Systemic lupus erythematosus (lupus) is a chronic condition that can affect various parts of the body. Children who have lupus often need multiple medications to help manage their symptoms. Since lupus affects every person differently, not every child will need the same medications. Your doctor will work with you to develop a treatment plan that is best for your child’s individual needs.
What medications are used to treat lupus?
Lupus causes the immune system to overreact, which leads to excess inflammation. Lupus medications work by preventing your child’s immune system from becoming overactive. These medications are called immunosuppressants.
Also known as “steroids” (though these aren’t the same as the steroids that athletes sometimes use), corticosteroids are often the first immunosuppressant medication your child’s doctor will prescribe after lupus is diagnosed. This is because steroids work quickly to suppress the immune system and ease symptoms. However, because of their side effects (see below), steroids aren’t a long-term medication option. Over time, if your child’s symptoms and lab work are improving, the dose will be tapered off.
The goal for your child’s long-term treatment will be another kind of immunosuppressant called a “steroid-sparing” maintenance medication. There are several types of maintenance medications that doctors use to treat lupus in children. The one your doctor chooses often depends on which part of your child’s body has disease activity.
Some examples of maintenance medications include:
- Mycophenolate mofetil—a daily oral medication
- Azathioprine—a daily oral medication
- Tacrolimus—a daily oral medication
- Belimumab—a monthly intravenous (IV) medication
If your child’s disease is more severe, your pediatric rheumatologist may recommend treatment with a stronger IV immunosuppressant that’s normally used to treat some kinds of cancer. These medications have also been shown to be effective in treating severe, active lupus and they include:
For kids with severe arthritis symptoms, your doctor might prescribe an immunosuppressant that’s used to treat juvenile idiopathic arthritis (JIA) such as:
- Methotrexate—either an oral medication or an injection
- Biologic medications such as abatacept or tocilizumab—either an injection or an IV infusion
Methotrexate shouldn’t be given to children whose kidneys are affected by lupus, which is called lupus nephritis.
Hydroxychloroquine—A daily oral medication that’s used along with steroids and/or maintenance medications, hydroxychloroquine is in a group of medications called antimalarial. It has been shown to help prevent lupus flares and treat skin and joint symptoms.
Nonsteroidal anti-inflammatory drugs (NSAIDs)—NSAIDs like ibuprofen or naproxen can also be used along with other medications for children who have arthritis. If your child has lupus nephritis, NSAIDs aren’t a good choice because they can cause kidney damage.
What are the side effects of all these medications?
Your child will likely need to be on steroids at some point. But since using steroids for a long period of time increases the chances of serious side effects, your doctor will take your child off them as soon as possible.
Possible side effects of steroids include:
- Weight gain
- Increased appetite
- Elevated blood sugar
- High blood pressure
- Weak bones
- Mood changes
- Stomach upset
While your child is on steroids, taking calcium and vitamin D supplements every day can help prevent bone damage, and an over-the-counter acid-reducer can help minimize an upset stomach.
Children need to be monitored with regular exams and bloodwork while taking maintenance immunosuppressants like mycophenolate mofetil, azathioprine, tacrolimus, belimumab, cyclophosphamide, and rituximab.
Side effects of these medications may include:
- Allergic reactions
- Gastrointestinal issues like abdominal pain, nausea, or diarrhea
- Changes in blood test results
- Injection site reactions (for injected medications)
Cyclophosphamide has other specific potential side effects too, including:
- Hair loss—This may be prevented by putting ice caps on your child’s scalp during the infusion.
- Fertility issues—Your doctor may discuss hormone treatment with you to help.
- Bladder problems—Your doctor will give your child another medication and fluids to prevent this.
Because steroids and other immunosuppressants stop parts of the immune system from working well, children taking these medications may have a higher risk for certain infections. It’s important to consult with your pediatric rheumatologist if your child develops a fever while on these treatments.
Children on immunosuppressive medications can receive routine childhood vaccinations that are inactive, but they shouldn’t receive “live” vaccinations (for instance, vaccines for measles-mumps-rubella [MMR], varicella, rotavirus, or yellow fever). Live vaccinations may cause an active infection in your child because of their weakened immune system.
Some of these medications have been linked with developing cancer. This has been a big concern for many healthcare providers and parents, but since the research isn’t clear, this link has been controversial.
If you have questions, be sure to talk to your child’s pediatrician or pediatric rheumatologist.
Hydroxychloroquine is generally well tolerated with minimal side effects. The most serious side effect of long-term use of hydroxychloroquine is damage to the retina, which is in the back of the eye. This risk increases the longer your child takes the medication, so they will need to see an eye specialist called an ophthalmologist to be closely monitored.
Some of these medications may be harmful to a developing fetus during pregnancy, so sexually active adolescent females need to be aware of these risks and be on some type of birth control. Ideally, these birth control treatments shouldn’t contain estrogen, because this could increase the risk of blood clots.