoms 

How is SLE diagnosed? 

Your doctor will make a diagnosis based on your symptoms, a physical examination and laboratory test results. A definite diagnosis may be tricky at first, as SLE can involve almost any single or combination of organs or tissue in the body. Signs and symptoms of SLE can be different for every person with the disease. 

One test that is used to help detect autoimmune disorders such as SLE is the anti-nuclear antibody (ANA) test. It is important to remember that a positive ANA is very common, even in healthy people.  So a positive ANA test does not necessarily mean that you have SLE.  There is no single blood test that by itself makes a diagnosis of SLE; a specialist must make the diagnosis after looking at the results of both a physical exam and blood tests. 

How common is SLE? 

SLE occurs in about 1 in 2,000 Canadians, and 90% are women. Although SLE can occur in any age, including childhood, it is much less common in the very young and the very old.  

Lupus in children and adolescents is most commonly SLE and frequently affects many organs.  Information on lupus in children can be found at About Kids Health.

What are the risk factors for SLE? 

The cause of SLE is unclear, but researchers believe it results from a combination of genetic and environmental factors. Possible environmental triggers include sun exposure, common viruses and, rarely, certain drugs. Smoking may also be a trigger for SLE, which is another reason not to smoke. 

What body parts are affected by SLE? 

SLE can affect almost any part of the body, including: 

  • Joints 
  • Skin 
  • Blood (changes in white cell, red cell and platelet counts) 
  • Kidneys 
  • Heart and lung lining 
  • Blood vessels (uncommon) 
  • Brain (uncommon) 
  • Other organs, such as muscles and liver 

SLE and sun exposure 

People with SLE may have sun-sensitive skin, also known as photosensitivity. This means exposure to sun and even artificial lighting can cause those living with SLE to experience increased disease activity. Try to avoid prolonged sun exposure and be especially careful at mid-day when ultraviolet light is strongest. Use a sunscreen with an SPF 30 or higher. Also remember to reapply sunscreen liberally and frequently after spending time outside or in the water. Other UVA protection can be provided by wearing sun protective clothing and using sun shields on your house and car windows. Avoid tanning beds altogether. 

SLE and pregnancy 

While most women with SLE are able to deliver healthy babies, some pregnancies are particularly high-risk. Specifically, women with SLE tend to have a higher than normal risk of miscarriage, premature delivery and preeclampsia (a condition that pregnant women develop, marked by high blood pressure and high levels of protein in the urine). These conditions however are relatively rare. In some women with SLE, who have specific types of antibodies, may be a slight increase in heart problems in the baby. To ensure the best outcome for you and your baby, the first step is to meet with your doctor about a year in advance of when you plan to become pregnant so that you can discuss ideal timing and a treatment plan. For example, your doctor may recommend that you stop taking certain medications and that you schedule meetings with other health-care specialists, such as an obstetrician who specializes in high-risk pregnancies. Generally, the safest time to become pregnant is when SLE is inactive.  

Medications 

Some medications used to treat lupus are the same as those used to treat other types of arthritis, including rheumatoid arthritis (RA) and childhood arthritis. Medications for SLE are aimed at controlling inflammation and minimizing disease activity so that no long-term organ damage occurs.

These medications can be quite complex, so you are encouraged to ask for in-depth explanations from your health-care team – including pharmacists, who are an excellent source of information.  

To explore this area of treatment, The Arthritis Society has developed a comprehensive expert guide that delivers detailed information on medications used to treat SLE and other conditions.

EXPLORE: Arthritis Medications – A Reference Guide

The optimal treatment is what is best in each individual case – so speak with your doctor and/or pharmacist about what kind of medications are most appropriate for you. 

Vitamin D and corticosteroids 

It is important to follow a highly nutritious diet with plenty of calcium and vitamin D.  Most women need supplemental vitamin D, and this may be particularly important in people with SLE. Vitamin D is produced by sunlight shining on the skin. People with SLE may need to avoid sun exposure, which can contribute to vitamin D deficiency.  

