Rheumatoid arthritis, or RA, is a form of inflammatory arthritis and an autoimmune disease. For reasons no one fully understands, in rheumatoid arthritis, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that’s systemic – meaning it can occur throughout the body.
Rheumatoid arthritis is a chronic disease, meaning it can’t be cured. Most people with RA experience intermittent bouts of intense disease activity, called flares. In some people the disease is continuously active and gets worse over time. Others enjoy long periods of remission – no disease activity or symptoms at all. Evidence shows that early diagnosis and aggressive treatment to put the disease into remission is the best means of avoiding joint destruction, organ damage and disability.
Signs and Symptoms
The symptoms and course of rheumatoid arthritis vary from person to person and can change on a daily basis. Your joints may feel warm to the touch and you might notice a decreased range of motion, as well as inflammation, swelling and pain in the areas around the affected joints. Rheumatoid arthritis is symmetrical, meaning if a joint on one side of the body is affected, the corresponding joint on the other side of the body is also involved. Because the inflammation is systemic, you’re likely to feel fatigued and you may become anemic, lose your appetite and run a low-grade fever.
Rheumatoid arthritis may affect many different joints and cause damage to cartilage, tendons and ligaments – it can even wear away the ends of your bones. One common outcome is joint deformity and disability. Some people with RA develop rheumatoid nodules; lumps of tissue that form under the skin, often over bony areas exposed to pressure. These occur most often around the elbows but can be found elsewhere on the body, such as on the fingers, over the spine or on the heels. Over time, the inflammation that characterizes RA can also affect numerous organs and internal systems.
An estimated 1.3 million people in the United States have RA – that’s almost 1 percent of the nation’s adult population. There are nearly three times as many women as men with the disease. In women, rheumatoid arthritis most commonly begins between the ages of 30 and 60. It often occurs later in life for men. However, even older teens and people in their 20s can get RA. As many as 300,000 children are diagnosed with a distinct but related form of inflammatory arthritis called juvenile arthritis. The disease occurs in all ethnic groups and in every part of the world.
What Causes RA?
The cause of rheumatoid arthritis is not yet known. Most scientists agree that a combination of genetic and environmental factors is responsible. Researchers have identified genetic markers that cause a tenfold greater probability of developing rheumatoid arthritis. These genes are associated with the immune system, chronic inflammation or the development and progression of RA. Still, not all people with these genes develop rheumatoid arthritis and not all people with the disease have these genes.
Researchers are also investigating infectious agents, such as bacteria or viruses, which may trigger the disease in someone with a genetic propensity for it. Other suspects include female hormones (70 percent of people with RA are women) and the body’s response to stressful events such as physical or emotional trauma. Smoking may also play a role – it not only boosts the risk of developing RA among people with a specific gene, it can also increase the disease’s severity and reduce the effectiveness of treatment.
Research that deepens our understanding of these genes and other factors that may lead to the development of RA is ongoing.
How Do You Know It’s RA?
To diagnose rheumatoid arthritis, your physician will take a medical history and perform a physical examination. The doctor will look for certain features of RA, including swelling, warmth and limited motion in joints throughout your body, as well as nodules or lumps under the skin. Your doctor may also ask if you have experienced fatigue or an overall feeling of stiffness. The pattern of joints affected by arthritis can help distinguish rheumatoid arthritis from other conditions. Your physician should recommend certain blood tests to identify antibodies, levels of inflammation and other markers that aid diagnosis and assessments. He’ll likely call for X-rays to determine if you have bone loss at the edges of joints – called erosions – combined with loss of joint cartilage.
Although there is no cure for RA, highly effective treatments exist. Once you have a diagnosis, you should begin treatment right away to slow disease progression and lower chances for joint damage.
Medications used to treat rheumatoid arthritis can be divided into two groups: those that help relieve symptoms and reduce inflammation (nonsteroidal anti-inflammatory drugs and corticosteroids), and those that can modify the disease or put it in remission (disease-modifying antirheumatic drugs and biologic agents). Your physician may recommend using two or more together. Some medications affect the immune system or have other side effects, making careful monitoring very important. Research on new medications is ongoing, with an influx of new drugs into the pipeline.
