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Who Treats Juvenile Rheumatoid Arthritis?
The special expertise of rheumatologists in caring for patients with JRA is extremely valuable. Pediatric rheumatologists are trained in both pediatrics and rheumatology and are best equipped to deal with the complex problems of children with arthritis and other rheumatic diseases. However, there are very few such specialists, and some areas of the country have none at all. In such circumstances, a team approach involving the child's pediatrician and a rheumatologist with experience in both adult and pediatric rheumatic disease provides optimal care for children with arthritis. Other important members of the team include physical therapists and occupational therapists.
What Are the Treatments?
The main goals of treatment are to preserve a high level of physical and social functioning and maintain a good quality of life. To achieve these goals, doctors recommend treatments to reduce swelling; maintain full movement in the affected joints; relieve pain; and identify, treat, and prevent complications. Most children with JRA need medication and physical therapy to reach these goals.
Several types of medication are available to treat JRA:
- Nonsteroidal anti-inflammatory drugs (NSAIDs)--Aspirin, ibuprofen (Motrin, Advil, Nuprin),* and naproxen or naproxen sodium (Naprosyn, Aleve) are examples of NSAIDs. They often are the first type of medication used. Most doctors do not treat children with aspirin because of the possibility that it will cause bleeding problems, stomach upset, liver problems, or Reye's syndrome. But for some children, aspirin in the correct dose (measured by blood test) can control JRA symptoms effectively with few serious side effects.
If the doctor prefers not to use aspirin, other NSAIDs are available. For example, in addition to those mentioned above, diclofenac and tolmetin are available with a doctor's prescription. Studies show that these medications are as effective as aspirin with fewer side effects. An upset stomach is the most common complaint. Any side effects should be reported to the doctor, who may change the type or amount of medication.
- Disease-modifying anti-rheumatic drugs (DMARDs)--If NSAIDs do not relieve symptoms of JRA, the doctor is likely to prescribe this type of medication. DMARDs slow the progression of JRA, but because they take weeks or months to relieve symptoms, they often are taken with an NSAID. Various types of DMARDs are available. Doctors are likely to use one type of DMARD, methotrexate, for children with JRA.
Researchers have learned that methotrexate is safe and effective for some children with rheumatoid arthritis whose symptoms are not relieved by other medications. Because only small doses of methotrexate are needed to relieve arthritis symptoms, potentially dangerous side effects rarely occur. The most serious complication is liver damage, but it can be avoided with regular blood screening tests and doctor followup. Careful monitoring for side effects is important for people taking methotrexate. When side effects are noticed early, the doctor can reduce the dose and eliminate side effects.
- Corticosteroids--In children with very severe JRA, stronger medicines may be needed to stop serious symptoms such as inflammation of the sac around the heart (pericarditis). Corticosteroids like prednisone may be added to the treatment plan to control severe symptoms. This medication can be given either intravenously (directly into the vein) or by mouth. Corticosteroids can interfere with a child's normal growth and can cause other side effects, such as a round face, weakened bones, and increased susceptibility to infections. Once the medication controls severe symptoms, the doctor may reduce the dose gradually and eventually stop it completely. Because it can be dangerous to stop taking corticosteroids suddenly, it is important that the patient carefully follow the doctor's instructions about how to take or reduce the dose.
- Biologic agents--Children with polyarticular JRA who have gotten little relief from other drugs may be given one of a new class of drug treatments called "biologic agents." Etanercept (Enbrel), for example, is such an agent. It blocks the actions of tumor necrosis factor, a naturally occurring protein in the body that helps cause inflammation.
- Physical therapy--Exercise is an important part of a child's treatment plan. It can help to maintain muscle tone and preserve and recover the range of motion of the joints. A physiatrist (rehabilitation specialist) or a physical therapist can design an appropriate exercise program for a person with JRA. The specialist also may recommend using splints and other devices to help maintain normal bone and joint growth.
- Complementary and alternative medicine--Many adults seek alternative ways of treating arthritis, such as special diets or supplements. Although these methods may not be harmful in and of themselves, no research to date shows that they help. Some people have tried acupuncture, in which thin needles are inserted at specific points in the body. Others have tried glucosamine and chondroitin sulfate, two natural substances found in and around cartilage cells, for osteoarthritis of the knee.
Some alternative or complementary approaches may help a child to cope with or reduce some of the stress of living with a chronic illness. If the doctor feels the approach has value and will not harm the child, it can be incorporated into the treatment plan. However, it is important not to neglect regular health care or treatment of serious symptoms.
How Can the Family Help a Child Live Well With JRA?
JRA affects the entire family who must cope with the special challenges of this disease. JRA can strain a child's participation in social and after-school activities and make school work more difficult. There are several things that family members can do to help the child do well physically and emotionally.
- Treat the child as normally as possible.
- Ensure that the child receives appropriate medical care and follows the doctor's instructions. Many treatment options are available, and because JRA is different in each child, what works for one may not work for another. If the medications that the doctor prescribes do not relieve symptoms or if they cause unpleasant side effects, patients and parents should discuss other choices with their doctor. A person with JRA can be more active when symptoms are controlled.
- Encourage exercise and physical therapy for the child. For many young people, exercise and physical therapy play important roles in managing JRA. Parents can arrange for children to participate in activities that the doctor recommends. During symptom-free periods, many doctors suggest playing team sports or doing other activities to help keep the joints strong and flexible and to provide play time with other children and encourage appropriate social development.
- Work closely with the school to develop a suitable lesson plan for the child and to educate the teacher and the child's classmates about JRA. (See the end of this booklet for information about Kids on the Block, Inc., a program that uses puppets to illustrate how juvenile arthritis can affect school, sports, friends, and family.) Some children with JRA may be absent from school for prolonged periods and need to have the teacher send assignments home. Some minor changes such as an extra set of books, or leaving class a few minutes early to get to the next class on time can be a great help. With proper attention, most children progress normally through school.
- Explain to the child that getting JRA is nobody's fault. Some children believe that JRA is a punishment for something they did.
- Consider joining a support group. The American Juvenile Arthritis Organization runs support groups for people with JRA and their families. Support group meetings provide the chance to talk to other young people and parents of children with JRA and may help a child and the family cope with the condition.
- Work with therapists or social workers to adapt more easily to the lifestyle change JRA may bring.
Do Children With Juvenile Rheumatoid Arthritis Have To Limit Activities?
Although pain sometimes limits physical activity, exercise is important to reduce the symptoms of JRA and maintain function and range of motion of the joints. Most children with JRA can take part fully in physical activities and sports when their symptoms are under control. During a disease flare-up, however, the doctor may advise limiting certain activities depending on the joints involved. Once the flare-up is over, a child can start regular activities again.
Swimming is particularly useful because it uses many joints and muscles without putting weight on the joints. A doctor or physical therapist can recommend exercises and activities.
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