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#Episode 14

Lupus Under the Microscope

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Episode Description:

Lupus is a chronic condition that occurs when the immune system stops recognizing what is foreign – like a bacteria or virus – and starts attacking organs in the body. It causes widespread inflammation that can affect the heart, brain, kidneys, skin, and more – sometimes leading to irreversible damage.

Early diagnosis is essential to prevent organ damage. However, even in developed countries, there is often a delay of up to five years before someone is diagnosed. “This disease isn’t based on a single blood test or symptom, making it hard to diagnose,” said Dr. May Choi, a Research Scientist at Arthritis Research Canada. “Every lupus patient is different.”

Choi is spearheading research on lupus biomarkers, which are molecules found in the blood, muscles, or any fluid and tissue in the body. The goal is to identify biomarkers that are helpful in diagnosing lupus earlier and with more accuracy.

“If we can find a biomarker, or set of biomarkers, that allows us to diagnose lupus even before major symptoms develop, then we can start treatment early to prevent all the downstream complications,” Choi said.

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Episode Content:

In Episode 14 of the Arthritis Research Education Series, discover how Arthritis Research Canada’s scientists are working to understand how lupus develops in the body, find better treatments and drive research closer to a cure.

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Research

Content and Topic of Research

We’re conducting research to diagnose lupus earlier, identify new medications and push closer to a cure.

Lupus can cause serious, irreversible organ damage when inflammation is not controlled. For this reason, early diagnosis and treatment is extremely important.

“A lot of patients come into our clinic in the very late stages of lupus when the disease has already spread to multiple organs,” said Dr. May Choi, a Rheumatologist and Research Scientist at Arthritis Research Canada. “We still don’t know what causes lupus, but If we understand the mechanism by which it happens – the pathways that are involved – we can find treatments that can act specifically to stop those pathways from occurring.”

Dr. Choi runs a unique lab that discovers and tests new biomarkers. She hopes that her research will lead to an earlier and more accurate diagnosis of lupus and stop people from progressing to the later stages.

Expand the menus below and click the links to learn more about some of this critical lupus research.

Biomarkers Research

Research Scientist

Dr. May Choi, MD FRCPC, MPH

Research Scientist – Rheumatology, Arthritis Research Canada

Dr. May Choi is a recent graduate of the Cumming School of Medicine’s Adult Rheumatology training program. She’s also the Associate Director of MitogenDx and the Associate Director of Research at the University of Calgary’s Lupus Centre of Excellence. Dr. Choi completed her Bachelor of Health Sciences (Honours) degree at the University of Calgary in 2010, her Doctor of Medicine at the University of Alberta in 2014 and Internal Medicine training at the University of Calgary in 2017. In 2021, she completed her Masters of Public Health in Epidemiology Program at Harvard University and the Brigham and Women’s Hospital Lupus Fellowship under the supervision of Dr. Karen Costenbader.

Her recent publications and current research interests are focused on biomarker discovery and validation for the prediction of clinical outcomes in early onset lupus, as well as systemic lupus erythematosus (SLE) epidemiology.

Additional Resources

Lupus is a chronic disease that can happen in any part of the body, including the heart, brain, kidneys, skin and more.

People with lupus can experience a butterfly rash on their face, kidney problems and even brain involvement such as seizures, psychosis, and hallucinations. These differences make diagnosing lupus challenging and, living with it, different for everyone.

We’ve put together FAQs, helpful videos, articles and links on a variety of lupus-related topics, so you can pick and choose what works for you.

Frequently Asked Questions

How is someone diagnosed with lupus?

Typically, patients visit their doctor because they are already showing signs and symptoms of the condition. This can include a rash, weight loss, fever, extreme fatigue, arthritis, and more. The next steps involve talking to the patient about other signs and symptoms they are experiencing. A comprehensive physical exam is completed 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.

It depends on where you are located in the world. On average, even in a developed country, patients often have to see multiple doctors or specialists before they are formally diagnosed. Some studies quote 7-10 visits before patients see a rheumatologist who can diagnose them with lupus. There have been some reports that there is a delay of five years before individuals have a formal diagnosis and start treatment. Lupus is not based on a single blood test or symptom. It takes a lot of information to come together, akin to putting together a puzzle, and a physician experienced in seeing lupus to make a diagnosis.

Many of my patients are young women during their reproductive years who are starting families and building careers. A lot of my patients are also young women of non-white background, including Asians, Africans, Hispanics, and Indigenous patients. These non-white groups are more likely to have lupus and be affected more severely.

Many lupus symptoms can be very debilitating and/or painful. For example, we have joints all over our body and they allow us to do the things we love every day. For some lupus patients, pain, swelling, heated joints and other symptoms can prevent them from going to work and doing basic, daily living activities like dressing, brushing teeth, and bathing.

