About Lupus (systemic lupus erythematosus or “SLE”)
About lupus
Lupus is a complex, chronic autoimmune disease that can affect nearly every part of the body and every part of a person’s life. It can influence physical health, mental wellbeing, family roles, employment, and long-term quality of life.
For many people, lupus is an invisible illness. You may look well on the outside while managing fatigue, pain, and uncertainty that others cannot see.
Lupus affects every part of a person’s life. The unpredictability of the disease can make it difficult to plan ahead, maintain routines, participate fully in work, school, or relationships.
Although advances in treatment have improved outcomes for many people, lupus remains difficult to diagnose, challenging to manage, and associated with serious complications.
What is lupus
Lupus is the common name for a group of autoimmune diseases in which the immune system mistakenly attacks the body’s own healthy tissues, causing inflammation, tissue damage, and pain. Lupus often occurs in cycles of flares, when symptoms worsen, and periods of lower disease activity. The most common form is systemic lupus erythematosus (SLE). SLE can affect:
Approximately 1 in 1,000 people live with lupus in Canada. An estimated 15,000 Canadians are affected by SLE alone.
What are the main symptoms?
Every lupus patient is different. Because lupus can affect many parts of the body, it presents differently from person to person. Some people experience mild disease. Others develop serious organ involvement.
Medical evaluation is important if three or more of the following warning signs are present:
Fatigue: more than just being tired
Fatigue is one of the most common and disabling symptoms of lupus. It is not simply feeling tired after a busy day. Lupus fatigue can be overwhelming, persistent and unpredictable. It may occur even when blood tests appear stable. Fatigue can affect every aspect of life, including work, parenting, exercise, and basic daily tasks. Because it is invisible, fatigue is often misunderstood by others.
What is a lupus flare?
A flare occurs when lupus symptoms suddenly worsen. Flares can be triggered by infections, stress, sun exposure, or stopping medications, but sometimes occur without a clear cause. Flares may involve fatigue, joint pain, rash, fever, or organ inflammation. They can last days or months.
Who is affected?
Lupus can affect anyone. However, it disproportionately affects:
Research in Canada shows that lupus is more common and often more severe in Indigenous and other racialized communities.3 For example, Indigenous females over the age of 45 have been found to have significantly higher prevalence and greater disease activity compared to non-Indigenous females. These disparities are closely linked to systemic barriers and inequities to care, and social determinants of health.
What causes lupus?
The exact cause of lupus remains unknown. Scientists believe it results from possible combinations of genetic, hormone, and environmental factors.
Possible triggers include:
Getting a diagnosis
Lupus is difficult to diagnose and has a range of symptoms. It can also mimic other diseases.
People with lupus often have to see multiple doctors or specialists before they are formally diagnosed. Studies report that patients may make 7-10 medical visits before seeing a rheumatologist who can diagnose lupus. Rheumatologists are specialists in autoimmune and inflammatory diseases and are trained to recognize patterns that distinguish lupus from other diseases.
There is no single test for lupus. Diagnosis is based on a combination of medical history, a comprehensive physical exam because lupus can affect any part of the body, followed by blood tests, urine tests, biopsies, X-rays, and CT scans. Once the results come back, a rheumatologist can review them and make a diagnosis.
Why early diagnosis matters
Early diagnosis is critically important. Complications that result from untreated lupus, which often occur due to a delay in diagnosis or because of how difficult lupus is to treat, can include rashes and scarring, joint damage as well as complications of the heart, lungs, kidneys and brain, which can be very serious. In the past, before effective treatments, many people with lupus died from the disease. When the disease is not well-controlled, there is an increased risk of infection, heart attacks, strokes and certain cancers.
Health effects and complications
Lupus can range from mild to life-threatening. Its effects vary widely from person to person. Common complications include:
Lupus also increases the risk of premature atherosclerosis (early hardening of the arteries) and cardiovascular disease. Managing blood pressure, monitoring cholesterol, maintaining physical activity, and avoiding smoking are important parts of long-term lupus care.
