Systemic Lupus Erythematosus (SLE) | Frequently Asked Questions

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

Contact the Department of Rheumatology

Why did my child get lupus?

We don’t know exactly why some children’s immune systems begin attacking their own bodies. It’s related to something in their genes and likely a number of other, unknown factors. It’s important to remember that your child’s lupus wasn’t caused by anything you did, and there’s nothing you could have done to prevent it.

Will my other children get lupus, too? Can they be tested?

Though lupus isn’t a disease that passes directly from parent to child, it does tend to run in families. However, the risk is low enough that it’s very rare for two siblings to have lupus. And while there are blood tests that can help doctors make a diagnosis of lupus, they don’t provide useful information about children who have shown no symptoms of disease.

Can vaccinations trigger lupus?

Vaccinations DO NOT cause this disease. Moreover, if your child has lupus, it’s important that she continue receiving vaccinations against things like tetanus, flu and pneumococcal disease, because both her illness and the medications used to treat it can leave her more vulnerable to infections. The only exceptions to this rule are “live” vaccines—like MMR (measles, mumps and rubella) and nasal flu sprays—which can be harmful for kids with a suppressed immune system.

Is there a link between lupus and aspartame?

There is a lot of misinformation about lupus on the Web, including a widely circulated warning that the artificial sweetener aspartame causes lupus. But there is absolutely no scientific proof that aspartame , or anything in our diet, for that matter, causes lupus or makes it worse.

Is lupus similar to AIDS?

Although both diseases involve problems with the immune system, lupus and HIV/AIDS are almost polar opposites: In lupus, the immune system is overactive, while in HIV or AIDS, the immune system is underactive. In addition, lupus is not infectious—unlike AIDS, it can’t spread through sexual contact, blood transfusions or infected needles.

How can lupus be fatal?

Lupus is most dangerous when it affects vital organs. In young children, doctors watch closely for any involvement of the kidneys and the central nervous system (the brain and spinal cord), because these two organ systems require the most immunosuppression and, if damaged, can have life-threatening complications.

Over the long run, the leading cause of death among lupus patients is cardiovascular disease. But if children with lupus develop heart-healthy habits early on, they can significantly reduce their risk for this illness later in life.

Will my child need to be on medication her whole life?

Kids with very mild cases of lupus may require certain medications only when their symptoms bother them: ibuprofen for achy joints, for instance, or cortisone cream for skin rash. But all lupus patients should take hydroxychloroquine, an antimalarial drug that’s been shown to decrease lupus flares, every day and possibly for the rest of their life.

The good news is that the lupus drugs with the most serious side effects—like corticosteroids—are rarely used over the long term. Instead, doctors aim to get kids off these powerful medications as soon as possible.

How can I find out about clinical trials for lupus?

Start by asking your child’s doctor, who will be the best source of information about any new treatment that might benefit your child. You can also learn more about clinical trials at the Lupus Foundation of America’s website to search for current and upcoming trials at Children’s.

Can lupus be prevented?

There is no way to keep a child from getting lupus; there are no vaccines against this illness, no special diet to ward it off. But once the disease begins, there many important ways you and your child can help in treating it.

  • Stick to the medications. Some drugs used to fight lupus must be taken for a long time, even years. Others, like corticosteroids, may have unpleasant side effects. It’s not unusual for kids to want to skip their medications when they’re feeling better (one study of pharmacy receipts showed that 40 to 50 percent of lupus patients had failed to refill their prescriptions—and those were adults!). But taking all medications as prescribed—what doctors call adherence—is what keeps the brakes on this disease: Skip a dose, and it will pick up speed.
  • Alert your doctor to any new symptoms. Firefighters can’t predict where a blaze will happen, but instead swing into action when one breaks out. Battling lupus is a similar process: Doctors can’t predict what parts of the body the disease may choose to affect, so they treat your child based on what’s actually “on fire” (active kidney inflammation, for example). New symptoms may mean lupus has spread to another part of the body, and you’ll want to sound the alarm for your child’s doctors as soon as possible.
  • Take steps to avoid flares. The symptoms of lupus tend to alternate between being fairly quiet and then being very active, called a flare. To help keep your child’s symptoms under control, make sure she eats well and gets enough sleep and exercise, and avoids things that can trigger flares, especially undue sun exposure.

What are the potential complications of lupus?

For reasons we don’t yet understand, lupus often attacks children’s vital organs, which can cause some of the most serious problems. While it can be distressing to learn about lupus’ potentially life-threatening complications, it may help you understand why doctors often go after this illness with powerful drugs like corticosteroids, which have their own possible risks and side effects.

Potential complications of lupus include:

  • kidney disease (called nephritis), which affects about 60 percent of children with lupus. If unchecked, kidney disease can progress to the point where a child needs dialysis or even a transplant. It’s one of the leading causes of death in pediatric lupus patients.
  • central nervous system problems (often cerebritis, inflammation of brain tissues), which affect about 20 to 30 percent of children with lupus and can cause mood changes, memory problems, seizure and even stroke.
  • hematological (blood) problems, which affect more than half of children with lupus. The most frequent blood-related complication is a lack of red blood cells, or anemia. Other problems include leukopenia, a decreased number of white blood cells, which can lead to infections; and thrombocytopenia, a decreased number of blood platelets, which can cause clotting problems.
  • arthritis, or joint inflammation, which affects more than 75 percent of children with lupus. Possible long-term complications of joint inflammation are osteoporosis (weakened bones) and restricted motion of joints.
  • respiratory problems (called pleuritis, inflammation of the lining of the lungs), which affect up to half of children with lupus.
  • heart problems(often pericarditis, inflammation of the membrane around the heart), which affect up to 25 percent of children with lupus. There is also a higher risk for serious cardiovascular disease later in life.

In addition, all kids with lupus have a greater risk for developing infection. This is because their immune system is not working properly, but also because many lupus medications work by actually suppressing the immune system, further lowering the body’s defenses against invaders like bacteria and viruses.

What is the long-term outlook for my child?

Not that long ago, lupus (in both children and adults) was considered an untreatable disease. One study of lupus patients in the 1950s found that less than half were alive four years after diagnosis.

But advances in treatment have made the outlook for today’s lupus patients considerably brighter. While this remains a serious and long-term illness, an estimated 85 percent of people with lupus will live a normal lifespan. 

The outlook for your child depends on a great deal on how severe her illness is. Lupus can be mild, causing skin rashes and joint aches, which require minimal treatment. The disease can also be very active, and if it spreads to vital organs it can do a lot of damage—sometimes irreversible. Your doctor will be the best source of information about what form of lupus your child is facing, and what it might take to bring it under control.

Even if your child’s lupus “settles down”—either on its own or through treatment—it never goes away completely. To help keep the disease from flaring up, your child will probably be taking some type of medication for years to come. She’ll also need to see her doctor regularly for checkups. But by helping your child do these things and adopt good health habits for life (avoiding sun exposure, eating well, exercising), you’ll ensure the best possible outlook for her future.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

Close