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Living with Lupus

Learning How to Effectively Treat and Manage Lupus Is Vital

Dr. Konstantinos Tselios

Assistant Professor of Medicine, McMaster University

Understanding how to manage lupus and prevent flares is essential information for the roughly 37,000 Canadians currently living with the disease.

Lupus is a chronic, lifelong autoimmune disease in which the immune system, which normally protects the body against bacteria, viruses, and other intruders, is misdirected and activated against several components of the body — effectively attacking itself. This leads to inflammation and tissue damage in various organs, causing a range of symptoms and long-term effects, especially when it’s not managed properly.


Lupus affects roughly one in 1,000 people worldwide, which amounts to approximately 37,000 patients in Canada. For these Canadians and their loved ones —along with people who suspect they may have the disease — knowledge is power.

Understanding lupus

“The cause of lupus (and all autoimmune diseases) is currently unknown,” says Dr. Konstantinos Tselios, Assistant Professor of Medicine at McMaster University and a leader at the McMaster Lupus Clinic, where he established the Lupus Clinic Registry and Biobank. “The prevailing theory is that lupus develops in a genetically predisposed individual (carrying genes from their parents that may affect the normal function of the immune system) upon the impact of environmental factors such as ultraviolet radiation, bacteria, viruses, chemicals, drugs, and so on.”

Lupus affects people of all ages, but is more prevalent in ethnic minorities (including African Canadians, Hispanic Canadians, and First Nations) and typically affects young women. “Approximately 90 per cent of lupus patients are women and most of them are diagnosed between 20 and 40 years of age,” says Dr. Tselios. “However, lupus can also affect newborns and children.”

Widespread impact

Lupus’ impact is widespread. “Lupus can affect practically any organ or system of the human body,” says Dr. Tselios. “The most common manifestations include joint inflammation (arthritis) and skin involvement (various rashes including the typical ‘butterfly’ rash). Other organs that are often affected are the kidneys, heart, lungs, brain, and blood cells.”

Lupus can affect practically any organ or system of the human body.

In addition, lupus causes constitutional symptoms such as fever, fatigue, and low energy. Because the disease manifests differently in different patients, it’s known as the disease with 1,000 faces. “No two lupus patients are exactly the same,” notes Dr. Tselios. “This makes it difficult for doctors to make the correct diagnosis quickly. It commonly takes four to five years for many lupus patients to receive a proper diagnosis and start treatment.”

Lupus is characterized by relapses — periods of active disease with many symptoms — and remissions — periods of no or minimal symptoms. The relapses (or “flares”) are often unpredictable. “Patients may feel tired, have more joint pain, develop rashes on their face or elsewhere, experience hair loss, or develop ulcers in their mouth or nose,” says Dr. Tselios. “Others may develop chest pains or shortness of breath, headaches, or other neurological symptoms.”

Preventing flares  

Over 90 per cent of lupus patients will experience a flare in the next 12 months, so understanding how to prevent them is essential. Lupus patients can protect themselves by avoiding triggers.

“Prolonged sun exposure, particularly without sunscreen or other protection, is a well-recognized triggering factor,” says Dr. Tselios. “Infections may also trigger the immune system and aggravate disease symptoms. Also, poor compliance (discontinuing the drugs that are prescribed to control disease activity against medical advice) often leads to flares.”

Preventing flares also helps to reduce the long-term effects of the disease, which include organ damage, osteoporosis, osteonecrosis, high blood pressure, diabetes, increased risk for certain cancers, pregnancy complications, and more. “One of the most important complications is atherosclerosis — the stiffening of the arteries that can cause heart attacks and strokes,” says Dr. Tselios. “In patients with lupus, these complications are more frequent and appear at a substantially younger age than in non-lupus populations.” Another complication of lupus is lupus nephritis (LN) which is characterized by immune system induced inflammation of the kidneys.

Adopting a healthy lifestyle

In addition to avoiding known flare triggers, patients with lupus should have regular visits with the treating physician to help better manage the disease. “Lupus patients should be monitored closely by their physicians for symptoms and signs of active disease,” says Dr. Tselios. “Regular blood and urine tests are required for such monitoring. Treatment modifications should be guided by their physicians, as non-compliance is the most important factor for adverse outcomes.”  Lupus can cause devastating complications. Earlier treatment and close collaboration between specialists may lead to the best patient outcomes. For example, as lupus is a multi-organ disease, a collaborative multidisciplinary team approach is encouraged. This can minimize potential gaps in doctor-patient communication and help better educate and therefore empower patients to take the right decisions to manage their condition.

A healthy lifestyle can also go a long way. “A balanced diet is of paramount importance,” says Dr. Tselios. “Although no particular diet has been shown to help improve disease activity or prevent long-term complications, less salt and sugar intake is usually recommended. Fruit and vegetables are encouraged whereas processed foods and saturated fats should be minimized. Some minerals and vitamins (such as calcium and vitamin D) are also helpful in maintaining bone health and preventing osteoporosis. Regular exercise helps maintain a healthy body weight and control other co-morbidities, like high blood pressure and diabetes.” Awareness and education are critical, and Dr. Tselios encourages patients to take advantage of the available resources, including from Lupus Canada and Lupus Ontario.

If you or a loved one is living with lupus, talk to your doctor to learn about how best to manage the disease. Visit for more info.

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