get healthing in your inbox with the morning checkup and weekender newsletter!

lupus

doctor’s orders: lupus puts people at higher risk of organ damage, depression and cognitive impairment

despite the challenges of treating lupus, dr. zahi touma is hopeful for the futures of people living with the complex autoimmune condition.

by karen hawthorne

published jun 08, 2023

last updated jun 13, 2023

7 minute read

join the conversation

7 minute read

join the conversation

40 per cent of people with lupus develop cognitive impairment

lupus is known as the "disease with a thousand faces" because it can affect any tissue or organ of the body. getty

lupus is a complex and chronic autoimmune disease that causes inflammation in any tissue or organ of your body. it can target your skin, muscles, joints, lungs, heart, kidneys, blood and blood vessels and the brain. the disease can be mild or severe, and often goes into remission for long periods of time. the most common form is sle, systemic lupus erythematosus, with up to 50 per cent of patients facing organ damage within the first five years of diagnosis. according to lupus canada, lupus doesn’t discriminate. anyone can get it, including women, men and children, with women between age 15 and 45 the most likely to be diagnosed. estimates suggest that it affects more than one in every 1,000 canadians, so it’s not considered a rare condition, although it’s often misunderstood. lupus is not an infection that can pass from person to person. it’s not related to aids or cancer, and it belongs in the family of diseases that includes multiple sclerosis, juvenile diabetes and rheumatoid arthritis.

healthing spoke with dr. zahi touma, a rheumatologist and clinical epidemiologist with the university health network in toronto, and a professor and scientist at the university of toronto. his research is focused on patients with sle and measurement science for assessing disease activity, patient-reported outcomes and cognitive function.

what is lupus?

dr. touma: lupus is an autoimmune disease where your immune system attacks your own organs. and we have different organs in our body. for instance, the skin, it’s an organ. if it goes to the skin, it gives you skin rash and hair loss. it can go to your heart, to your kidney. your immune system is supposed to prevent you from infection — from viruses and so on. but with the lupus patient, it’s not working well, so it recognizes your internal organ as something new to your body and attacks the organ. we call it ‘the disease of a thousand faces.’ every time you see a patient, you’ve got to think carefully and try to figure out which face of the disease you’re seeing today.

what are the signs of lupus?

dr. t.: the first thing patients report is a lot of fatigue, even before they start seeing other symptoms. then there’s skin involvement in almost in 70 per cent of patients, such as a rash over any part of your body, particularly areas that are exposed to the sun — the face, the skull, the upper shoulders, the chest. they can also get a rash on the cheeks that looks like a butterfly.

you can also get a lot of arthritis — we see this in up to 60 per cent or more of patients. it affects the small to medium joints, which means the wrists, knuckles, toes, ankles, knees, with swelling and pain. it can affect muscles and cause weakness, making it difficult to walk or climb stairs.

lupus can also affect your internal organs, and that’s the difficult part of it. up to 55 per cent of patients during their lifetime get what we call, lupus nephritis or inflammation of the kidney. and if you don’t treat it, unfortunately, it leads to end-stage kidney disease where the patient has to go on dialysis and get a kidney transplant.

it can also go to the brain, affecting your mood, causing hallucinations, psychosis, stroke or severe headaches. really, the manifestations with lupus are varied and depend on which organ that’s involved.

the majority of lupus patients have what we call “wax and waning disease.” less than nine per cent of patients are lucky in a way that they get hit by the disease for five years, and then for some reason it leaves them alone for a long period. i wish the majority of cases were like this.

what are the risk factors of lupus?

dr. t.: in general, lupus is most commonly seen in women and typically starts between the ages of 13 and 14 to 45 or 50. we see a lot of lupus around puberty, and there is also late-onset lupus, which happens after the age of 50. i would say genetics is always very important. but the tricky part about lupus is that it’s not explained simply by genetics. there’s a higher risk if you have someone in the family who has an autoimmune disease such as lupus, and it doesn’t have to be the parents.

there is also seems to be an environmental connection. we know that certain factors, if you are predisposed to lupus, might lead to its development. there’s a lot of information that links lupus to significant sun exposure, or severe infection or stress in life. in some people, both genetic and environmental factors might cause someone to develop lupus, but when, how, and who will get it? nobody knows.

there have been very interesting studies that have looked retrospectively at the blood work of people five and 10 years before being diagnosed with lupus and there are certain antibodies in their blood that other people don’t have. and then closer to the time of diagnosis, they begin developing different antibodies that are very specific for lupus. so something’s happening in the immune system years before someone develops lupus.

dr. zahi touma is a rheumatologist and clinical epidemiologist with the university health network in toronto, and a professor and scientist at the university of toronto. supplied

what can be done to prevent lupus?

dr. t.: no one knows actually what can we do to avoid the development of lupus. but once you have lupus, there are things that you have to modify to make sure you don’t get into trouble. we recommend patients avoid sun exposure because it can trigger disease activity — even it is in the dormant phase. so any time you’re outside, if it’s sunny or not, we recommend to cover up with long sleeves and a hat and use good sun protection.

for some people, significant stress can exacerbate their disease. there are many studies showing that lupus patients develop anxiety and depression. the majority of people who are diagnosed are young people, full of activity and life. they come to the clinic and they leave with an immunosuppressant and three, four, maybe six medications. their immune system is on fire, and their internal organs and skin, everything is active. studies have shown that when patients are diagnosed, their quality of life significantly drops — even lower than what we see in people with cancer. some of them develop coping strategies and are able to manage symptoms and then their quality of life improves, but it will never reach what’s considered a normal level. it’s important for us to work together with the health-care team — the social worker, the nurse, the doctor — educating them on the disease.

how is lupus treated?

dr. t.: every patient should be on a group of medications known as antimalarials as soon as they are diagnosed — and they should on this medication throughout their life. the main medication that we have right now for lupus is steroids, particularly prednisone. it works very fast, especially when the kidneys or brain is affected and you need something to control the disease right away. the problem is that prednisone is associated with adverse effects down the road. it can cause early cataracts, it can destruct the major joints in your body, particularly hips and knees and lead to joint replacement. so imagine a young lady at the age of 20, 25 or 30, who has to replace both hips and that replaced hip only lasts about 15 years. how many times is she going to have a hip replacement?

there is also a group of immunosuppressants for lupus patients, but they are associated with significant adverse events. some can make you lose hair, or cause early gonadal failure [of reproductive organs]. patients may also need vitamin d and a cholesterol pill — it goes on and on.

lupus sounds like a difficult condition to treat.

dr. t: i think we have to understand what people with lupus go through. more than 40 per cent develop early cognitive impairment — every other patient coming to the clinic will say that they are having problems with short-term memory. in my research, we are working on finding a new biomarker that can help us tell when the brain is dealing with inflammation from lupus and how to measure it. we want to prevent the problem instead of deal with the problem when it happens.

what’s one piece of advice for someone with lupus?

dr. t.: i want to give them hope — i’m seeing patients in our clinic at the age of 80 and beyond. lupus patients can get pregnant and have a family. as long as you work very closely with your health-care team, are on top of the medication and learn about your disease, it’s much easier to manage.

for more information about lupus, visit lupus ontario and

lupus canada.

karen hawthorne is a toronto-based writer.

don’t miss a thing: sign-up for healthing’s newsletter

thank you for your support. if you liked this story, please send it to a friend. every share counts.

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

doctor’s orders: lupus puts people at higher risk of organ damage, depression and cognitive impairment

despite the challenges of treating lupus, dr. zahi touma is hopeful for the futures of people living with the complex autoimmune condition.

life without lupus is the goal of lupus canada