Spotlight on Lupus
Most people think of minor aches and pains when they hear “arthritis.” It’s also believed to be something that affects only older people. In reality, arthritis can be due to over 100 different diseases, including rheumatoid arthritis, gout, fibromyalgia, osteoarthritis, lupus, and these diseases can strike at any age. In fact, many patients who are diagnosed with arthritis due to lupus are young women.
Lupus is a chronic, autoimmune condition that leads to widespread inflammation in the body and can cause organ dysfunction. An autoimmune disease is when the immune system stops being able to recognize what is foreign – like a bacteria or virus – and what is itself. As a result, it starts attacking organs in the body and causing organ problems. Sometimes, those organ problems are irreversible.
Lupus can affect any part of the body, including the heart, brain, kidneys, skin and more. Every lupus patient is different. Some patients may have a butterfly rash on their face. Other patients may have kidney problems. Some patients can even have brain involvement, including seizures, psychosis, and hallucinations. These differences make diagnosing lupus challenging.
To answer some important questions about lupus, we spoke with Arthritis Research Canada’s Research Scientist, Dr. May Choi. Dr. Choi is a rheumatologist who conducts research to understand how lupus occurs in the body.
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.
How long does it typically take someone to be diagnosed with lupus?
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.
Who does lupus typically affect?
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.
How does lupus affect a person’s everyday life?
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.
What are some of the risk factors for developing lupus?
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.
What are biomarkers?
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.
How do biomarkers play a role in early diagnosis of lupus?
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.
What are some of the complications that can happen if you’re diagnosed later?
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.
What can we look forward to in lupus research?
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.
Want to learn more about Dr. Choi’s lupus research?
Watch Episode 14 of the Arthritis Research Education Series.
