Kids Get Arthritis Too!

Arthritis Care for Kids (from DukeHealth.org)

Children’s Pain Often Goes Undertreated:
Many people think of arthritis as a disease of aging, but it's surprisingly common in children as well. The most common form, Juvenile Rheumatoid Arthritis (JRA), affects an estimated 150,000 children in the United States, causing pain, stiffness, swelling, and even growth disorders.

Children with arthritis tend to complain less than adults about their symptoms, however--and that can lead to subpar treatment, says Laura Schanberg, MD, co-chief of Duke's division of pediatric rheumatology.

In a recent Duke study, children with JRA kept diaries reporting their daily levels of pain, activity, and stress. "One thing that became clear is that children with arthritis, even when treated, have more pain than we realize," says Schanberg. "In clinic children typically report low levels of pain. In their diaries the children said they experienced pain on more than 70 percent of the days, and 31 percent said their pain was severe."

The study also found that even low levels of pain (2 or 3 on a scale of 10) caused children to cut back on social activities. "Adults tell physicians about their symptoms and complaints," Schanberg says. "Children just stop doing things that hurt. And because they say they're fine they often go undertreated."

New Medications Offer Relief:
As three of the four pediatric rheumatologists in the Carolinas, Schanberg and her colleagues Deborah Kredich, MD, and Egla Rabinovich, MD, are devoted to making sure children with arthritis receive the tailored treatment they need. One of their first priorities is to bring the child's pain and other symptoms under control--and new medications are making that much easier, says Schanberg.

In addition to NSAIDS such as ibuprofen and disease-modifying anti-inflammatory drugs such as methotrexate, the team now uses newer biologic agents, in particular tumor necrosis factor-blockers such as etanercept, infliximab, and adalimumab. Duke has used infliximab to treat JRA based on the drug's effectiveness in adults, and found it particularly successful in treating inflammatory eye disease, a common condition in children with arthritis.

Trials of other promising biologic agents for systemic-onset JRA--a highly inflammatory form that often causes rash and fevers--will begin in the next few years, Schanberg says.

Reducing Stress Is Critical:
Since their research has shown that JRA flare-ups may frequently be mood- and stress-related, treatment combining medication and stress reduction may be most effective in managing the condition.

"We recommend counseling, pain-coping skills training, and relaxation techniques to help children deal with 'daily-hassle' things that come up," says Schanberg. "We also pay attention to the child's school and family situation, calling the schools when needed and helping parents adjust to their child's illness. As a specialized arthritis center for children, we can really walk with a child every step of the way."

Kids and teens treated with drugs called tumor necrosis factor (TNF) blockers may be at an increased risk for lymphoma and other cancers, according to the US Food and Drug Administration (FDA), which is updating black box warnings for the drugs.

The FDA's decision is based on a yearlong review of the childhood cancer risk associated with TNF blocker drugs, which are used to treat rheumatoid arthritis, Crohn's disease, and other inflammatory diseases.

These drugs* -- which include adalimumab (Humira), etanercept (Enbrel), certolizumab pegol (Cimzia), golimumab (Simponi), and infliximab (Remicade) -- work by blocking tumor necrosis factor, a protein that's overproduced in some immune system diseases. The FDA started investigating the drugs in 2008 after evidence suggested that interfering with TNF may also increase the risk of some life-threatening infections and certain cancers.

The FDA’s safety review and analysis is based on 48 cases of malignancies – including lymphoma and other cancers – in children and adolescents treated with TNF inhibitors. This analysis found children and teens taking these drugs had an increased risk of cancer, with cases occurring on average after 30 months of treatment. About half were lymphomas, and some were fatal.

TNF therapies are improving the lives of millions of Americans and they are important treatment options for people with inflammatory forms of arthritis, such as JIA. The Arthritis Foundation concurs that additional data and further analysis are needed, however, to determine whether malignancies are a direct result of TNF blocker use. Whether treated with biologics or not, some types of arthritis may increase the risk for developing cancer. Other drug and non-drug factors that may contribute to this risk include suppression of the immune system, use of multiple immunosuppressive therapies, long-term drug treatment and higher dosages.

The FDA said it was working with TNF drug manufacturers, including Johnson & Johnson, Abbott, and Wyeth, to better understand the childhood cancer risk associated with these drugs.

If your child is taking or considering taking a TNF blocker, discuss the risks and potential benefits with your doctor.

Cancers in children often are hard to recognize. Parents should be sure that their children have regular medical check-ups and watch for any unusual signs or symptoms that do not go away. These may include:

• an unusual lump or swelling
• unexplained paleness and loss of energy easy bruising
• an ongoing pain in one area of the body
• limping
• unexplained fever or illness that doesn't go away
• frequent headaches, often with vomiting
• sudden eye or vision changes
• sudden unexplained weight loss

These symptoms are more likely to be caused by something other than cancer, but they should be checked out by your child’s doctor. For more specific information on possible symptoms, see "What are the types of childhood cancers?"

The concern about adverse side effects with TNF blockers further emphasizes the need for a national registry for patients with JIA as well as a network of collaborating treatment centers to ensure that full information can be acquired about the risks and benefits of arthritis therapies. The Arthritis Foundation is working toward this goal through its support for the Childhood Arthritis & Rheumatology Research Alliance (CARRA). CARRA is a North American organization of pediatric rheumatologists who have joined together to answer critical clinical research questions and determine the best possible treatment options for childhood arthritis and other childhood rheumatic diseases.

For more information about TNF blockers and the new black box warnings, visit the FDA's web site.

* The FDA’s analysis on pediatric malignancies included TNF inhibitors Remicade and Enbrel. It did not include Humira, which rarely is used to treat children, nor Cimzia or Simponi, which are not yet approved for use in children.

I came across this beautiful poem on another blog and was so touched by it. I felt like it was written about my thoughts on Karissa's arthritis.