Autoimmune Disease: The Mystery of Lupus

Imagine trying to deal with a disease that can strike at any age and attack almost any part of the body. There’s no cure, no known way to prevent it and patients and doctors alike struggle to understand it.

That’s the reality facing 5 million people worldwide and the 1 in 1000 Canadians who suffer from lupus. This autoimmune disease causes the body’s infection-fighting defences to attack healthy tissue. The most common and severe type — systemic lupus erythematosus (commonly referred to as SLE or just “lupus”) — doesn’t limit itself to joints and muscles. It can affect any of the body’s tissues like the skin, blood vessels and the nervous system.

Lupus can also attack major organs and the tissues surrounding them and potentially lead to problems with the heart, lungs, kidneys and even the brain. Inflammation in these organs can lead to potentially fatal complications including kidney failure, and new research suggests that lupus can also increase the risk of heart disease and stroke.

Sound scary? Remember, we’ve come a long way in recent decades. Fifty years ago the prognosis was bleak for many patients: nearly half of newly diagnosed people died within four years. Today, lupus is rarely fatal thanks in part to earlier diagnosis and better treatment options. In fact, experts note that most patients with lupus live a normal lifespan.


What causes lupus?

Experts don’t know enough about the immune system to determine what exactly causes lupus. As with other autoimmune disorders, current thinking is that many factors contribute to this condition, such as:

Genetics. Scientists haven’t found a gene or set of genes that is responsible, but some people with lupus also have a family member who has lupus or another autoimmune condition. (Autoimmune diseases tend to “cluster” in families — see Autoimmune diseases: A primer for more information.)

In addition, certain ethnic groups have higher rates of incidence than Caucasians — such as people of Asian or African descent and Aboriginal peoples.

Hormones. Women are eight to ten times more likely to have lupus than men, and the disease often shows up during their reproductive years (ages 15-45). Pregnancy can trigger the disease or cause a flare-up.

Environmental factors. Outside factors can also play a role in triggering the disease, like infections, certain medications, sun exposure and prolonged or severe stress. There isn’t enough research to point the finger at diet or pollution yet.


How can you recognize lupus?

It’s known as the disease “with a thousand faces” and the “great imitator” for good reason. Because lupus can affect any tissue or organ, different people experience different sets of symptoms. These symptoms can come and go and range from mild to severe. Patients may experience:

– Muscle or joint pain and swelling.

– Dry eyes and mouth.

– Anemia.

– Fever (could be a persistent, low-grade fever).

– Fatigue.

– Chest pain and/or shortness of breath.

– Hair loss.

– Unexplained weight loss or gain.

– Sores in the mouth or nose.

– Skin rash or lesions. The malar rash — a butterfly-shaped rash covering the nose and cheeks — is a common sign of lupus.

– Fingers turning white or blue when cold (Raynaud’s phenomenon).

– Swelling around the eyes or in the extremities (such as the feet, legs and hands).

– Sensitivity to sunlight.

– Seizures or psychological symptoms like confusion, memory loss and difficulty concentrating.

– Anxiety or depression.

Because these warning signs are also the symptoms of a host of other conditions, lupus can often be difficult diagnose. There’s also no single test to detect lupus. It may take a series of blood tests, urine tests and x-rays to identify the problem. Most doctors rely on the American College of Rheumatology’s classification criteria — which includes test results and common symptoms — to help make a clinical diagnosis.


How is it treated?

Lupus can’t be cured, so the focus is on managing persistent symptoms and preventing flare-ups. Flare-ups last from a couple of weeks to several months and can lead to serious complications including organ damage that accumulates over time. Ultimately, the goal of treatment is improving quality of life.

Not surprisingly, medications are part of the treatment plan and which ones are used (and how) depends on the person. Non-steroidal anti-inflammatory drugs (NSAIDS) and anti-malarial medications can help treat the “mild” symptoms like rash, hair loss, chest pain and joint inflammation. When the organs become involved, doctors may bring in immune-suppressing drugs or corticosteroids to target the disease itself.

In addition, medications may be needed to treat the side effects of prescribed treatments such as weight gain and anemia.

Lifestyle choices also play a big role. For people living with lupus, experts recommend these strategies:

Pace yourself. Experts warn that fatigue is one symptom that may never completely go away, even when the disease isn’t flaring up. It’s important to get plenty of rest along with moderate activity.

Exercise. As with other forms of arthritis, exercise can help maintain range of motion, endurance and strength as well as preventing flare-ups.

Eat well. The links between diet and lupus are unclear, but experts warn that a poor diet can trigger a flare-up and fad diets can be dangerous.

Stay safe in the sun. Avoiding peak sunshine hours, wearing sunscreen and donning protective clothing can help prevent the rash that one third of lupus patients experience when they’re out in the sun.

Manage stress. Stress affects the immune system and can exacerbate many health issues, so it’s important to keep it in check with relaxation techniques, hobbies, exercise and time spent with family and friends.

Use the right tools. Ergonomic tools and furniture or assistive devices can help make daily activities easier and keep people active. For instance, a properly set-up workstation can help avoid undue stress on the joints, and the right kitchen tools can make it easier for someone experiencing joint pain to manage cooking.


What can you do?

There’s still much left for doctors to learn about lupus, but friends, family and coworkers can help. If you know someone who is affected by lupus, one of the best things you can do is learn more about the disease and offer moral support. People who suffer from lupus often experience depression, anxiety and feelings of helplessness due to the chronic pain and fatigue. The disease can be difficult to talk about and hard for others to understand.

For more information about lupus, visit:

Lupus Canada
Lupus Foundation of America Lupus

If you’re interested in fundraising and awareness, many organizations hold events each May. See World Lupus Day for more information.

Additional sources: Statistics Canada: Musculoskeletal diseases, National Institutes of Arthritis and Musculoskeletal and Skin Diseases, Johns Hopkins Health Alerts.