Joint pain, face rash, and flu-like symptoms: Could it be lupus?
Systemic lupus erythematosus, or what’s usually referred to simply as lupus, is an autoimmune disease that isn't fully understood. The symptoms vary from person to person, and it’s difficult to diagnose.
Unfortunately, late diagnosis can be devastating, said Parastoo Fazeli MD, a rheumatologist and director of the lupus clinic with M Health Fairview and an associate professor at the University of Minnesota Medical School.
Lupus causes the immune system to attack healthy tissue, which can cause severe pain and damage any organ or system in the body. Fazeli is particularly concerned about kidney damage.
“If you do not treat the kidney inflammation or lupus nephritis right away, people can end up having kidney failure, which is not reversible,” Fazeli said. “People who get diagnosed late can end up on dialysis or needing a kidney transplant.”
Kate Betzel, CNP, a nurse practitioner at M Health Fairview University of Minnesota Medical Center, feels fortunate that she was diagnosed early. Now she’s working to spread awareness to help others get diagnosed as quickly as possible.
“I was suspected to have lupus in 2014,” Betzel said. “I developed unexplained fevers, joint and muscle pain, malar 'butterfly' rash, night sweats, oral and nasal ulcers, Raynaud phenomenon, weight loss, and exhaustion. Systemic lupus erythematosus was my confirmed diagnosis in 2016.”
Signs of lupus
Lupus mainly affects women between 15 and 44. The exact cause is unknown, but most researchers believe it’s a combination of environmental and genetic factors. It often starts after an infection, use of medications, or exposure to sunlight – often in combination with other triggers.
“I had patients who were the picture of health, then they had a trip to Hawaii or somewhere sunny when they started having first signs of lupus,” Fazeli said. “There are other triggers, like stress or infection. There is often a major emotional trauma in the background like going through immigration, losing a parent, or even a stressful job situation.”
Betzel first started experiencing lupus symptoms in the weeks following a trip to the Himalayas, where she hiked at 17,000 feet in the snow.
“It was the brightest, strongest sunshine I’ve ever experienced,” she said. “My lips were sunburned. The insides of my nostrils were even sunburned from the sun reflecting off the snow.”
Symptoms of lupus include:
- Fatigue.
- Joint pain or swelling that’s usually worst in the morning. People often have a hard time using their hands to pour coffee, open doors, or button their shirt, but as the day goes on it gets better. This is different from osteoarthritis, which worsens with activity.
- A distinctive butterfly-shaped rash across the cheeks and nose that lasts a few days and is usually triggered by the sun. It’s different from getting red in the sun.
- Fingers and toes that turn white or blue in response to cold or stress.
- New hypertension (high blood pressure) particularly in young people.
- Unexplained fever or flu-like symptoms.
- Presence of protein in urine.
Getting a lupus diagnosis
No single test diagnoses lupus, but if you have four or more of the symptoms for lupus, your doctor may classify your disease as lupus.
Your doctor might also recommend a blood test to look for the presence of antinuclear antibodies (ANA). The presence of ANA indicates that your immune system is attacking your body’s own tissue. It's extremely rare to have lupus and not to have ANA, so this test might rule out lupus as a diagnosis, but it can’t definitively say you have lupus. That’s because other autoimmune conditions, such as rheumatoid arthritis or scleroderma, also result in positive ANA tests. Some medications can lead to positive test results, and about one in five women just has ANA without also having an autoimmune condition.
Getting a lupus diagnosis can take advocating for yourself, Betzel and Fazeli said. You know best if something has changed for your body. The joint pain, swelling, and stiffness that comes with lupus might not be visible, and it won’t show up on a lab test. But the symptoms are real and affect quality of life.
“I understand what it's like to be in a lot of pain that no one else can see,” Betzel said. “I understand the time and the resources needed to care for and advocate for yourself as someone with a chronic illness. I also understand how it feels to want more answers than medicine can currently offer.”
Sometimes Betzel sees people who are in pain with no clear cause, which can be frustrating. She reassures them that she believes them and wants to help them get an answer. Sometimes it just takes time to get the right diagnosis.
Some people are told they have fibromyalgia, chronic pain syndrome, depression or stress when they have lupus arthritis, Fazeli said. Getting the correct diagnosis is important because treating the condition early improves outcomes.
Living with lupus
There’s not one treatment for lupus since the condition and its symptoms vary widely for each person. Medication can suppress the immune system, ease pain, or calm inflammation. Betzel gets hers through a monthly infusion.
“People with lupus who were diagnosed late, didn't take their medications for many reasons, or were in kidney failure by the time they sought treatment usually experience worse outcomes,” Fazeli said.
People with lupus should also follow their provider’s recommendations for check-ups because lupus can increase the risk of other health conditions, including cervical cancer.
“Trust your gut feeling if you feel there's something seriously wrong with you and the doctors don't understand. Seek another opinion or find a primary care provider who you trust,” Fazeli said. “A good primary care provider is truly a lifesaver.”
Learn more about primary care at M Health Fairview
Advocating for research – and yourself
Betzel is grateful to her care team that is helping her manage her symptoms, so she can continue her work as a nurse practitioner and advocate for more research on lupus. She also encourages people to register for clinical trials.