Lupus nephritis: a serious complication
Kidney involvement occurs in up to 60 percent of adults and two-thirds of children with lupus. Lupus nephritis is one of the most serious complications of the disease.
Early kidney damage may not cause noticeable symptoms. This is why regular urine testing and blood monitoring are essential. When detected early, treatment can reduce the risk of long-term damage. In more severe cases, aggressive treatment with immunosuppressive therapy may be necessary to protect kidney function.
If not adequately controlled, lupus nephritis can lead to kidney failure requiring dialysis or kidney transplantation. Because of this risk, kidney monitoring is a central part of lupus care.
What lupus research tells us
Research highlights the seriousness of lupus and the need for improved management.
Researchers at Arthritis Research Canada (ARC) have found that the risk of premature death among people with SLE has not improved in recent years. Compared with the general population, individuals with SLE continue to experience significantly higher mortality rates.4
When lupus is not well controlled, chronic inflammation, immune system dysfunction and medication effects increase the risk of:
A second ARC study found one in five people living with SLE develop severe infections with 21 per cent of those infections causing death. This is the first study to evaluate the risk of severe infections in a large group of SLE patients from the general population.5 These are important findings because they show that infections are one of the leading causes of premature death in people living with lupus.
Modern treatment goals: treat to target
Lupus care has evolved significantly. Today, many specialists follow a treat-to-target approach. This means aiming for:
Lupus care and treatment
There is currently no cure for lupus. Treatment is personalized and may involve:
Hydroxychloroquine is considered foundational therapy for most people with lupus. In moderate to severe cases, combination therapy may be required.
An important part of modern management is reducing cumulative steroid exposure. While corticosteroids such as prednisone are effective in controlling inflammation, long-term use increases the risk of infections, bone loss, diabetes, cardiovascular disease, and permanent organ damage. Specialists now aim to use the lowest possible steroid dose for the shortest time necessary and ideally eliminate chronic steroid use when possible.6
International recommendations from the European League of Associations of Rheumatology7,8 and the American College of Rheumatology9 also emphasize comprehensive, interprofessional care in addition to medication.
Pregnancy and family planning
Because lupus often affects women in their reproductive years, pregnancy planning is an important part of care.
Most people with lupus can have successful pregnancies. Outcomes are best when the disease is stable for several months before conception. Certain medications must be adjusted or stopped prior to pregnancy, while others are considered safe to continue.10
Pre-pregnancy counseling with a rheumatologist and, when appropriate, a high-risk obstetric specialist is strongly recommended. Careful planning can significantly reduce risks for both parent and baby.
Mental health and emotional wellbeing
Depression and anxiety are common among people living with lupus. Mental health challenges may stem from the biological effects of inflammation, the impact of medications, or the lived experience of managing a chronic disease, including fear of flares or organ damage.
Support from mental health professionals, peer support, and community connection can make a meaningful difference.
Living well with lupus
Many lupus symptoms can be very debilitating and/or painful. Some people describe planning their day in hours, not weeks, because they cannot predict how they will feel tomorrow. While lupus can be unpredictable, there are many ways to take control of your health and improve your quality of life. Learning how to pace activities and listen to your body are important ways to manage lupus. Helpful strategies include:
References
| ACE is committed to using inclusive language that is free from words, phrases and tone that reflect discriminatory or stereotyped views of underrepresented people or groups. In our attempt to avoid bias or using language that appropriates other cultures as it relates to Indigenous Peoples health and wellness, ACE consults with Indigenous advisors to ensure its website and other written materials use terms and expressions that align with Indigenous identities and are culturally appropriate. |
Lupus is a complex, chronic autoimmune disease that can affect nearly every part of the body and every part of a person’s life. It can influence physical health, mental wellbeing, family roles, employment, and long-term quality of life.
For many people, lupus is an invisible illness. You may look well on the outside while managing fatigue, pain, and uncertainty that others cannot see.
