Lupus, Part 2 — Treatment, Side Effects, Restrictions, and Implications for School


The medications used in lupus are selected and prescribed to fit the needs of each patient. For example, if the symptoms of lupus are fairly minor, such as arthritis and rash, a relatively mild medication may be effective. In this example, treatment might begin with a class of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, Naprosyn®, and Celebrex®.

If the symptoms are not controlled by one of the NSAIDs, another class of medicines called disease modifying anti-inflammatory drugs (DMARDs) may be used. A mild DMARD that is especially useful against rash and fatigue is hydroxychloroquine. Methotrexate, a DMARD that can be given orally or by injection, requires regular laboratory monitoring. Even more powerful DMARDs, which are called cytotoxic drugs and include Imuran® and Cytoxan®, can be taken by mouth, by injection or by infusion. These powerful DMARDS are reserved for children with severe lupus involvement.

The most effective drug for controlling acute lupus is a glucocorticoid (steroid) called prednisone. More severe disease will require higher doses of the steroid, which will risk more severe side effects. Prednisone and other steroids are generally tapered off as quickly as possible.

Possible medication side effects

NSAIDs may cause side effects such as abdominal pain (which can be minimized if taken after meals), easy bruising, and headaches (rarely). Any child on hydroxychloroquine requires an eye exam at least once a year. A patient taking methotrexate and the other stronger DMARDs requires regular laboratory monitoring. Any student taking glucocorticoids may have weight gain, increased blood pressure, mood swings, loss of bone mass, and problems concentrating in school.

Physical, dietary and other restrictions

Since lupus is affected by the sun, the student should minimize sun exposure and use sunscreen and wear a hat when outside in the sun. A healthy diet is important to help manage the disease. A student taking glucocorticoids should limit salt intake and monitor the amount of food eaten, to avoid excessive weight gain. Fatigue may force the child to rest at school. If possible, this should be allowed in the nurse's office.

Implications for school

A student might be absent frequently for medical appointments and hospital visits. In addition, fatigue is often severe. Therefore, the amount of missed work that must be completed should be minimized when possible. It should be limited to what is necessary to reinforce the missed lessons and to continue academic success. The goal should be keeping the student current with the concepts being taught in class without adding stress by attempting to catch up with all missed assignments. Homebound education or a tutor should be considered during a lengthy absence.

As stated above, fatigue is often severe. A student with lupus might need to nap after school or go to bed very early, and this will limit the opportunity to complete homework assignments. This problem is much worse in secondary school, where multiple teachers might assign large projects with the same deadline. If the student has joint pain or swelling, physical education (PE) classes can pose a significant problem. A student, whose lupus affects the joints or mobility, must be allowed to set individual limits on activity. Lupus is a disease with enormous variability. It can be devastating one moment, but when the symptoms subside, the student might have no limitations at all. Consistent treatment can help reduce disease flare-ups. Lupus can also be life-threatening. The student can help ensure a good outcome by following medical advice with a consistent treatment plan.

Sometimes, a student with lupus may have cognitive changes or learning difficulties due to factors such as depression, central nervous system (brain) involvement and medication side effects. Symptoms may include:  memory loss; lack of concentration, attention and awareness; and a feeling of "being in a fog". The school personnel and the parents should carefully monitor the student's progress to ensure continued academic success. Education professionals may be the first to pick up on symptoms that would indicate potential problems. Inform the healthcare team about these symptoms so that they can provide the best treatment.

Education interventions may include providing tutorial assistance, evaluating the student for special education services, or developing a Section 504 Plan to ensure continued academic success. Lupus is not a static disease. The symptoms may vary widely for the student, with some days that are "good" days and others in which the youngster has a lot of pain, fatigue, and difficulty with concentration. A good Section 504 Plan or individualized education plan (IEP) may make a significant difference in school performance and continued success for the student with lupus.

In addition, students with lupus may experience difficulty with socialization and peer relationships. Other children may not know what to say or how to support their friend. With consent of the student and parent, peers can be educated about lupus and how to support their friend. For example, a school meeting might invite the parents, the student, school personnel and hospital personnel. At this meeting, academic and health goals are identified and methods for successful intervention can be formulated. This meeting can also serve as a springboard to educate peers about lupus and its impact on the student's life in and out of school.

Lupus affects all aspects of the child's life, and impacts the family deeply. It is essential to ensure that the entire community (educators, peers, coaches, clergy, scout leaders, friends and others) understand lupus, how it affects the child and family, and the best way to support them. Providing education and information to all who care about the child and family can ensure that they are not isolated, and will continue to receive the support needed to navigate a serious illness.

KU Kids Healing Place

During treatment for lupus, there are many challenges for the child and family. In addition to the essential medical treatments, it is important to care for the psychological, social and spiritual needs of the patient and the family. This type of care, called palliative care, previously had been reserved for only the sickest patients. However, research has demonstrated that palliative care helps maintain normalcy throughout treatment, recovery and life. Today, every child with lupus receives the benefit of palliative care, along with the family members. The KU Kids Healing Place (KUKHP), through the Department of Pediatrics at the University of Kansas Medical Center, focuses on treating all aspects of the child and family, ensuring that each receives the care needed to maintain psychological, social and spiritual well-being during treatment for lupus and on into life. The entire treatment team will work to ensure that the needs of the child are recognized and addressed both in the hospital and in the community, including school, sports, worship and activities. KUKHP partners with school professionals, peers, clergy, coaches, scout leaders and many others to ensure that the child continues to grow and achieve in all environments.

For more information

Part 1 — Introduction, Incidence and Symptoms

Lupus Foundation of America, Inc.
2000 L Street NW, Suite 710
Washington, DC 20036

Phone 202-349-1155
Fax 202-349-1156

Arthritis Foundation
P.O. Box 7669
Atlanta, GA 30357-0669

Phone 800-283-7800
Information about lupus in children and adolescents.

Contributed by:

Carol Lindsley, MD
Division Chief, Pediatric Rheumatology
Department of Pediatrics
University of Kansas Medical Center

Kathy Davis, MSEd, PhD
Associate Professor
Project Director, Connected Kansas Kids
Director, KU Kids Healing Place
University of Kansas Medical Center