Corticosteroids (prednisone) are useful for decreasing some symptoms of SLE, but can decrease bone strength and increase the risk of fractures, especially when taken long term. Some research has shown that having vitamin D in the blood can lower SLE disease activity. Doctors usually recommend calcium and vitamin D supplements when taking high-dose corticosteroids, and possibly other medications. 

Consult your health-care provider about how much to take, but 10,000 units a week is often the dose of vitamin D that is recommended. 

Surgery 

People with SLE generally do not require surgery to treat their disease, but they may require biopsies (samples of tissue), most frequent from the skin and kidney.  This procedure may or may not require a stay in hospital.  Rarely, other tissues may be biopsied to help with diagnosis or treatment decisions, including organs such as the lymph glands, salivary glands, liver, bone marrow, lung or brain. 

There are many strategies that can help you manage life with SLE. Regular check-ups with your health-care provider(s) are usually necessary, so that you (and they) can detect any early warning signs of a flare, leading to earlier treatments. 

Each person’s pattern of SLE is unique. However, most people with SLE can look forward to leading a regular life if they follow the advice of their doctor(s), take medication(s) as prescribed and seek help for new symptoms or medication side effects. 

Controlling flares is important in the day-to-day management of SLE. Adopting a healthy lifestyle is essential. This includes a nutritious diet, exercise, keeping an ideal body weight, not smoking, getting enough sleep, wearing sunscreen and managing stress levels. 

People with SLE are believed to be at increased risk for heart attacks and strokes, possibly due to inflammation related to the disease. People with SLE may also have high blood pressure, high cholesterol and diabetes. For these reasons, it is good to have a family doctor who can help monitor your cholesterol, blood pressure and blood sugar as needed. Maintaining an optimal weight and regular exercise is also important.
Other things you can do to stay healthy is to follow regular screening programs, as advised by your family doctor. Women with SLE should have regular Pap (cervical cancer) screening as pre-cancerous cervical changes are more common in women with SLE. 

Physical activity  

Exercise can help promote general well-being. It may also help fight depression and even reduce the risk of serious health problems like a heart attack.  Ask your doctor about participating in exercise programs. If you have had joint replacement surgery, ask a health-care professional about what kind of activities to avoid (even for stretching and yoga) as certain positions can endanger the replacement (but don’t let this discourage you from exercise altogether!)  

Physical activity protects joints by strengthening the muscles around them. Strong muscles and tissues support those joints that have been weakened and damaged by arthritis. A properly designed program of physical activity (with advice from a health-care provider, such as a physician or a physiotherapist/occupational therapist) may improve mobility, strength and overall fitness as well as help with depression. Note, however, if you are experiencing a flare and  some joint(s) are swollen and painful, you should take it easy and only perform light range-of-motion exercises, swimming and similar exercises that are not too hard on your joints. 

There are different types of range of motion and strengthening exercises you can do that may lessen your pain and stiffness.  Low-impact and higher-impact aerobic exercise that gets your heart pumping can help improve your sleep, keep your weight under control and alleviate the stress and depression that is sometimes linked to SLE.  

  • Range of motion (also called stretching or flexibility exercises): Exercises that reduce pain and stiffness and keep your joints moving. To achieve the most benefit, these exercises should be done daily. Also, watch our "Simple Stretches" video. 
  • Strengthening:  Exercises that maintain or increase muscle tone and protect your joints. These exercises include weight training movements done with a set of “free” weights, your own body weight or weight machines. 
  • Endurance: Exercises that strengthen your heart, give you energy, control your weight and help improve your overall health. These exercises include walking, swimming and cycling. Although doctors generally discourage contact sports such as football, many people with SLE are able to do a wide variety of higher-impact exercises like running.   

