While many of us think of arthritis as a disease of the elderly, the truth is it can affect people of any age. In fact, there is a group of autoimmune and inflammatory conditions that affect children under 16 – which we group into a general term, juvenile arthritis (JA). July is Juvenile Arthritis Awareness Month, and so we thought we’d ackknowledge it by sharing some of the basic facts about JA, as well as some of our own insights for clinicians.
According to the Arthritis Foundation, juvenile arthritis (also known as pediatric rheumatic disease) affects nearly 300,000 children in the United States. Some types of juvenile arthritis affect the musculoskeletal system, but joint symptoms may be minor or non-existent. Juvenile arthritis can also involve the eyes, skin, muscles and gastrointestinal tract. Various types of juvenile arthritis share many common symptoms, like pain, joint swelling, redness and warmth, but each type of JA is distinct and has its own special concerns and symptoms.1
Great Family Website: Get easy-to-understand information for kids, parents and carers -- learn about JA, connect with other families, learn about cllinical trials and more -- at www.KidsGetArthritisToo.org
Types of Juvenile Arthritis
There are several conditions that fall under the JA umbrella, including:
- Juvenile idiopathic arthritis (JIA). Considered the most common form of juvenile arthritis, JIA includes six subtypes: oligoarthritis, polyarthritis, systemic, enthesitis-related, juvenile psoriatic arthritis or undifferentiated.
- Juvenile dermatomyositis. An inflammatory disease, juvenile dermatomyositis causes muscle weakness and a skin rash on the eyelids and knuckles.
- Juvenile lupus. Lupus is an autoimmune disease. The most common form is systemic lupus erythematosus, or SLE. Lupus can affect the joints, skin, kidneys, blood and other areas of the body.
- Juvenile scleroderma. Scleroderma, which literally means “hard skin,” describes a group of conditions that causes the skin to tighten and harden.
- Kawasaki disease. This disease causes blood-vessel inflammation that can lead to heart complications.
- Mixed connective tissue disease. This disease may include features of arthritis, lupus dermatomyositis and scleroderma, and is associated with very high levels of a particular antinuclear antibody called anti-RNP.
- Fibromyalgia. This chronic pain syndrome is an arthritis-related condition, which can cause stiffness and aching, along with fatigue, disrupted sleep and other symptoms. More common in girls, fibromyalgia is seldom diagnosed before puberty. 1
No known cause has been pinpointed for most forms of juvenile arthritis, nor is there evidence to suggest that toxins, foods or allergies cause children to develop JA. Some research points toward a genetic predisposition to juvenile arthritis, which means the combination of genes a child receives from his or her parents may cause the onset of JA when triggered by other factors.1
Traditionally, a child complaining of occasional achy joints was dismissed as having “growing pains,” a vague phenomenon believed to be the result of the natural growth process. Now, however, we know that symptoms of joint pain, swelling, stiffness, fatigue or illness may be early signals of a serious, inflammatory rheumatic disease that requires immediate medical treatment. 1 But, because individual symptoms may appear to be something more benign, it’s not easy to immediately reach a correct diagnosis; it may only be when a “constellation” of symptoms (as well as family history) are present that clinicians may realize JA is the underlying factor.
Common symptoms of JA include:
- Pain: Kids complain of pain in joints or muscles at times, particularly after a long day of strenuous activity. But a child with juvenile arthritis may complain of pain right after she wakes up in the morning or after a nap. Her knees, hands, feet, neck or jaw joints may be painful. Her pain may lessen as she starts moving for the day. Over-the-counter pain relief drugs like acetaminophen or ibuprofen may not help. Unlike pain caused by an injury or other illnesses, JA-related pain may develop slowly, and in joints on both sides of the body (both knees or both feet), rather than one single joint.
- Stiffness: A child with JA may have stiff joints, particularly in the morning. He may hold his arm or leg in the same position, or limp. A very young child may struggle to perform normal movements or activities he recently learned, like holding a spoon. JA-related stiffness may be worse right after he wakes up and improve as he starts moving.
- Swelling: Swelling or redness on the skin around painful joints is a sign of inflammation. A child may complain that a joint feels hot, or it may even feel warm to the touch. A child’s swelling may persist for several days, or come and go, and may affect her knees, hands and feet. Unlike swelling that happens right after a fall or injury during play, this symptom is a strong sign that she has juvenile arthritis.
- Fevers: While children commonly have fevers caused by ordinary infectious diseases like the flu, a child with JA may have frequent fevers accompanied by malaise or fatigue. These fevers don’t seem to happen along with the symptoms of respiratory or stomach infections. Fevers may come on suddenly, even at the same time of day, and then disappear after a short time.
- Rashes: Many forms of juvenile arthritis cause rashes on the skin. Many kids develop rashes and causes can range from poison ivy to eczema or even an allergic reaction to a drug. But faint, pink rashes that develop over knuckles, across the cheeks and bridge of the nose, or on the trunk, arms and legs, may signal a serious rheumatic disease. These rashes may not be itchy or oozing, and they may persist for days or weeks.
- Weight loss: Healthy, active children may be finicky about eating, refusing to eat because they say they’re not hungry or because they don’t like the food offered. Other children may overeat and gain weight. But if a child seems fatigued, lacks an appetite and is losing rather than gaining weight, it’s a sign that her problem could be juvenile arthritis.
- Eye problems: Eye infections like conjunctivitis (pinkeye) are relatively common in children, as they easily pass bacterial infections to each other during play or at school. But persistent eye redness, pain or blurred vision may be a sign of something more serious. Some forms of juvenile arthritis cause serious eye-related complications such as iritis, or inflammation of the iris and uveitis, inflammation of the eye's middle layer.