Lupus affects every part of a person’s life. The unpredictability of the disease can make it difficult to plan ahead, maintain routines, participate fully in work, school, or relationships.
Although advances in treatment have improved outcomes for many people, lupus remains difficult to diagnose, challenging to manage, and associated with serious complications.
What is lupus
Lupus is the common name for a group of autoimmune diseases in which the immune system mistakenly attacks the body’s own healthy tissues, causing inflammation, tissue damage, and pain. Lupus often occurs in cycles of flares, when symptoms worsen, and periods of lower disease activity. The most common form is systemic lupus erythematosus (SLE). SLE can affect:
- Joints
- Skin
- Muscles
- Kidneys
- Lungs
- Heart
- Blood vessels
- Blood cells
- Brain and nervous system
Approximately 1 in 1,000 people live with lupus in Canada. An estimated 15,000 Canadians are affected by SLE alone.
What are the main symptoms?
Every lupus patient is different. Because lupus can affect many parts of the body, it presents differently from person to person. Some people experience mild disease. Others develop serious organ involvement.
Medical evaluation is important if three or more of the following warning signs are present:
- Persistent fatigue or low energy
- Skin rash, especially after sun exposure
- Swollen, stiff, and painful joints
- Fever
- Loss of appetite or unexplained weight loss
- Painless ulcers in the mouth or nose
- Chest pain when lying down or taking deep breaths
- Low blood counts, including anemia
Fatigue: more than just being tired
Fatigue is one of the most common and disabling symptoms of lupus. It is not simply feeling tired after a busy day. Lupus fatigue can be overwhelming, persistent and unpredictable. It may occur even when blood tests appear stable. Fatigue can affect every aspect of life, including work, parenting, exercise, and basic daily tasks. Because it is invisible, fatigue is often misunderstood by others.
What is a lupus flare?
A flare occurs when lupus symptoms suddenly worsen. Flares can be triggered by infections, stress, sun exposure, or stopping medications, but sometimes occur without a clear cause. Flares may involve fatigue, joint pain, rash, fever, or organ inflammation. They can last days or months.
Who is affected?
Lupus can affect anyone. However, it disproportionately affects:
- Individuals between the ages of 15 and 45
- Women, who represent about 90 percent of people living with lupus
- Indigenous, Black, and other racialized populations1,2
Research in Canada shows that lupus is more common and often more severe in Indigenous and other racialized communities.3 For example, Indigenous females over the age of 45 have been found to have significantly higher prevalence and greater disease activity compared to non-Indigenous females. These disparities are closely linked to systemic barriers and inequities to care, and social determinants of health.
What causes lupus?
The exact cause of lupus remains unknown. Scientists believe it results from possible combinations of genetic, hormone, and environmental factors.
Possible triggers include:
- Hormonal influences
- Genetic susceptibility
- Certain medications
- Viruses and bacterial infections
- Extended or severe stress
- Pregnancy
- Exposure to ultraviolet light
Getting a diagnosis
Lupus is difficult to diagnose and has a range of symptoms. It can also mimic other diseases.
People with lupus often have to see multiple doctors or specialists before they are formally diagnosed. Studies report that patients may make 7-10 medical visits before seeing a rheumatologist who can diagnose lupus. Rheumatologists are specialists in autoimmune and inflammatory diseases and are trained to recognize patterns that distinguish lupus from other diseases.
There is no single test for lupus. Diagnosis is based on a combination of medical history, a comprehensive physical exam because lupus can affect any part of the body, followed by blood tests, urine tests, biopsies, X-rays, and CT scans. Once the results come back, a rheumatologist can review them and make a diagnosis.
Why early diagnosis matters
Early diagnosis is critically important. Complications that result from untreated lupus, which often occur due to a delay in diagnosis or because of how difficult lupus is to treat, can include rashes and scarring, joint damage as well as complications of the heart, lungs, kidneys and brain, which can be very serious. In the past, before effective treatments, many people with lupus died from the disease. When the disease is not well-controlled, there is an increased risk of infection, heart attacks, strokes and certain cancers.
