JIA, the most common form of arthritis that affects children and teens, is an autoimmune disorder in which a person’s body attacks the lining of the joints, called the synovial membranes, and causes inflammation. It can lead to pain, swelling, and joint deformity, as well as issues such as eye inflammation, enlarged organs, and other problems. Also called juvenile rheumatoid arthritis, JIA is the preferred term. There are several forms of JIA, including oligoarticular arthritis, which affects up to four joints in the body; polyarticular arthritis, which affects more than four joints; and systemic arthritis, which affects the entire body. All forms are considered idiopathic, meaning it’s unknown exactly what is causing the problem, according to the Arthritis Foundation. How much do you know about JIA? Here are five common myths and facts about JIA:
1. Myth: Arthritis Is Just for “Older People”
Fact: JIA is diagnosed in kids; it’s even got “juvenile” in its name. “But most children don’t outgrow it,” says Yukiko Kimura, MD, chief of the division of pediatric rheumatology at the Joseph M. Sanzari Children’s Hospital in Hackensack, New Jersey, and a professor of pediatrics at Hackensack Meridian School of Medicine in Nutley, New Jersey. According to the American Academy of Orthopaedic Surgeons, for a long time it was believed that many children would eventually outgrow juvenile arthritis. It is now known that the “majority of the children diagnosed with juvenile arthritis will continue to have active arthritis 10 years after diagnosis, unless they receive aggressive treatment.” JIA is diagnosed in children up to age 16, and it affects about 1 in 1,000 children, according to the Cleveland Clinic. It may go into remission, according to the Arthritis Foundation, or last a lifetime, depending on different factors.
2. Myth: JIA Is No Big Deal
Fact: Getting a proper diagnosis and the right treatment can prevent serious health problems. According to the Cleveland Clinic, such problems can include permanent joint damage; bone problems that inhibit a child’s growth; long-term arthritis and loss of function; eye problems that can lead to cataracts, glaucoma, or potential blindness; and inflammation of the heart or lungs. “JIA can cause a lifetime of chronic pain, limb deformity, joint disability, and poor growth, if not treated rapidly and properly,” says Dr. Kimura. Fortunately, newer medications that are now available have significantly improved patient outcomes and reduced pain, she adds. According to the Cleveland Clinic, treatment for JIA can help “relieve pain, reduce swelling, increase joint mobility and strength, and prevent joint damage and complications. Treatment generally includes medications and exercise.”
3. Myth: My Child’s Pediatrician Will Know What to Do
Fact: JIA is best managed by a pediatric specialist who understands arthritis and related immune-related diseases and conditions, says Kimura. That kind of practitioner will know about the latest drugs for treatment, which tend to be more effective. “Since newer treatments are available that work so well, it is important that children and adolescents who may have arthritis are seen as soon as possible by a trained pediatric rheumatologist,” she says. One way to find out about current research on JIA is to enroll in the Childhood Arthritis and Rheumatology Research Alliance Registry and Biorepository, which collects and analyzes information from patients with pediatric rheumatic conditions, in an effort to prevent and treat those diseases.
4. Myth: My Child Is Too Young to Be on JIA Medications
Fact: Children are not too young for JIA medications, says Kimura. “If they are not treated soon and properly, they can face a lifetime of health problems, which are a terrible reality.” She adds that “medications to treat JIA depend on the type of JIA, which is why proper diagnosis is so important.” The doctor will discuss which treatment is best for your child’s particular diagnosis, and common medications include methotrexate and newer biologic medications such as several TNF inhibitors, abatacept (Orencia), tocilizumab (Actemra), and JAK inhibitors such as tofacitinib (Xeljanz), says Kimura. Other newer medications to treat specific types of JIA include secukinumab (Cosentyx) and ustekinumab (Stelara). Systemic JIA can be treated with IL-1 inhibitors such as anakinra and canakinumab (Ilaris) as well as tocilizumab and other IL-6 inhibitors. “These newer medications have worked wonders to rapidly improve pain and other symptoms in JIA and have drastically improved outcomes in JIA in the past 10 to 20 years,” says Kimura. Kimura recently presented research at the American College of Rheumatology’s annual meeting that showed that people with polyarticular JIA who began taking biologics and other newer medications early, within months of diagnosis, were more likely to show clinical remission of their JIA than those who waited longer to start treatment. Kimura’s study observed 297 people with the condition and followed up with them 12 months and two years after treatment began. After three years of treatment, of those who began taking a conventional disease-modifying antirheumatic drug and a biologic drug together early in their treatment plan, 67.1 percent reported reaching clinical remission of their JIA. In a group that began methotrexate monotherapy and then added a biologic drug after three months if needed, only 47.3 percent were in clinical remission. The study will continue to follow up with these subjects over a 10-year period. The side effects of these medications can vary and should be discussed with the treating rheumatologist, says Kimura. RELATED: ACR Updates Guidelines for Treatment of Juvenile Idiopathic Arthritis
5. Myth: I Can Easily Find a Doctor to Help My Child With JIA
Fact: Unfortunately, one of the reasons these myths persist is that “there is a terrible shortage of pediatric rheumatologists, substandard knowledge and training about JIA in medical schools, and not enough specialists to see these patients,” says Kimura. According to the Arthritis Foundation, there are only about 350 such specialists throughout the United States. If you live near a major city or academic medical center, you’ll likely have options, the Arthritis Foundation notes. But if not, you may need to drive to another town or even another state to see a pediatric rheumatologist or an adult rheumatologist who also treats kids. To find a pediatric rheumatologist:
Talk to parents of other kids who live with JIA; there are online support groups where you can meet them.Search the American College of Rheumatology’s online directory to look for a pediatric specialist.Ask your health insurer for a list of recommended or covered specialists in your area.Check in with your local office of the Arthritis Foundation and area medical centers.
It may be challenging, but getting a timely diagnosis and proper treatment is crucial when managing this condition.