Lifestyle Changes Can Help
Engaging in moderate physical activity on a regular basis helps decrease fatigue, strengthen muscles and bones, increase flexibility and stamina, and improves your general sense of well-being. When your symptoms are under control, work with your health-care team to develop a full exercise program that includes stretching for joint flexibility and range of motion, strength training for joint support and aerobic (cardiovascular) exercise for overall health, weight control, muscle strength and energy level.
Overall, eat a balanced, healthy diet. Although scientific studies have not proved that diet changes either cause or relieve symptoms of rheumatoid arthritis, studies do show that a wide variety of foods, from strawberries to olives to fish, can help reduce RA inflammation, while selenium and vitamin D may have preventative effects.
Practice self-management techniques by learning all you can about the disease and knowing what to expect. Discuss it with your family, with your physicians and with other health professionals involved in your care. Contact your local Arthritis Foundation office to find out about educational events and the Life Improvement Series of programs, including aquatic exercise and tai chi.
Years ago, doctors started rheumatoid arthritis treatment with drugs that primarily addressed symptoms, gradually working their way up to DMARDs – disease-modifying antirheumatic drugs, a class of medications that address the root causes of immune system malfunction, often at the cellular level.
Today, doctors believe there’s an early window of opportunity to treat rheumatoid arthritis before the onset of irreparable joint damage. New RA patients are highly likely to begin their treatment regimen with a DMARD. Studies show that taking action quickly may even put the disease into remission.
If you’re reading this, chances are good you’ve already been diagnosed with rheumatoid arthritis and are seeing a rheumatologist who will discuss your treatment.
In an effort to quickly get people with symptoms of joint inflammation to a rheumatologist, or arthritis specialist, for diagnosis and critical early treatment, the Arthritis Foundation has launched the Inflammatory Arthritis Initiative.
Sometimes called degenerative joint disease or degenerative arthritis, osteoarthritis (OA) is the most common chronic condition of the joints, affecting approximately 33 million Americans. Although it occurs in people of all ages, osteoarthritis is most common in people older than 65.
In osteoarthritis, there is a breakdown in the cartilage covering the ends of bones where they meet to form a joint and allow movement. As the cartilage wears away, the bones become exposed and rub against each other. The deterioration of cartilage also affects the shape and makeup of the joint so that it no longer functions smoothly. You may notice a limp when you walk, or you may have trouble going up and down stairs because those movements put additional stress on the joint.
Other problems can occur inside the joint as cartilage breakdown affects the joint components. Fragments of bone or cartilage may float in joint fluid, causing irritation and pain. Spurs, or osteophytes, can develop on the ends of the bones, damaging surrounding tissues and causing pain. Fluid inside the joint may not have enough of a substance called hyaluronan, which may affect the joint’s ability to absorb shock. And although inflammation is not a main symptom of osteoarthritis, it can occur in the joint lining in response to the cartilage breakdown.
What are the symptoms of osteoarthritis?
Symptoms of osteoarthritis vary, depending on which joints are affected and how severely they are affected. However, the most common symptoms are stiffness, particularly first thing in the morning or after resting, and pain. The most commonly affected joints are the lower back, hips, knees and feet. When those joints are affected you may have difficulty with such activities as walking, climbing stairs and lifting objects.
Other commonly affected joints are the neck and fingers, including the thumb base. When finger and hand joints are affected, osteoarthritis can make it difficult to grasp and hold objects, such as a pencil, or to do delicate tasks, such as needlework.
What causes osteoarthritis?
Like other chronic conditions, osteoarthritis has no single, specific cause. Instead, there are several factors involved in the disease, including heredity and lifestyle. The following factors may contribute to osteoarthritis:
Genes: One possibility is that certain people may have a defect in the gene responsible for the body’s production of collagen, the protein that makes up cartilage. This somewhat rare genetic defect might lead to abnormally weak cartilage that wears down after just a few decades of normal activity, causing osteoarthritis as early as age 20.
