Life with Lupus
She and her husband and their two young children—ages three and five at the time—had just moved to Boise, Idaho. Some of her extended family lived only a few hours away, and she was working full-time as a clinical social worker—her first full-time gig since finishing graduate school and having children. And then the pain began.
“I was in excruciating pain all over my body,” Laurisa recalls. “My glands were swollen, my hair was falling out, and I was getting canker sores. I was miserable.”
Laurisa has vivid memories of just lying in bed and enduring the pain during that time. “It’s the kind of pain where you feel like your skeleton hurts,” she explains. “Your bones hurt. It’s just a deep, deep pain in the entire body.”
New to town and without a regular doctor, Laurisa visited a walk-in clinic where blood tests indicated that her liver functions were off and her sedimentation (sed) rate was high. The sed rate is a marker for inflammation in the body.
It took a long time for her to get in to see a rheumatologist, but when she finally did the diagnosis was made: lupus.
Lupus is an autoimmune disease. With an autoimmune disease, the body’s immune system mistakenly attacks the body’s own tissues and organs.
Lupus is characterized by chronic inflammation. As autoimmune diseases go, lupus is unique because it can affect many different systems in the body, including the joints, kidneys, skin, brain, heart, blood, and lungs.
The most common inflammation associated with lupus occurs in the joints. About 90 percent of people with lupus experience joint inflammation and arthritis—and live with chronic pain and fatigue.
Symptoms of Lupus
The symptoms of lupus can be so varied and ambiguous that it can be difficult to diagnose. What’s more, the symptoms often mimic those of other ailments.
In general, the symptoms of lupus depend on which body systems are affected by the disease but can include fatigue, joint pain, fever, chest pain, shortness of breath, dry eyes, headaches, confusion, a butterfly-shaped rash across the face, and more.
Many people with lupus are extremely sensitive to sunlight, and some cannot spend any time outside in sunlight.
On the more life-threatening end of the spectrum, lupus can be associated with blood clots, heart attack, stroke, and kidney failure.
No two cases of lupus are exactly alike. Some people develop symptoms suddenly—as Laurisa did—whereas others experience a slow onset of the disease. Some people have mild or no symptoms, others severe. Some people experience episodes—called flares—when the symptoms get worse for a period of time and then improve.
To further complicate matters, many people with lupus also suffer from other autoimmune conditions such as Sjögren’s syndrome, fibromyalgia, or rheumatoid arthritis.
“Sometimes lupus is hard to diagnose because it evolves slowly over time,” explains Bevra Hahn, MD, chief of rheumatology and arthritis at the David Geffen School of Medicine at UCLA. “It can be easier if there are many symptoms present.”
Making a diagnosis is tricky because the symptoms can vary over time and from person to person and often overlap with other disorders. There is no single test to diagnose the disease, but the American College of Rheumatology has established a set of common criteria that may indicate that lupus is present. Dr. Hahn says that, in general, if someone has at least one symptom and a positive test for the antinuclear antibody—an antibody that indicates a stimulated immune system—the person may have lupus. There is one exception: if a kidney biopsy shows lupus, that is considered a definitive diagnosis even in the absence of other symptoms.
Laurisa considers herself somewhat lucky that she was able to get a definitive diagnosis rather quickly—all thanks to those abnormal blood tests from her visit to the walk-in clinic when she experienced her first flare. Other people can struggle with symptoms for years before getting a diagnosis.
On the other end of the spectrum are patients like Susie Greinetz who are diagnosed with lupus even though they have no symptoms. In Susie’s case the diagnosis was the result of routine blood tests during pregnancy. “Some of the tests came back abnormal, so my doctor pursued it,” she explains. “He gave me a diagnosis but decided not to treat the lupus since I was asymptomatic. I know this is very unusual. From what I understand, some people have huge trouble getting a proper diagnosis.”
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What Causes Lupus?
The cause of lupus is unknown—but it is likely a result of some combination of genetics and environment. Some people may have an inherited predisposition to the disease—but the disease does not develop until something in the environment triggers it.
Two of the most common triggers for lupus are exposure to sunlight and certain medications. Because people with lupus are extremely sensitive to sunlight, exposure can trigger an internal response. Some types of antiseizure and blood pressure medications have been associated with lupus. The disease can also be triggered by infections.
“I know what triggered my first really bad flare,” Laurisa says. “I’m extremely sun sensitive, and I stood outside at the Fourth of July parade without sunscreen or a hat. Being out in the sun just kicked me into a horrible place. I was going into a flare; I just didn’t know it.”
There is no cure for lupus—but the symptoms can be managed with medications. Treating lupus is almost as tricky as diagnosing it because treatment is not one-size-fits-all.
“The keystone of treating any kind of lupus is cortisone-type drugs like prednisone,” Dr. Hahn explains. “The disease is pretty responsive to prednisone, but the problem is that it carries side effects. It’s best to start with a high dose and control the disease for a few weeks and then rapidly taper the dose if you can. It’s nice to get the dose to zero if you can, but that rarely happens.”
