Treatments for Pediatric Lupus (Systemic Lupus Erythmatosus) in Children

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Contact the Department of Rheumatology

A diagnosis of lupus can be very difficult for a parent to hear. But at Boston Children's Hospital, we view the diagnosis as a starting point: Having identified your child's condition, we're able to begin the process of treating your child. We will work with you and your child to bring the symptoms of lupus under control, head off complications and, ultimately, send your child into adulthood as healthy as possible.

Treating an unpredictable disease like lupus is like fighting a fire: Doctors can't know where it might spread, so they focus on what's actually “on fire”—the places in your child's body where lupus is active right now. If lupus is affecting your child's kidneys and central nervous system, for example, the treatment will be very different from what it might be if the disease is affecting your child's skin. This is why it's essential to let your child's doctor know when new symptoms appear, since they could mean another part of the body is under attack.

The medications used to treat lupus fall into two main categories. Nonimmunosuppressants tend to be milder drugs that fight inflammation or help ease discomfort, and have few side effects. Immunosuppressants are much more powerful drugs aimed at bringing the malfunctioning immune system under control. Some have significant side effects and—because they suppress the immune system—all increase the risk of infection.

Nonimmunosuppressants

  • Antimalarials: most often hydroxychloroquine (Plaquenil) help reduce the frequency of lupus flares. They are among the safest, most gentle drugs for lupus, yet go a long way toward preventing its life-threatening complications. Most children can expect to be on antimalarials for an indefinite period of time. A potential side effect of hydroxychloroquine is eye problems, but this can be monitored through twice-yearly visits to an ophthalmologist.
  • Nonsteroidal anti-inflammatory drugs (NSAIDs) ease symptoms like pain, swelling and stiffness, and are used mainly for kids with lupus arthritis. Among the most common NSAIDs are ibuprofen and naproxen, given in therapeutic doses (that is, higher than the over-the-counter versions). Potential side effects, like stomach problems, are monitored for, but tend to be mild.

Immunosuppressants

  • Corticosteroids—most often prednisone—aren't the same as the anabolic steroids that athletes sometimes take. These are powerful, fast-acting drugs that suppress the entire immune system. Many kids with lupus will need corticosteroids at some point. However, doctors work to phase them out as soon as possible because of their potential side effects, which can include weight gain, facial puffiness (a “cushingoid” appearance), acne, high blood pressure and reduced bone density.
  • Steroid-sparing therapies offer many of the benefits of corticosteroids, usually with fewer side effects, but may take much longer to work. You may also hear these drugs called DMARDs, for disease-modifying anti-rheumatic drugs. This group includes methotrexate;azathioprine (brand name Imuran); and mycophenolate mofetil, or MMF (CellCept). Side effects vary by medication, but may include liver problems and anemia.
  • Biologics are a relatively new class of steroid-sparing therapies that are based on compounds made by living cells. Instead of suppressing the entire immune system, biologics are more like smart bombs—they only target certain parts of it. Biologics used in lupus include rituximab (Rituxan), tocilizumab (Actemra) and belimumab (Benlysta). Side effects vary by medication.
  • Cytotoxins are drugs that destroy rapidly dividing cells in the overactive immune system. Cytotoxins—such as cyclophosphamide (Cytoxan)—are so potent they're usually reserved for lupus patients with serious kidney disease or central nervous system problems. Side effects may include nausea and vomiting, hair loss and bladder problems.

Aside from medications, your child's doctor may also prescribe IVIg (intravenous immunoglobulin), which is a blood product made up of healthy antibodies that is delivered by IV, and can help get the immune system back on track. Much more rarely, your child may need to undergo plasmapheresis, a process that removes autoantibodies from the blood. But because it also takes away normal antibodies, it significantly weakens the immune system. That's why doctors treat only very severe lupus with plasmapheresis.

Complications of lupus require their own medications and treatment procedures, too—dialysis for serious kidney disease, for instance. Your child's doctor will discuss these with you in detail if and when any complications arise.