Other genetically based traits may result in slight defects in the way the bones and joints fit together so that cartilage wears away faster than usual. The inherited trait known as joint laxity, or double-jointedness, in which the joints bend farther than the usual angles, may also increase the risk for osteoarthritis. Simply inheriting a gene that makes you more susceptible to osteoarthritis doesn’t mean you will get the disease, however. Your lifestyle – that is, the way you eat, exercise, sleep and whether you have bad habits such as smoking – has a tremendous impact on whether you will develop OA.
Weight: Your hips and knees bear the brunt of your body’s weight. Being overweight puts additional pressure on these joints. For every pound you gain, your knees gain three pounds of added stress; for your hips, each additional pound translates into six times the pressure on these joints. Many years of carrying extra pounds can cause the cartilage that cushions your joints tends to break down. Obesity may lead to osteoarthritis on its own, or it may combine with other factors such as genetic susceptibility to produce the disease and worsen its symptoms.
Some research has shown a link between being overweight and having an increased risk of osteoarthritis in the hands, but the reason for that connection is unclear. One theory is that excess fat tissue itself produces inflammatory chemicals that travel throughout the body and are capable of causing damage in places other than weight-bearing joints.
Injury and overuse: Sometimes repetitive movements or serious injuries to joints (such as a fracture or surgery) can lead to osteoarthritis down the road. Some full-time athletes, for example, repeatedly damage certain joints, tendons and ligaments, which speeds cartilage breakdown. Even joints such as shoulders (which don’t bear much weight and are unlikely to have osteoarthritis) can develop the disease after injuries or repeated stressful activities.
The constant knee bending required by some types of work, such as landscaping, can make cartilage wear away more quickly than moderate use of those joints.
Others: Several other factors may contribute to osteoarthritis. These factors include other bone and joint disorders like rheumatoid arthritis and certain metabolic disorders such as hemochromatosis, which causes the body to absorb too much iron, or acromegaly, which causes the body to make too much growth hormone.
How Is Osteoarthritis Diagnosed?
The diagnosis of osteoarthritis begins with a medical history, or information about your health background. Because certain conditions can be inherited, your doctor will ask which conditions run in your family. Your doctor will also want to find out about the symptoms that prompted you to seek medical attention. Points your doctor may want to know before osteoarthritis is diagnosed:
• description of your symptoms
• details about when and how the pain or other symptoms began
• where you are feeling pain, stiffness or other symptoms
• how the symptoms are affecting you
• whether you have other medical problems that could be causing these symptoms
The next important part of the diagnostic process is the physical exam. During the exam your doctor will look at your joints and touch those you’ve described as painful. He or she will be looking for areas that are tender, painful or swollen as well as indications that the joints may be damaged.
To find out how arthritis is affecting your body, your doctor may ask you to stand up and move certain joints. This will show the range of motion in your joints or how well you can move each joint through its full capabilities. The doctor will examine the position and alignment of your neck and spine. He or she may ask you to walk around the office a bit to see how you are able to move your hips and knees.
The final part of the diagnosis of osteoarthritis may involve laboratory tests to confirm the diagnosis your doctor suspects based on your medical history and physical exam. Blood tests are usually not helpful in making a diagnosis; however, the following tests may help confirm a diagnosis of osteoarthritis:
Joint aspiration: For this laboratory test, your doctor will administer a local anesthetic, then insert a needle into the joint in order to withdraw fluid. The fluid is then examined for evidence of crystals or joint deterioration. This test can help rule out other medical conditions or other forms of arthritis.
X-ray: Imaging techniques like X-rays can show the physical effects of osteoarthritis to confirm the diagnosis. X-rays use radiation to penetrate the body’s soft tissues and show internal structures like bones. The images can show damage and other changes in cartilage and bones that can occur with osteoarthritis.
MRI: Magnetic resonance imaging (MRI) uses magnetic fields to produce an image of a specific area of the body. The test is more expensive than X-rays, but it does not involve the radiation risk of X-rays. And MRIs provide a two-dimensional view that offers better images of soft tissues, as cartilage, to detect early abnormalities typical of osteoarthritis.When should I see a doctor?