Health effects and complications
Lupus can range from mild to life-threatening. Its effects vary widely from person to person. Common complications include:
- Kidney inflammation (lupus nephritis)
- Raynaud’s phenomenon
- Sjögren’s syndrome
- Swelling in the feet and hands
- Hair loss
- Blood abnormalities
- Cognitive difficulties
Lupus also increases the risk of premature atherosclerosis (early hardening of the arteries) and cardiovascular disease. Managing blood pressure, monitoring cholesterol, maintaining physical activity, and avoiding smoking are important parts of long-term lupus care.
Lupus nephritis: a serious complication
Kidney involvement occurs in up to 60 percent of adults and two-thirds of children with lupus. Lupus nephritis is one of the most serious complications of the disease.
Early kidney damage may not cause noticeable symptoms. This is why regular urine testing and blood monitoring are essential. When detected early, treatment can reduce the risk of long-term damage. In more severe cases, aggressive treatment with immunosuppressive therapy may be necessary to protect kidney function.
If not adequately controlled, lupus nephritis can lead to kidney failure requiring dialysis or kidney transplantation. Because of this risk, kidney monitoring is a central part of lupus care.
What lupus research tells us
Research highlights the seriousness of lupus and the need for improved management.
Researchers at Arthritis Research Canada (ARC) have found that the risk of premature death among people with SLE has not improved in recent years. Compared with the general population, individuals with SLE continue to experience significantly higher mortality rates.4
When lupus is not well controlled, chronic inflammation, immune system dysfunction and medication effects increase the risk of:
- Kidney disease
- Cardiovascular disease
- Severe infections
A second ARC study found one in five people living with SLE develop severe infections with 21 per cent of those infections causing death. This is the first study to evaluate the risk of severe infections in a large group of SLE patients from the general population.5 These are important findings because they show that infections are one of the leading causes of premature death in people living with lupus.
Modern treatment goals: treat to target
Lupus care has evolved significantly. Today, many specialists follow a treat-to-target approach. This means aiming for:
- Remission, where there is no evidence of active disease
- Low disease activity, where symptoms and inflammation are minimized and stable
Lupus care and treatment
There is currently no cure for lupus. Treatment is personalized and may involve:
- Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, naproxen, and diclofenac
- Antimalarials such as hydroxychloroquine
- Methotrexate
- Corticosteroids such as prednisone
- Immunosuppressive medications such as cyclophosphamide, azathioprine, and mycophenolate mofetil
- Biologic therapies, including anifrolumab and belimumab.
Hydroxychloroquine is considered foundational therapy for most people with lupus. In moderate to severe cases, combination therapy may be required.
An important part of modern management is reducing cumulative steroid exposure. While corticosteroids such as prednisone are effective in controlling inflammation, long-term use increases the risk of infections, bone loss, diabetes, cardiovascular disease, and permanent organ damage. Specialists now aim to use the lowest possible steroid dose for the shortest time necessary and ideally eliminate chronic steroid use when possible.6
International recommendations from the European League of Associations of Rheumatology7,8 and the American College of Rheumatology9 also emphasize comprehensive, interprofessional care in addition to medication.
Pregnancy and family planning
Because lupus often affects women in their reproductive years, pregnancy planning is an important part of care.
Most people with lupus can have successful pregnancies. Outcomes are best when the disease is stable for several months before conception. Certain medications must be adjusted or stopped prior to pregnancy, while others are considered safe to continue.10
Pre-pregnancy counseling with a rheumatologist and, when appropriate, a high-risk obstetric specialist is strongly recommended. Careful planning can significantly reduce risks for both parent and baby.
Mental health and emotional wellbeing
Depression and anxiety are common among people living with lupus. Mental health challenges may stem from the biological effects of inflammation, the impact of medications, or the lived experience of managing a chronic disease, including fear of flares or organ damage.
Support from mental health professionals, peer support, and community connection can make a meaningful difference.