A final note: Medicine is essential, but it's not the sum total of your child's treatment for lupus. Many kids with lupus also require physical and occupational therapy, to increase their mobility and muscle strength and to learn ways to make day-to-day activities easier on their bodies. And because chronic illnesses like lupus can be mentally and emotionally tough to deal with, psychotherapy or counseling can be valuable in helping kids keep the positive outlook they need to beat their disease.

Alternative therapies

When your child is facing a chronic illness like lupus, it's understandable that you would want to explore all the treatment options. But despite what you may read on the Internet, or hear from friends of friends, there is no “hidden” cure for lupus. No magic herb or special diet will restore your child to perfect health.

That said, there are some things outside conventional medicine—like acupuncture or meditation—that are fairly well studied and do seem to help some people with lupus.

A few words of caution before embarking on any alternative therapies, however:

  • Talk it over with your child's doctor. It's important that whatever you have in mind won't interfere with the overall treatment plan. Also, the doctor may know other patients who have tried the therapy— and whether it helped them.
  • Don't skip prescribed treatments. Alternative therapies are meant to supplement traditional medicine, not replace it. It's vital that your child stick to her medications, or else risk letting her illness get out of control.
  • Avoid fly-by-night practitioners. For things like reiki, acupuncture and massage, always ask your doctor for a referral, if appropriate, or recommendations on how to find a qualified care provider.
  • And be prepared to pay: By and large, health insurance plans don't cover alternative therapies.

At-home remedies

Lupus is chronic, incurable and unpredictable. But it's not unbeatable. And you can fight it by helping your child make some simple lifestyle changes at home.

  • Eat a healthful diet. Make sure your child is getting plenty of fruits and vegetables, whole grains, low-fat dairy products and lean sources of protein. And load up on Vitamin D and calcium, especially if your child is taking corticosteroids, which can weaken bones.
  • Stay active. Encourage your child to walk, swim, bicycle and simply get out and play. While she'll have to be careful not to get overtired, exercise helps keep muscles strong and joints flexible. And since all lupus patients are at greater risk for cardiovascular disease later in life, making a habit of exercising now will mean better heart health in adulthood.
  • Beware sun exposure. Because the ultraviolet rays in sunlight can trigger a flare, your child should wear plenty of sunscreen (SPF 30 or higher) when she goes outside. Protective clothing like hats and long-sleeved shirts—like the ones shown here—are also strongly recommended.
  • Get plenty of rest. People with lupus are prone to fatigue, so remind your child to take a break if she's feeling run-down—a brief nap can be tremendously helpful in recharging a kid's batteries. And a full night's sleep is essential.

By doing these things and becoming a full partner in your child's health care—keeping clinic appointments, alerting doctors to any new symptoms—you may end up feeling more in control of what can be a very daunting illness.

Coping and support

We understand that you may have a lot of questions when your child is diagnosed with lupus. How will it affect my child's life? What do we do next? We've tried to provide some answers to those questions here, but there are also a number of other resources to help you and your family in dealing with your child's unique illness, such as:

  • Parent-to-parent connections: Want to talk with someone else whose child has lupus? A number of Children's parents volunteer for special training to help the families of newly diagnosed kids. Alternatively, your child's doctor may be able to put you in touch with a mom or dad of another patient who can share their experiences with you.
  • Social work: Our Rheumatology Department includes social workers—in both inpatient and outpatient settings— who have assisted many other families whose children have lupus. Your social worker can offer counseling and problem-solving advice on issues such as coping with your child's diagnosis; dealing with financial difficulties; and finding temporary housing near the hospital if your family is traveling to Boston from another area.
  • Behavioral Medicine Clinic: This program has an experienced team of pediatric psychologists, psychiatrists and other mental health professionals to help children and families deal with the extra stress that lupus can bring. Offering evaluations, short-term therapy and family counseling, the clinic staff can teach you ways to prevent or better deal with the emotional and behavioral problems that lupus can stir up.

In addition, there are many groups that help connect and educate people across the country who are coping with lupus. A great one to start with is the Lupus Foundation of America, a major nonprofit devoted to supporting lupus patients and finding a cure. It has 300 chapters in 32 states, as well as an information-packed website that includes links to programs that help pay for medications, message boards for patients and families and a list of local support groups.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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