We know genetics plays a part, but just because someone in your family, like your mom or dad, has lupus, doesn’t mean you will develop it. We know that there’s more to it than genes. Environmental factors also play a role – certain chemicals or pollutants, and lifestyle. Smoking, as well as obesity and sleep deprivation, have been associated with increased risk of developing lupus. So, environment and lifestyle probably play just as important a role as genetics.

Biomarkers are molecules found in the body. They can be in the blood, muscles, or any fluid or tissue in the body. We are looking at whether or not they’re helpful in diagnosing disease. There are some specific biomarkers that are found in many lupus patients. However, some patients do not have these biomarkers, and scientists think they have unique lupus biomarkers that haven’t been identified yet.

My research passion is looking for biomarkers that can help us with an earlier and more accurate disease diagnosis. Research has shown that you can find these molecules in the blood even a decade before diagnosis. So, if we can find these biomarkers in patients before they even have lupus symptoms, we can counsel them about ways to prevent disease, or help them understand their risk of developing a disease like lupus. Making an early diagnosis is also important because we can initiate treatment in a timely manner and prevent irreversible organ damage. A lot of people currently come into our clinic in the very late stages when the disease has already spread to multiple organs. We want to catch these patients in earlier stages of the disease and stop them from progressing to the late stages.

There are complications related just to the disease itself, and then there are complications that result from untreated lupus, which often occur due to a delay in diagnosis or because of how difficult lupus is to treat. Disease complications can include rashes and scarring, as well as complications of the heart, lungs, kidneys and brain, which can be very serious. In the past, before effective treatments, a lot of patients died from the disease. When the disease is not well-controlled, there is an increased risk of infection, heart attacks, strokes and cancer. This is not because of lupus, but because of uncontrolled inflammation in the body over time.

Even though lupus can cause many different symptoms, the immune system is at the heart of the problem. However, the immune system is complex with multiple pathways of inflammation. There is still a lot of research that needs to be done to help us understand which pathways are affected in lupus to cause inflammation and dysregulation. This knowledge can be used to identify new medications to target that part of the immune system and potentially find a cure.

Articles

Lupus: A Hidden Financial Burden on Healthcare

A new study by Arthritis Research Canada has revealed that lupus – an autoimmune disease – places significant financial strain on health care systems even before diagnosis.

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Arthritis Research Canada Shows Lupus Patients Who Take Their Medications at Lower Risk for Type 2 Diabetes

An Arthritis Research Canada study has revealed good news for patients with lupus – showing that those who take their medications as prescribed, have a reduced risk of developing type 2 diabetes, compared to lupus patients who do not.

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Lupus by Cassie and Friends

Systemic lupus erythematosus (also known as ‘lupus’ or SLE) is a rare autoimmune disease. It occurs in approximately 1 out of 1,000 people in Canada and 10-20% of them have lupus that started in childhood.

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Using technology to predict risk of heart disease for people with lupus

Arthritis Research Canada’s scientists have developed a new tool, called SLECRISK, specifically designed to predict cardiovascular disease risk in systemic lupus erythematosus (SLE) patients. This tool was created using machine learning. Machine learning teaches computers to learn information from data using statistics. Variables specific to SLE like disease activity, duration, and certain blood markers were included in the SLECRISK tool.

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Understanding the experiences of patients with antiphospholipid antibodies

Lupus is a problem where the body’s defense system makes a mistake and recognizes its own tissues as foreign and then attacks them. It can cause problems in the brain, skin, heart, lungs, kidney, joints and blood. Almost half of lupus patients are at risk for blood clots and related problems in pregnancy. These clotting issues are not well-understood and treatments are not clear-cut. Studies show that patients do not have the resources they need to understand this diagnosis, make decisions about it, or discuss it with doctors. We will survey lupus patients with clotting problems on which information sources they use to understand their disease and how they feel about their interactions with doctors.

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Taking Antimalarial Medication As Prescribed Could Reduce the Risk of Heart Attacks in People with Rheumatoid Arthritis and Lupus

People with lupus and rheumatoid arthritis (RA) are at a higher risk of cardiovascular events such as heart attacks, strokes and blood clots. New Arthritis Research Canada study finds that the use of antimalarial medication often used in the treatment of these diseases, may lower this risk.

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Helpful Links

BC Lupus Society

The BC Lupus Society supports advances in research and treatments, create public awareness and provides education and support to people affected by lupus.

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BC Lupus Society Virtual Support Group

The BC Lupus Society offers support groups on Mondays and Wednesdays for people living with lupus, as well as family members caregivers.

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Lupus Canada

Lupus Canada is a non-profit organization dedicated to the mission and vision of improving the lives of Canadians living with lupus through research, advocacy, public awareness and education.

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