Most people have some joint aches and pains as they age, and often pain can be managed with over-the-counter medications and self-care techniques such as warm baths and cold packs, massaging the affected joint or resting it when pain is at its worst. But if self-care techniques don’t sufficiently relieve your pain, a doctor may be able to prescribe other medications or treatments that will help. It’s also important to see your doctor if you experience symptoms that might indicate your joint pain is not from osteoarthritis but a problem that requires more immediate medical attention. These symptoms include:
• Sudden swelling, warmth, redness along with pain in any joint(s).
• Joint pain accompanied by a fever and/or rash
• Severe pain that prevents you from using the joint
How Will Osteoarthritis Affect You?
After years of increasing pain and stiffness in your joints, after ordinary tasks like making your bed in the morning had become almost impossible, you finally spoke to your doctor. When you heard that your problem had a name – osteoarthritis, or OA – you weren’t surprised. In fact, you were a bit relieved.
But now you want to know what OA will do to your body, to your lifestyle, and how this disease may affect your future. You want to know what you can do to make yourself feel better, and to keep your OA from getting worse.
Where Does Osteoarthritis Strike?
OA affects joints, places where bones come together and move in various directions. OA typically affects the following joints:
Neck Spine Hips Hands Knees Ankles
Other joints may be affected as well. Just because you have OA in one particular joint doesn’t mean you’ll develop it in others. But osteoarthritis symptoms may worsen – increasing your pain and decreasing your ability to perform daily tasks – if you don’t address them with treatment and prevention strategies. Luckily, there are many osteoarthritis treatments available to manage pain and stiffness and improve flexibility. You are in charge of your OA prognosis.
What Happens in Osteoarthritis?
OA occurs when parts of a joint, including cartilage, bones, fluid or its membrane lining (synovium), change and break down, usually over years. Cartilage and joint fluid cushion and lubricate a joint, easing the motion of bones. When these joint components break down, movement becomes difficult or painful. In OA, joints can feel stiff. Each movement can be painful. Joints can swell, further hindering movement.
As OA worsens over time, bones may break down and develop growths called spurs. Bits of bone or cartilage may even chip off and float around in the joint cavity. Synovial fluid can diminish in amount or quality.
In the final stages of OA, cushioning cartilage erodes, inflaming the lining of your joint. As a result, chemicals called cytokines (inflammatory proteins) or enzymes are released, causing more pain, swelling and damage.
Managing Osteoarthritis Symptoms
Osteoarthritis, or OA, is a common disease affecting as many as 33 million Americans, causing pain, stiffness and swelling in joints. OA reduces your joints’ mobility, interfering with your ability to work and live your life normally.
There is no cure for OA at this time. It will progress and damage your joints further unless you intervene now. Luckily, there are many ways to manage OA symptoms.
As a person with osteoarthritis, you’ll need to take a long-term view of your health. OA can’t be bested in one day or with a single pill. You’ll have to take a comprehensive approach to your health.
You have a team to help you, including your arthritis doctor and other health-care professionals, your family and friends, and your local Arthritis Foundation office. But you are the manager of that team. You must make a commitment to making healthy changes and choices and sticking with the OA management plan that you and your doctor will devise.
Top Tactics for Tackling OA
Your plan for taking on OA should include:
Managing OA symptoms, like pain, stiffness and swelling Improving joint mobility and flexibility Keeping your weight in check Maintaining better fitness through physical activity
That sounds like a big project, but start by slowly making changes to your current routine, not trying everything all at once. Here are tips for managing your OA, and resources to help you.
Stretch Yourself. Slow, gentle stretching of joints may improve flexibility, lessen stiffness and reduce pain. Morning is a great time to stretch to get joints ready for the day’s tasks. The Arthritis Foundation offers stretching routines, including yoga- and tai chi-based moves, approved for people with OA on DVD or in live classes in your area. First, speak to your doctor to gauge your level of fitness and any special considerations.
Get Moving. Physical activity is a proven way to manage OA symptoms. Before you groan about hating exercise, just pledge to progress from dedicated couch-sitter to regular mover. Simple activities like walking around the neighborhood or taking a fun, easy land or water exercise class approved for people with OA can reduce pain and extra weight, which only worsens OA.
