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

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.

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.

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.

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?

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 .