There are many low-impact exercise options that can benefit people living with SLE: 

  • Tai chi:  An ancient Chinese martial art, Tai chi is a combination of movements performed in a slow, focused manner. Though it has many variations and styles, Tai chi is a low-impact exercise and is reminiscent of both yoga and meditation. Tai chi could improve pain and physical function in some people as well as improve depression and contribute to health-related quality of life. 
  • Yoga: Studies have been done on the benefits of yoga on stress and anxiety. The practice of breath control, simple meditation and stretching can improve a person’s state of mind and help them better manage their pain. Regular yoga under the guidance of a certified instructor can also boost one’s general health and increase energy levels. You should ask your doctor about strenuous yoga routines, such as Bikram and power yoga. 
All sports can be considered and many levels of exercise can be beneficial; provided they do not increase pain to unmanageable levels. Consult your health-care provider to find out what exercises are suitable to you. 

Healthy eating 

Healthy eating will give you the energy to complete your daily activities as well as to promote health. Three general ways to improve your nutrition include: 

  • Reduce your fat intake: A healthy diet should include a small amount of unsaturated fats and limited amounts of saturated and, where possible, no trans-fat. Fats from olive oil, fish, and nuts are particularly healthy. Choosing the right amount and types of fats can help you achieve and maintain a healthy body weight. 
  • Reduce your sugar intake: Sugar has little nutritional value. Limit or avoid adding sugar to drinks and food. Although artificial sweeteners contain fewer calories, it is best just to get used to food being less sweet. Use fruit to sweeten cereals since they provide vitamins, minerals and fibre. 
  • Eat more vegetables and fruit: Vegetables and fruit should make up the largest component of your diet. Keep in mind that the sweetest fruits have high sugar content so best not to overdo these (for example apples). Try to have at least one vegetable at every meal and snack. This will boost your fibre intake, which helps with weight management. Many vegetables and fruits are also loaded with antioxidants, which are a useful part of a healthy diet. 
In addition to a healthy overall diet, fatty acids have been shown to reduce inflammation: 
  • Omega-3 polyunsaturated fatty acids, which are found in cold water fish (such as salmon and trout) and the oil produced from them, can be helpful for treatment of inflammatory arthritis. However, be aware that omega-3 fatty acids can interact with medication you may be taking. It is best to consult your doctor and pharmacist before taking omega-3 supplements. 
  • Omega-6 fatty acid, which is found in the oil from seeds of several plants including evening primrose, borage and black currant, may be helpful to reduce symptoms of SLE. One study suggested that flax seed oil could help improve SLE kidney disease. However, there is no evidence as to whether these fatty acids actually reduce long-term outcomes in SLE. 

Complementary therapies  

People with a chronic disease like SLE may decide to try complementary and alternative therapies to help them manage the symptoms of their condition. Complementary and alternative therapies are treatments that fall outside the scope of traditional North American medicine. Examples include naturopathic medicine, acupuncture and meditation. 

Before trying any of these treatments, inform your health-care provider of any complementary and alternative therapies you are taking, receiving or would like to try. Your health-care provider can offer valuable advice about these treatments, especially how they may affect other medications and treatments. 

Note: These therapies should not be substituted for western medicine, but could be complementary. 

Massage 

Massaging of muscles and other soft tissues, by a professional massage therapist, may lead to a decrease in stiffness and pain. Other benefits may include a reduction in stress and anxiety as well as improved mobility and overall function of the joints.   

Meditation 

Meditation is a mind-body practice intended to quiet the mind by focusing on your breathing. Some studies have found that meditation, if practiced regularly, can ease pain and anxiety in individuals with SLE. It can also offer people a heightened sense of calmness and control. 

Acupuncture 

Acupuncture, an ancient Chinese therapy, involves pricking the skin or tissues with needles to alleviate pain and treat various physical and mental health conditions. There is some research showing that acupuncture can relieve pain and, in turn, may reduce stress. If you are interested in trying it, it is important to find a certified practitioner.  

Living well with arthritis

There is a lot you can do to take control and actively manage your arthritis. Below we have listed a few resources to help you learn more about actively managing your arthritis to live better.

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Contributors

This information was last updated September 2017, with expert advice from:

Sasha Bernatsky MD, PhD, FRCPC
Professor, Department of Medicine, McGill University

Deborah Levy MD, MS, FRCPC
Pediatric Rheumatologist, Hospital for Sick Children
Associate Professor of Pediatrics, University of Toronto

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