The side effects of prednisone are no walk in the park. Aside from cosmetic changes like acne, face puffiness, and weight gain, the medication can increase the risk of infection and diabetes, cause bruising and bone loss, and increase blood pressure. What’s more, Dr. Hahn explains, it tends to exacerbate personality characteristics—so a cheerful person might become almost manic, whereas a more gloomy person might become extremely depressed. No one particularly loves taking prednisone long-term, but it does offer the best symptom control. “Most people get to the point where they have some symptoms and some side effects, and they can live with that,” Dr. Hahn says.
In addition to prednisone, there are a variety of other types of medications used to manage the symptoms of lupus. Many people with lupus take an antimalarial medication such as Plaquenil® (hydroxychloroquine) or Aralen®(chloroquine). These drugs decrease autoantibody production and can help with skin rashes, mouth ulcers, fatigue, and joint pain. They may take a few months to improve symptoms (unlike the rapid response produced by prednisone). The side effects of antimalarial drugs are fairly mild and may include stomach upset and skin discoloration.
Another class of drugs used to treat lupus is immunosuppressive medications. This can include the chemotherapy agents Cytoxan® (cyclophosphamide) and Rheumatrex® (methotrexate) or another drug called Imuran®(azathioprine), which was designed to prevent the rejection of transplanted kidneys. Immunosuppressive medications are used to control inflammation and an overactive immune system. They are often used when prednisone fails to bring symptoms under control or when someone cannot tolerate high doses of prednisone. These drugs can cause severe side effects such as hair loss, sterility, and liver damage.
A newer approach to treatment involves monoclonal antibodies, which are targeted drugs that disrupt activation of B lymphocytes. Benlysta® (belimumab) is an intravenous drug given on a monthly basis. It is expensive, and patients have to meet certain criteria to qualify for it. It takes about four to six months to produce a response, but it can reduce the need for prednisone in some people.
Most people with lupus take at least one if not several medications to manage the symptoms of the disease. Even Susie, who had been mostly asymptomatic, takes antimalarial medication. “It doesn’t seem to be harming me, and I don’t have any lupus flares,” she explains. “I really don’t suffer. My disease has been incredibly mild. Maybe this medication keeps it in check.”
Laurisa represents the other end of the spectrum: she manages the disease with antimalarial medication, steroids, and immunosuppressive agents. “I was resistant to the medications for a long time,” she admits. “But I am fully medicated. I feel like I have medications to manage every function of my body—but that’s better than not functioning.”
Living with Lupus
“Managing a chronic illness is kind of a full-time job,” Laurisa explains. “It just changes everything that you thought you were going to be.”
Lupus is a permanent part of her life, and she has had to find ways to manage the disease—and still have a life. “I describe it as a very fragile ecosystem,” she says. “I’m constantly trying to manage it—not just with medication but with diet and by balancing work, activity, and rest. I have to alternate between activity and rest.”
Laurisa is lucky because her work as a clinical social worker allows her to set her own hours and work part-time. She is very careful about prioritizing and making commitments. “It’s sort of like I have a cup of energy and I want to make sure I’m not wasting that energy on things that aren’t important,” she says.
Still, it is a frustrating process. Laurisa cannot be as active as she would like to be, and she has to say no to a lot of fun invitations. “I can’t be as spontaneous as I’d like to be,” she says. If she accepts an invitation, it is always with the disclaimer that she will have to see how she feels when the time of the event arrives.
What’s more, she is constantly trying to strike a balance in her healthcare, choosing the traditional medicated route and supplementing with complementary treatments like acupuncture. She also maintains a strict diet. “In the whole eight years since I’ve been diagnosed, there have probably only been six to eight months that I wasn’t on a restricted diet,” she says. For her it is easier to maintain a strict diet than to deal with the consequences. The one time she tried to go off of the diet, she experienced achiness, joint pain, and intestinal distress.
Laurisa’s approach is spot-on. Dr. Hahn says that there are a variety of things that can trigger a flare—such as exposure to sunlight or an infection—but the most common recipe for disaster is a combination of stress and fatigue. Her patients tell her that preparation for a big event, like a wedding, can trigger a flare.
“Most people need a lot of extra rest,” Dr. Hahn explains. She advises people to pace themselves and minimize stress. When possible, she suggests that people work part-time or work from home in a self-employed setting because this allows them to set their own hours and build in time for rest.
“We may not be able to cure lupus, but there are a lot of things people can do to optimize how they feel,” Dr. Hahn says.
The Big Picture
For many people, living with lupus means learning to live with disease symptoms and the side effects of medication. It can be challenging to strike a happy balance, especially when the disease is a bit like a moving target.
“It’s sort of like a mirage illness,” Laurisa explains. “Right at this moment, I’m okay—but that could be different by the afternoon or evening.” _
There is no cure for lupus, but there are strategies for managing health, minimizing symptoms, and preventing disease flares. Dr. Hahn suggests that people with lupus make health a priority:
Build in time for plenty of rest.
Maintain a healthy weight. This is challenging when taking steroids, but Dr. Hahn recommends at least not letting weight get into the obese range.
Maintain aerobic conditioning for even just a few minutes each day.
Eat a heart-healthy diet.
Avoid prolonged sun exposure and wear sunscreen, a hat, and ultraviolet-protective clothing.
Lupus Foundation of America
S.L.E. Lupus Foundation