What Is Juvenile Idiopathic Arthritis?
Arthritis in children, unfortunately, has a lengthy history. Physicians have been documenting cases of pain and inflammation for more than a century, dating back to the mid-1800s. Along with juvenile rheumatoid arthritis, they also have described symptoms indicative of other types of rheumatic disease, including lupus and scleroderma.
Still, chronic arthritis in children didn’t receive significant medical attention until the years following the discovery of penicillin. As the antibiotic’s usage became widespread in the mid-1900s, acute rheumatic fever was nearly wiped out in areas of the developed world, including Europe and North America.
This change shifted the medical community's focus to those children with chronic inflammation. Hospitals in the United States, initially built to treat children with rheumatic fever, began to shift their clinical attention. By the 1970s, the field of pediatric rheumatology had become increasingly more visible, with the establishment of a pediatric arm of the American College of Rheumatology, the professional association of rheumatologists, and the first pediatric rheumatology conference in the United States.
The field of pediatric rheumatology – and the understanding of rheumatic diseases in children it has helped foster – continue to evolve. An appropriate expression of the fluid nature of pediatric rheumatology, and the complexities of the illnesses the field encompasses, is the ongoing revision of the language used to describe various types of arthritis.
Juvenile arthritis, in short, is no more than a catchall term, language sufficiently broad to describe the various autoimmune and inflammatory conditions that can develop before age 16. The word “arthritis” literally means joint inflammation: arth (joint) and itis (inflammation). In recent years, though, researchers have developed a more sophisticated understanding of the differences between specific types of arthritis, and the terminology is shifting as a result.
Researchers and physicians also have been fine tuning existing diagnoses and the related terms that describe them. A notable example is juvenile rheumatoid arthritis (JRA), the most common form of juvenile arthritis. The term JRA dates back more than 50 years in North America. Within the broad category of JRA, researchers have traditionally classified a child’s diagnosis primarily based on the number of joints involved. Children with arthritis in relatively few joints, four or less, were described as having pauciarticular arthritis. Children with a larger number of involved joints were diagnosed with the polyarticular form. But you may have noticed another term – juvenile idiopathic arthritis – if you’ve been reading the latest studies or have changed physicians recently.
The term “JRA” has fallen out of favor internationally for a number of reasons. For one thing, juvenile rheumatoid arthritis is not – as the term implies – simply a pint-sized replica of the condition that affects adults. It’s believed that only about 10 percent of children have a disease that closely mirrors rheumatoid arthritis in adults. Over time, researchers have concluded that the JRA category was drawn too narrowly and should include some related diagnoses, such as ankylosing spondylitis.
So a new set of criteria has been hammered out, along with a new moniker: juvenile idiopathic arthritis – idiopathic means "of unknown origin.” The term, first proposed by the International League of Associations for Rheumatology, isn't exactly interchangeable with juvenile rheumatoid arthritis because it includes diagnoses that weren’t part of the previous JRA definition.
Juvenile Idiopathic Arthritis (JIA)
Considered the most common form of arthritis, juvenile idiopathic arthritis (JIA) begins before age 16 and involves swelling in one or more joints lasting at least six weeks. JIA, which includes several types of arthritis previously known as juvenile rheumatoid arthritis, may include a variety of symptoms, such as muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns.
In addition to watching for symptoms for at least six weeks, your child’s doctor will wait to see how her symptoms unfold during the first six months after onset. As with the previous JRA criteria, the number of joints affected during those first six months determines the diagnosis. In addition, the JIA criteria also rely on other results, such as those from the rheumatoid factor blood test, to help further stratify patients.
Based on her symptoms, your child may be diagnosed with one of the following categories of JIA:
Oligoarthritis: Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.
If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.
Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.
Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.
Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.
The JIA criteria also sub-divides children with polyarthritis into two categories, those who test positive for rheumatoid factor (RF) – an antibody found in the blood – and those who don’t. The RF-positive form of the disease usually emerges in the elementary school years or later. It’s the type most similar to adult rheumatoid arthritis. Children with RF-positive polyarthritis are typically more vulnerable to severe disease and related joint erosion than those who test negative for rheumatoid factor.
Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.
The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.
Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.
The condition can influence your child’s growth and appetite, making good nutrition a high priority. But the course of the disease, including the number of joints involved, can be highly variable and individual. Only over time will your child’s doctor have a better sense of the challenges she faces.
Enthesitis-related: This type, which wasn’t included under the JRA criteria, involves inflammation of the entheses, sites where tendons attach to the bone. Boys are more often diagnosed. The arthritis can be mild, involving four or fewer joints in roughly half of cases. In some children, arthritis can move to the spine. Frequently, they test positive for the HLA-B27 gene.
Over time, your child may develop one of the various conditions also known as juvenile spondyloarthropathies, which may but do not necessarily affect the spine. Some of those diseases include: juvenile ankylosing spondylitis, arthritis associated with inflammatory bowel disease and reactive arthritis.
Juvenile Psoriatic Arthritis: In this form of arthritis, the skin condition called psoriasis may precede or follow the symptoms of psoriatic arthritis, sometimes by years. The rash may appear as a scaly red rash, emerging behind the ears or on the eye lids, elbows, knees or scalp. Your child may have a family history of psoriasis. Another common sign: a pitting or unusual ridging on the fingernails.
Other: Any arthritis of unknown cause, with symptoms continuing at least six weeks, that doesn’t meet criteria for any one type of JIA or involves symptoms than span two or more types.
JA Treatment Options:
Methotrexate is one of the most commonly used DMARDs for kids with arthritis. What should you know?
Since its introduction for juvenile arthritis over a quarter-century ago, methotrexate has significantly improved the lives for countless kids with the disease. But it isn't without risks and it doesn’t work for every child. If your child is taking methotrexate or her doctor has recommended it, here are nine things you need to know about this treatment mainstay.
1. It’s not a quick fix. If your child is just starting methotrexate, don’t expect to see relief with the first dose or two – or three. Methotrexate is a disease-modifying anti-rheumatic drug (DMARD), often referred to as a slow-acting anti-rheumatic drug (SAARD) for a reason. While methotrexate usually begins to show effects after a few weeks, it could be six to 12 weeks before you notice any significant benefit, says Thomas J.A. Lehman, MD, chief of pediatric rheumatology at the Hospital for Special Surgery in New York City.
In the meantime, your child’s doctor will likely prescribe other medications – including a non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Motrin) or naproxen (Naprosyn), or possibly a corticosteroid such as prednisone – to ease inflammation while the drug is taking effect. Once methotrexate takes effects, your child’s doctor will likely wean her off corticosteroids, but NSAIDs may be continued.
2. Regular monitoring is crucial. Despite its benefits, methotrexate carries rare but real risks of potentially serious side effects including liver problems and, less commonly, low blood cell counts or lung problems. Regular blood tests can help your child’s doctor monitor the effects of methotrexate and adjust the dose or discontinue the drug if necessary.
3. It must be taken with folic acid. If you aren’t already giving your child folic acid supplements, reconsider. Folic acid is the synthetic form of folate, a B vitamin your child needs. Methotrexate interferes with the body’s ability to use folate and, over time, can lead to depletion of folate stores. This can cause symptoms similar to folate deficiency including diarrhea, loss of appetite, mouth sores, or mild hair shedding. Folic acid supplements are your child’s best defense against these side effects and there aren’t risks with taking a supplemental amount. Dr. Lehman recommends 1 mg daily.
4. Taking with food doesn’t help the nausea. Many children find nausea to be the most troubling side effect of methotrexate, says Dr. Lehman. Unfortunately, taking the drug with food or milk – as advised for some other arthritis medications – doesn’t help. That’s because methotrexate-related nausea is due not to stomach irritation but to the stimulation of a receptor in the brain that causes nausea, he says. If methotrexate makes your child sick, ask your doctor about prescribing ondansetron (Zofran), a drug that blocks the signal in the brain that causes nausea and vomiting.
