Ever since 12-year-old Austin Hyde of Covington, Wash., was diagnosed with polyarticular arthritis at the age of 3, his parents and doctor have wanted one thing – for Austin’s arthritis to go away.
“I didn’t even know that kids could get arthritis,” recalls Austin’s mother, Debbie. “I had heard that kids can outgrow arthritis, so I was hopeful. I spent a lot of time just trying to get all of the information under control.”
When it comes to arthritis in children, there are many misconceptions born out of hope. One of those is that children, as they age, actually grow out of their arthritis. It’s not that easy. However, one word does hold hope for children with arthritis and their families: remission.
What is Remission?
Remission is a term that often appears in literature and educational materials, but because it's used inconsistently, parents and health care providers alike often misunderstand its meaning. To cut through the confusion, a group of doctors developed standardized criteria for remission in children with arthritis.
Austin’s pediatric rheumatologist, Carol A. Wallace, MD, at the University of Washington and Children’s Hospital and Medical Center, headed up the project along with her colleagues at the Childhood Arthritis and Rheumatology Research Alliance (CARRA).
“We decided to develop criteria for remission because many children were achieving very low levels of disease that we thought was remission, and there was not a standard, accepted definition,” Dr. Wallace says. “As an example, out of 24 articles discussing remission in patients with juvenile idiopathic arthritis, only three used the same definition of remission. In order to communicate patient outcomes and do research on medications and treatments, we must use the same language worldwide.”
For Dr. Wallace’s study, 130 pediatric rheumatologists from 34 countries answered questionnaires about how they defined remission. Then, a group of doctors sifted through all of the data and determined that remission comes in three phases: inactive disease, clinical remission on medication and clinical remission off medications. Inactive disease has its own set of criteria including no inflammation in joints and other parts of the body.
“After a patient has met the criteria for inactive disease for a minimum of six months continuously, the patient can then be considered in a state of clinical remission on medication,” explains Dr. Wallace.
To achieve the third and final phase of remission, clinical remission off medication, your child must meet the criteria for inactive disease for a minimum of 12 continuous months while off all arthritis medications.
Is Remission Forever?
“About 44 percent of children will achieve clinical remission off of medications,” says Dr. Wallace. “But, by the time they have reached three years off their medications, 40 to 70 percent of them will have had a flare.”
Even if remission isn’t forever, Debbie Hyde says that her son’s periods of remission offer her – and Austin – hope for the future.
“We get so excited, but we don’t want to get too excited because we know it can come back,” says Debbie. “I remind him that we’re lucky to be where we are and that we should be thankful for his health.”
There's a clear link between a child’s treatment plan and the remission of his or her arthritis.“Nearly 90 percent of children achieve inactive disease, but the key is if they can come off their medications and stay in remission,” Dr. Wallace says. “I think a child’s chances of going into remission are better now because we’re more aggressive, we’re treating it earlier, and we now have biologics.”
How Can We Achieve Remission?
Both Dr. Wallace and Debbie Hyde stress the importance of following your doctor’s treatment plan and open communication.
“There should be a partnership with your rheumatology team,” Dr. Wallace says.“Remission should be the goal and expectation of the team. Treatment can be altered until remission is achieved. If a child is not 100 percent responding, the parents should be asking to do more to get the child into remission.”
Debbie urges parents to speak up. “We talk to Dr. Wallace about every little thing,” she says. “We’re very open with her. If we felt that something wasn’t working, she’d try something different.”
Austin, who is currently in clinical remission on medication, is down to just one shot of etanercept (Enbrel) a week. Although he has been in clinical remission without medication, it was short-lived.
“Last year was the first time Austin hasn’t been on medication since he was diagnosed,” Debbie recalls. “He slowly came off the medications, but after about six months off the medication, his arthritis came back. Austin was disappointed, but we went to the doctor and got back on his medications right away. Whenever he’s taking his medication, he’s in remission.”
Austin's experience highlights the importance of following your doctor’s instructions even when your child is feeling better. Debbie says that sometimes when Austin is in remission and feeling so well, it's tempting to not make him take his medications. But she always resists.
“When he’s in remission, he doesn’t ever hurt,” says Debbie. “It makes it hard to give him shots because he feels so well. We just know that it’s the medication that’s keeping him in remission.”
The decision to take your child off medications should be one you and your doctor make together. Often, if the disease isn't under enough control and you take your child off medications, he can have a flare. And, because of the nature of medications used today to treat arthritis, your child may not flare immediately but will when the medicine is out of his system in a few weeks.
So, is there any chance that your child’s arthritis can go away forever – meaning no more medications, no more pain and no more doctors?
“That would mean we have a cure, and we don’t have one yet,” says Dr. Wallace. “We’re getting there, though. I feel so fortunate that we have the treatment approaches we have now as opposed to what we had 20 years ago.”