The goal of treatment is to relieve inflammation, control pain and improve the child’s quality of life. Most treatment plans involve a combination of medication, physical activity, eye care and healthy eating – and often involves a diverse, multidisciplinary team of clinicians. Also important is helping a child to understand self-care techniques – as well as helping them learn to cope with the psychological impacts of their “new normal.”
Treatment with Medications
- Nonsteroidal anti-inflammatory drugs (NSAIDs) (aspirin, ibuprofen, naproxen, and naproxen sodium), are often the first type of medication used. All NSAIDs work similarly by blocking substances called prostaglandins that contribute to inflammation and pain. However, each NSAID is a different chemical, and each has a slightly different effect on the body.2
- Disease-modifying antirheumatic drugs (DMARDs). If NSAIDs do not relieve symptoms of juvenile arthritis, clinicians may prescribe this type of medication. DMARDs slow the progression of juvenile arthritis, but because they may take weeks or months to relieve symptoms, they often are taken with an NSAID. Although many different types of DMARDs are available, one particular DMARD, methotrexate, is most likely to be used for children with juvenile arthritis Researchers have learned that methotrexate is safe and effective for some children with juvenile 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 follow-up. Careful monitoring for side effects is important for people taking methotrexate. When side effects are noticed early, the dose can be reduced to eliminate the side effects. 2
- Corticosteroids. In children with very severe juvenile arthritis, stronger medicines may be needed to stop serious symptoms such as inflammation of the sac around the heart (pericarditis). Corticosteroids such as 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 dose is reduced and eventually stopped. Because it can be dangerous to stop taking corticosteroids suddenly, it is important to carefully follow the medical instructions about how to take or reduce the dose. For inflammation in one or just a few joints, injecting a corticosteroid compound into the affected joint or joints can often bring quick relief without the systemic side effects of oral or intravenous medication. 2
- Biologic agents. Children with juvenile arthritis who have received little relief from other drugs may be given one of a newer class of drug treatments called biologic response modifiers, or biologic agents. Tumor necrosis factor (TNF) inhibitors work by blocking the actions of TNF, a naturally occurring protein in the body that helps cause inflammation. Other biologic agents block other inflammatory proteins such as interleukin-1 or immune cells called T cells. Different biologics tend to work better for different subtypes of the disease. 2
Treatments without Medication
- Physical therapy. A regular, general exercise program 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 juvenile arthritis. The specialist also may recommend using splints and other devices to help maintain normal bone and joint growth. 2
- Complementary and alternative therapies. Many adults seek alternative ways of treating arthritis, such as special diets, supplements, acupuncture, massage, or even magnetic jewelry or mattress pads. Research shows that increasing numbers of children are using alternative and complementary therapies as well.
Although there is little research to support many alternative treatments, some people seem to benefit from them. If a child’s health team feels the approach has value and is not harmful, it can be incorporated into the treatment plan. However, it is important not to neglect regular health care or treatment of serious symptoms.2
Daily Life & Coping
Juvenile arthritis affects the entire family, all of whom must cope with the special challenges of this disease. JA can strain a child’s participation in social and after-school activities and make schoolwork more difficult. Among the things a family can do:
- Care: Try to ensure your medical team includes a pediatric rheumatologist, and try to visit him or her once or twice a year.
- Learn: Every kid’s disease is unique and it may take a while to get a unique treatment regime sorted that’s truly effective. Learn all you can about JA’s symptoms and your family’s options. For example the Arthritis Foundation has a helpful website -- KidsGetArthritisToo.org – that’s full of easy-to understand health information as well as research links, guides and webinars on variety of self-care and coping topics, family health event listings, even a directory of their 50 JA camps across the country. Additionally, The National Institutes of Health provides an easy to follow fact sheet for patients on JA: http://www.niams.nih.gov/Health_Info/Juv_Arthritis/juvenile_arthritis_ff...
- Get support: JA can be scary for parents and kids alike and requires much patience. Consider joining a support group, and work with social workers or therapists (cognitive, behavioral) when possible to help you all cope with the changes required in your lives.
- Normality: Treat your kid as normally as possible – help them to stay independent with normal family expectations and responsibilities.
- Exercise: More movement is better. Although pain sometimes limits a kid’s physical activity, exercise is important for reducing the symptoms of juvenile arthritis and maintaining function and range of motion of the joints. Most children with juvenile arthritis can take part fully in physical activities and selected sports when their symptoms are under control. During a disease flare, however, clinicians may advise limiting certain activities, depending on the joints involved. Once the flare is over, the child can start regular activities again. Swimming is particularly useful because it uses many joints and muscles without putting weight on the joints. 2
- School: Work with your child’s teachers and friends when possible to work around longer absences and keeping up with homework.
- Sleep: Getting plenty of sleep can be helpful.
- Talk to your child: Help them understand their condition is nobody’s fault and that you’re there for them.2
- Hope: Always remember that despite the challenges of JA, most kids can live healthy, normal, happy lives. Meanwhile, research into JA is busy on many fronts – from root causes to new medications, nutrition and even gene therapies.
As clinicians we appreciate that living with JA isn’t easy, but we also know that there are many roles to play in making things better for kids and their families, from the clinic to the lab to home. We thank those of you who are already engaged in this specialty – pediatricians, rheumatologists, NPs, PTs, researchers and more – and encourage our younger colleagues to consider pursuing a career in this vital but underserved area of healthcare. We dedicate this Awareness Month to all of you and the families you serve.