5. Shots have benefits over pills. While both forms of methotrexate provide similar results, the injection has some benefits – mainly consistency. “You always know with an injection what becomes available to the body, while the amount of an oral dose that becomes available depends on what is in the stomach and other factors,” says Dr. Lehman. At high doses, methotrexate by injection may also be safer for the liver because it is absorbed and distributed through the circulation before it reaches the liver, whereas pills are digested, enter the circulation through blood vessels draining the stomach and intestines and then go directly to the liver.
6. Methotrexate is used with other drugs. When methotrexate doesn’t work as well as expected, doctors sometimes add another DMARD such as sulfasalazine (Azulfidine), hydroxychloroquine (Plaquenil), leflunomide (Arava), azathioprine (Imuran), cyclosporine (Neoral) as well as the newer biologic response modifiers (biologics) a subset of DMARDs. While there is less research to support methotrexate combos in children, recent studies have shown benefits of methotrexate in combination with one of several other drugs including etanercept (Enbrel), infliximab (Remicade) and adalimumab (Humira) for JA.
7. The injection is “drinkable.” If your child’s doctor has prescribed oral methotrexate and she has trouble swallowing pills, ask the doctor about prescribing the injectable liquid, which can also be taken orally. While the medication has to be measured into a syringe (slightly more work for parents), it goes down easier than a pill – and it costs less.
8. Alcohol is off limits. Taking methotrexate with alcohol increases the risk of liver damage. Although you may not consider this an issue for children, studies show that alcohol use among teens – and even preteens – is prevalent. “Children and teenagers must be warned about the risks,” says Dr. Lehman. “And even then, parents of all children must realize they may be under significant peer pressure to drink.” If you have any reason to suspect your child is drinking, speak to her doctor about a change of medication.
9. It doesn’t work for all kids. “Probably two-thirds of children with JIA get a significant benefit from methotrexate,” says Dr. Lehman. How do you know if your child will be among those two-thirds – or the approximately one-third that doesn’t get significant benefit? That’s a question researchers are trying to answer, and a recent study offers some clues.
Juvenile Idiopathic Arthritis Registry in the WorksFederal funding boosts efforts to track drug side effects and establish treatment benchmarks.
Parents of children with arthritis know the dilemma all too well. While biologic response modifiers offer unparalleled benefits in the short term, they have the potential for unsettling long-term side effects. At least we think so – although biologics have been approved for use with kids since 1999, there’s no national database that tracks patients’ progress with the disease and their response to various medications.
Until now, that is. This summer saw the debut of a database specifically designed to gather such details. As the project’s principal investigator, Laura Schanberg, MD, co-chief of Duke University’s division of pediatric rheumatology, has overseen infrastructure development and rollout via institutions that are part of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a national network of pediatric rheumatology researchers.
Dr. Schanberg reports that CARRA-net, as the database is named, is up and running at six sites and adding more patients every week toward its initial goal of 20,000. At present, participation is open to kids with JIA, lupus, vasculitis, dermatomyositis, fibromyalgia, systemic scleroderma, localized scleroderma and sarcoidosis who are being treated at a CARRA-affiliated facility (most are university health care centers or pediatric health care facilities). Enrollment consists of filling out consent forms and questionnaires, and takes about 15 minutes, Dr. Schanberg says. Patient health information is entered into the database and updated every six months. The plan is to make participation available at all 60 CARRA sites nationwide, then to all pediatric rheumatologists nationwide, and then to non-specialists who, due to location wind up treating kids with rheumatic conditions.
That’s important because kids in many states may not have access to a pediatric rheumatologist, says Bernard Murphy, chair of the Arthritis Foundation’s Juvenile Arthritis Leadership Group, which directs the Juvenile Arthritis Alliance. “They’re likely to be treated by an adult rheumatologist or even a general practitioner – someone who may not be up to speed on the JA disease model and treatment options.”
As the leader of “open-mic” nights at JIA advocacy summits, during which parents are encouraged to share their concerns about biologics, specifically those known as tumor necrosis factor (TNF) inhibitors, Murphy says he’s come across one question time and again: Will this treatment shorten my child’s life expectancy or put them at risk of developing cancer?
CARRA-net is the first step toward answering that difficult question. “You get that diagnosis, and there will be a system in place that says ‘This is the best course of treatment that we know of based on the fact that we’ve been looking at kids over time who are on different therapies,’” says Amy Melnick, the Arthritis Foundation’s vice president of public policy. “There’s so much more potential to improve care when you can aggregate this data.”
