This article is more than 5 years old. Information may no longer be current.
Q&A: How to identify, help patients with juvenile arthritis
Juvenile Arthritis Awareness Month is observed each July to raise awareness of the disease, which, according to the NIH, affects about 294,000 children in the United States. Although the disease can go into remission as the child grows older, there is still no cure.
Experts say that unlike some other diseases that affect children, there is no way to prevent juvenile arthritis. Further complicating the matter is that there is no single risk factor for the disease — often it’s a combination of factors that ultimately leads to the diagnosis. Compounding the problem is that not everyone realizes such a disease can occur in children.
“It is not common knowledge that a child can get arthritis. It seems to be a contradiction of terms: old people get arthritis, so how can a child get it? Most people don’t know about it,” Charles H. Spencer, MD, of the rheumatology department at Nationwide Children’s Hospital in Columbus, Ohio, told Healio Family Medicine.
In recognition of Juvenile Arthritis Awareness Month, and to increase awareness of the condition, Spencer discussed some of the risk factors and treatments, as well as the conversations that should, and should not, be had with families of those diagnosed with the condition.
Question: What are the risk factors for juvenile arthritis?
Answer: There is no simple explanation on a cause. It is a typical autoimmune combination of genetics and an inherited tendency to get autoimmune problems: environment, some stimuli and differences in how some individuals respond to these stimuli, genetics and the environment. There is no way to prevent the disease. One of the risk factors is a history of autoimmunity in the family, such as thyroid problems, type 1 diabetes, inflammatory bowel disease, lupus, or even conditions like psoriasis. When you have those types of problems in the family, and you meet the wrong stimulus at the wrong time, it sets off a chain of events that leads, in the body, to an arthritis problem. Another major risk factor is genetics. It’s not a simple one-gene type of defect that can be easily traced through a family; it’s more complex than that. But people don’t look at genetics and family history until after something has happened, like after a child has been diagnosed with type 1 diabetes. Then you check the family’s medical history and discover things an uncle had Crohn’s disease and an aunt had thyroid problems. Then you start to understand that a patient’s family has a tendency towards these autoimmune problems.
Q: What should a primary care physician tell a parent who has a child with this condition?
A: In at least 50% of children, juvenile arthritis does go away or into remission before adulthood. With the new drugs we have, there’s much less chance of leftover damage to the joints, and less chance that the child’s long-term life will be affected. The residual effect is much less than it was 30 or 40 years ago. We have great drugs, so we’re always optimistic that a child with arthritis will do better. The diagnosis is often doubted by family members and others because they just don’t know about it. It’s a contradiction and oxymoron. Primary care physicians will have to educate the parents and get them to understand it’s the fifth most frequent chronic disease in children. PCPs can be very helpful in helping the family adapt with this new and unexpected diagnosis. They can help the family deal with medication:. They have to be made aware to call the rheumatologist if a fever gets above 101 to see whether they have to delay an injection. You don’t want to give the biologic medications frequently when the child is ill. A PCP can be very helpful in making sure any illness the child has is not made worse by giving the medication at the time of the illness.
Q: W hat shouldn’t the physician or pediatrician tell the parent?
A: The major thing to avoid saying is that the child will grow out of it. We can’t promise that; we can’t promise a cure. The medications are terrific these days, but there really is no one cure. There’s no easy diet that changes the arthritis so far, there’s hopes that there will be some anti-inflammatory diets in the future, but right now there’s not one thing. Avoiding gluten doesn’t necessarily help. However, there’s no magic diet at this point, otherwise we’d be using it.
Another thing a PCP needs to make parents of patients with juvenile arthritis aware of is immunizations. Some of the live viruses like chickenpox and measles immunizations, should not be given to a child on methotrexate and the biologics because patients can get the infection just from the shot because their immune system is compromised.
Q: Are there ways primary care physicians can advocate for their patients who have juvenile arthritis?
A: The PCP has to help the child deal with life after getting this musculoskeletal problem. Specifically, sometimes kids have trouble getting to school because they’re stiff in the morning, from arthritis, so they can miss school days. PCPs have to help school leaders to understand that this is a consequence of illness, and not the parents or the child’s fault. And they may have to help physical education teachers understand that this child who looks perfectly normal to them has a problem that might make it hard to run a mile or run five laps like everybody else. It might be harder for the child to do it without significant pain.
Q: What treatments are available for juvenile arthritis?
A: We often start with an anti-inflammatory drug like ibuprofen. You can also use cortical steroids, an injection into one swollen knee, because there are children who just get a couple of swollen knees or swollen ankles and don’t get anything more. But if they have significant arthritis, with five to 10 joints inflamed, like the fingers, elbows, knees, or wrist, as well as the ankles, they sometimes need stronger medications that can put the disease into remission.
If juvenile arthritis is left untreated, it can spread to even more joints and the patient can have increasing disease development over time. One medicine we use is methotrexate, which is an immunosuppressive drug usually used to treat cancer. We use in low doses once a week, and it’s a really good medicine for mild-to-moderate arthritis. But the best medicines are biologics such as Humira (adalimumab, AbbVie). Those types of medicines are the first specifically made for arthritis. Everything else we’ve had over the years, including methotrexate, has been medicine that we’ve taken from other uses such as for cancers, and modified them to fit with arthritis. But these biologics were developed specifically for arthritis, and they are much better than anything we’ve ever had. In 25% of the cases, the kids can go from lots of arthritis to nothing over a period of a few months.
However, medications can be expensive: Some cost $10,000, some cost $30,000 and some can cost up to $100,000. Insurance companies don’t want to pay for those. We’re concerned that with insurance instability recently, things will get harder rather than easier as far as getting these drugs approved for our patients. In spite of this, treatment is a much more optimistic story now than it was when I started years ago, and that’s good. We can actually take kids and prevent the arthritis damage and other things that occur with these illnesses. It’s a long-term effect.
Disclosure: Healio Family Medicine was unable to determine Spencer’s financial disclosures prior to publication.