Living well with lupus
Many lupus symptoms can be very debilitating and/or painful. Some people describe planning their day in hours, not weeks, because they cannot predict how they will feel tomorrow. While lupus can be unpredictable, there are many ways to take control of your health and improve your quality of life. Learning how to pace activities and listen to your body are important ways to manage lupus. Helpful strategies include:
- Recognizing early signs of flares
- Attending regular medical appointments
- Protecting against sun exposure by using SPF 30 or higher sunscreen and limiting ultraviolet exposure
- Eating a balanced diet
- Engaging in moderate physical activity when appropriate
- Prioritizing sleep and stress management
- Practicing relaxation techniques such as mindfulness or meditation
- Seeking mental health and peer support when needed
- Lupus is the common name for chronic autoimmune diseases that can affect multiple organs.
- Early diagnosis and specialist care are essential.
- Modern care aims for remission or low disease activity while minimizing steroid exposure.
- The most common type of lupus is systemic lupus erythematosus (SLE).
- Lupus nephritis is a serious complication that requires close monitoring.
- Pregnancy planning should be part of care for people of childbearing age.
- Fatigue and mental health impacts are real and deserve recognition.
- New therapies targeting specific immune pathways are being developed and are improving outcomes for many people living with lupus.
- With earlier diagnosis, better treatments, and growing awareness, more people with lupus are living longer and fuller lives than ever before.
References
| 1 | Izmirly PM, Parton H, Wang L, et al. Prevalence of systemic lupus erythematosus in the United States: estimates from a meta-analysis of the Centers for Disease Control and Prevention National Lupus Registries. Arthritis Rheumatol. 2021;73(6):991-996. doi:10.1002/art.41632 |
| 2 | Fatoye F, Gebrye T, Svenson LW. Real-world incidence and prevalence of systemic lupus erythematosus in Alberta, Canada. Rheumatol Int. 2018 Sep;38(9):1721-1726. doi: 10.1007/s00296-018-4091-4. Epub 2018 Jul 9. PMID: 29987494; PMCID: PMC6105153. |
| 3 | Hurd K, Barnabe C. Systematic review of rheumatic disease phenotypes and outcomes in the Indigenous populations of Canada, the USA, Australia and New Zealand. Rheumatol Int. 2017 Apr;37(4):503-521. doi: 10.1007/s00296-016-3623-z. Epub 2016 Dec 17. PMID: 27988789; PMCID: PMC5357284. |
| 4 | Moghaddam B, Marozoff S, Li L, Sayre EC, Aviña-Zubieta JA. All-cause and cause-specific mortality in systemic lupus erythematosus: a population-based study. Rheumatology (Oxford). 2021. DOI: 10.1093/rheumatology/keab362 |
| 5 | Zhao K, Xie H, Li L, Esdaile JM, Aviña-Zubieta JA. Increased risk of severe infections and mortality in patients with newly diagnosed systemic lupus erythematosus: a population-based study. Rheumatology (Oxford). 2021;60(11):5300-5309. https://doi.org/10.1093/rheumatology/keab219 |
| 6 | Sammaritano LR, et al. 2025 American College of Rheumatology Guideline for the Treatment of Systemic Lupus Erythematosus. Arthritis Care & Research. 2025. |
| 7 | Fanouriakis A, et al. 2023 update of the EULAR recommendations for the management of systemic lupus erythematosus. Annals of the Rheumatic Diseases. 2024. DOI: 10.1136/ard-2023-224762 |
| 8 | Parodis I, et al. EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus and systemic sclerosis. Annals of the Rheumatic Diseases. 2024;83(6):720-729. DOI: 10.1136/ard-2023-224416 |
| 9 | Sammaritano LR, et al. 2025 American College of Rheumatology Guideline for the Treatment of Systemic Lupus Erythematosus. Arthritis Care & Research. 2025. |
| 10 | Ibid., p. 472. |
Arthritis Consumer Experts
ACE thanks Arthritis Research Canada (ARC) for its scientific review of ACE and JointHealth™ information and education programs.