Expanding the reach
The idea isn’t new, Melnick says. The FDA convened a public workshop that started the ball rolling in the spring of 2009.
Initial funding for CARRA-net came last year in the form of $7 million in stimulus funds from the National Institutes of Health. Prior to its development, pharmaceutical companies monitored patients who were taking their medications, but that tracking stopped once a patient changed therapies – something that happens quite often with arthritis patients of all ages.
Easing Your Child’s Joint PainHelp your child handle her achy joints.
Depending upon the joint involved, pain can reroute your child’s body mechanics in a variety of ways. A child with neck pain may be unable to look up, while another child with elbow or wrist pain may position joints differently, making it harder or even impossible – over time – to fully straighten them.
The solutions may be just as varied and include splints, therapeutic exercises or more informal daily modifications. Here's a head-to-toe guide to easing joint pain:
A Child with neck pain may struggle to look up or turn her head sideways. She’ll compensate by moving her shoulders or entire body rather than twisting their neck. Quite often, the surrounding muscles will hurt as much as the joints themselves.
Solutions: Place moist heat on her muscles to help them relax. Sleeping with a cervical pillow – or no pillow at all – also helps to alleviate neck pain. If she has a TV in her room, elevate it to encourage motion in the neck. Range-of-motion exercises also can help prevent loss of motion and decrease pain.
The mandible joint can be a frequent source of discomfort, making it painful to bite into a thick sandwich or an apple. Jaw pain is common on the side of the face or just in front of the ear.
Solutions: When your child experiences jaw pain, serve softer foods that require less force to eat, cut food into small bites and avoid chewing gum. Consult your child’s physical therapist about exercises that may relieve pain.
A child with elbow pain is more likely to keep the joint bent, holding it close to the body. It’s important to encourage her to straighten her elbow, as she may eventually lose the ability to do so if she continues to hold it in a protective position. Over time, holding any joint in a bent position may cause the muscles on that side to shorten.
Solutions: Try activities and exercises that encourage straightening, such as pushing away light objects or “pushing” pretend objects up to the ceiling.
A child with wrist pain typically holds her wrist curled in her lap. Raising it or making a fist becomes problematic.
Solutions: Therapists work on strengthening the muscles on the back and side of the arm. Splints are commonly used. A functional wrist splint may help your child perform daily tasks with less pain. Resting splints at night provide extra support and prevent deformity.
Children with finger pain may be unable to pick up small objects or have trouble writing because they tend to keep their fingers in a curled position.
Solutions: To ease pain, your child should use large crayons or pencils, or those with soft grip covers. An older child may prefer to type on a computer rather than hand write. Another option is to use a gel-type pen with ink that flows easily, to reduce resistance or dragging as she writes. Use play-dough, putty or a squishy ball to strengthen your child’s fingers.
When children have hip involvement, the extensor muscles become weaker than the opposing flexor muscles, pulling the hip forward so it becomes curled up.
Solutions: While watching television or reading, your child can lie on her stomach to stretch hips into extension after sitting flexed all day at school.
Knee involvement is common in arthritis. Once it becomes difficult to straighten the knee, your child may walk with a limp. Parents will notice that smaller children no longer can squat.
Solutions: When experiencing knee pain, your child should rest with the knee straight and the heel propped up. Young children may benefit from wearing a knee extension splint at night to keep the knee extended while sleeping. A therapist can work with the child to strengthen the quadriceps muscle.
Your child’s ankle can require some support if it becomes weak and painful.
Solutions: An in-shoe orthotic can support the structure of the foot to relieve pain when standing and walking. Exercises that stretch the calf muscles and strengthen the muscles that raise the toes can be helpful. Ask your child to perform ankle circles in the bath, using the feet to make letters of the alphabet or to spell secret messages.
When your child’s foot hurts, the pain is usually worse on the ball of the foot, making it harder to walk or raise the toes.
Solutions: A small pad, placed just behind the ball of the foot, will relieve pressure on the foot.