“I refuse to let lupus get me down”

Key takeaways

• Lupus is an autoantibody disease in which the immune system mistakenly attacks healthy organs and tissue.
• Systemic lupus erythematosus (SLE) is the most common form of lupus, affecting up to 5 million people worldwide.
• Symptoms of lupus vary but commonly include fatigue, joint pain and a “butterfly” rash spread along the nose and cheeks.
• While lupus has no cure, Johnson & Johnson is working to advance potential treatments that may help manage symptoms of SLE.
  

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On the outside, Laurie Bean is the picture of health. She’s devoted to exercising, takes vacations around the world with her family and holds down a fast-moving job as a project manager in immunology for Johnson & Johnson.

What people don’t see is that Bean, 45, is frequently exhausted. She rarely sleeps well. And her joints are often so inflamed, it’s difficult for her to move.

“Inside, this body of mine is just mass chaos,” she says.

Bean lives with systemic lupus erythematosus (SLE), a debilitating immune-mediated disease that causes the immune system to mistakenly go on the attack, resulting in inflammation that can damage otherwise healthy organs, tissues and joints.

SLE is the most common of the four types of lupus, affecting 70% of lupus patients.

From 3 to 5 million people around the world have been diagnosed with SLE, including 450,000 individuals in the U.S. Symptoms vary but commonly include episodic flareups of fatigue, joint pain, hair loss and a rash across the nose and cheeks known as lupus rash.

Yet lupus can present differently in everyone. That often delays the diagnosis of the disease, which is what happened in Bean’s case. “I never had the traditional lupus rash or hair loss,” she explains.

SLE currently has no cure. Treatments are available to try to reduce the inflammation and prevent complications, which can include seizures, organ failure, heart attack and stroke. But they don’t work for every patient, and there’s a strong unmet need for additional therapies that are approved by the U.S. Food and Drug Administration (FDA) as effective for SLE.

“It’s not an easy road at all, and this is such an invisible disease for so many people,” says Bean.

The physical toll of lupus can be difficult to manage, requiring Bean to schedule multiple doctor visits and adjust her stress and activity level. But because SLE is so unpredictable and often “invisible” to the outside world, as Bean says, there’s a hidden emotional cost as well.

“Mentally, it’s a very hard thing to go through,” she says, describing flares as “the random episodes of my immune system going out of whack.”

Here, Bean shares her lupus journey, from her first puzzling symptoms to more serious complications, and what day-to-day life is like living with this painful, complex disease.

The first symptoms of lupus

When Bean was a senior in high school in 1999, the tip of her left pinky suddenly turned blue. “I played lacrosse, and when I went to the doctor, their first thought was, ‘Oh, it’s just a bruise,’” says Bean.

When the discoloration and throbbing sensation in her finger didn’t go away, Bean consulted with a second doctor, then a third and a fourth.

The fifth doctor she saw ordered blood work, which revealed that Bean had a rare immune-mediated condition called antiphospholipid antibody syndrome (APS). It’s caused by a buildup of abnormal immune proteins in the blood, which could lead to the formation of potentially dangerous clots anywhere in the body. In Bean’s case, two clots had lodged in a blood vessel in her pinky, reducing blood flow.

Bean started treatments to clear the clots and prevent more from forming. But additional blood tests done when she was diagnosed with APS showed high levels of antibodies in her blood that pointed to a second autoimmune condition: lupus.

Experts are still trying to learn more about lupus, but it appears to be triggered by a combination of genetic and environmental factors. Hormones also play a role, as nine out of 10 people diagnosed are women.

No specific test can definitively diagnose lupus. Instead, doctors rely on the results of various lab tests, as well as patient symptoms and medical history.

Despite the test results, and the fact that one in four individuals with an immune-mediated disease develops another, Bean’s doctor wasn’t convinced she had lupus. He attributed the high antibodies in her blood to APS, yet said lupus was a possibility to monitor.

Bean, who had never heard of lupus, put it out of her mind.

Getting a diagnosis of SLE

Throughout her twenties, Bean managed APS with anticoagulant therapies. But she still lived with severe fatigue and joint pain. Despite taking care of herself, “there were times I just didn’t feel great,” she recalls.

At 26, she became pregnant. During her third trimester, she developed an odd symptom: Her hands became severely inflamed, painfully sore and covered with welts. A course of steroids only made them worse. “I literally could not put my hands below my heart,” Bean says. “I had to walk around like a T-Rex, because otherwise, they would throb.”

After the birth of her son, blood clots on Bean’s placenta led her doctor to biopsy the skin on her hands. “They found that I had millions of tiny capillary clots,” says Bean. More testing confirmed that she did indeed have SLE.

Bean was relieved to finally have a diagnosis to explain longtime symptoms like persistent exhaustion and flares of joint pain. But her primary reaction to the news was denial.

“In my head, I was like, ‘I’ve got a child to take care of, and I’m going to focus on that,’” she says. “I refused to let lupus get me down.”

Making changes to keep flareups at bay

Not letting lupus get her down meant choosing a lifestyle that Bean says continues to help her “stay off the roller coaster” of the disease. To that end:

• She prioritizes her health. Bean realized early on that if she gets enough sleep and makes time for regular yoga sessions or elliptical workouts, her joint pain feels more manageable. “I need exercise in my daily life to keep my body and my joints moving,” she says. If not, “I can wake up and randomly, a wrist or a knee will hurt.”
  
• She tries not to let herself get run down, grateful that flexible work arrangements help preserve her limited energy levels. “I do well at my job, but my managers let me do it in my parameters that protect my health and well-being,” says Bean.
  
• Leaning on loved ones for support helps. “My husband is my rock,” she says. “He’s been standing by my side the entire time. I could not do this without him.” He accompanies Bean to doctors’ visits and serves as a sounding board for treatment decisions.
  
• Working with a doctor she trusts makes all the difference. “Finding a good rheumatologist is very challenging,” says Bean. “But you need someone you can trust to guide you through the care, because lupus is not a simple disease.”

Above all, she puts these health and lifestyle steps front and center.

“If I don’t take care of my health, I’m not going to be a good employee, I’m not going to be a good mom, I’m not going to be a good wife,” she says. “And the people in my life and the orbit that I’m in need to understand that.”

Additional fallout from SLE

Lupus is typically a progressive disease, and the hardest part of living with SLE, says Bean, is “waiting for the other shoe to drop.”

“When I have the smallest pain, sometimes I panic and think, ‘Oh my gosh, is it going to turn into something huge?’ It’s traumatic, because you just never know when some weird element of lupus is going to flare up,” she explains.

Even though she’s been largely able to manage day-to-day life, that other shoe has dropped hard. Lupus contributed to a lost pregnancy and uterine bleeding that led to a hysterectomy. She’s had severe nerve damage in her left leg that required relearning how to walk.

She’s experienced a ruptured appendix, a brain bleed and a heart attack. She currently lives with heart failure, though she’s “too healthy to qualify for a heart transplant,” she says. As scary as that sounds, it’s not unusual, as half of all people with SLE have or will have a major organ or tissue affected by the condition.

Bean has also been diagnosed with a third autoantibody condition, Sjögren’s disease. It happens when the immune system attacks glands in the body that make moisture, causing symptoms like painfully dry eyes, mouth and skin, along with worsening fatigue and muscle pain.

“Lupus has caused chaos in my life,” Bean says. “It’s like dominoes—one thing starts to fall, and that topples so much more inside me.”

Advancing potential treatment options for lupus

There are two FDA–approved treatments indicated for SLE. While available options can help some people manage their disease, not all patients respond to treatment the same way.

Over the years, Bean has tried disease management approaches that, for her, weren’t effective, brought on side effects she couldn’t tolerate or worsened the other health conditions she lives with. Until a cure for lupus is found, more therapeutic options are needed to help people like Bean effectively manage their daily symptoms and improve their quality of life.

Ongoing scientific research is focused on better understanding how factors such as autoantibodies and immune signaling pathways play a role in inflammation in autoantibody conditions. Johnson & Johnson is investigating a potential treatment option that may target pathogenic autoantibodies present in SLE, with a Phase 3 study that is now underway.

For people like Bean who live with SLE, more options to manage the disease can’t come soon enough.

“Because of lupus, my body can just go haywire, and there’s nothing I can do to control it,” Bean says. “I fight this battle every day.”