All you need to know about JRA (Juvenile Rheumatoid Arthritis)

This page is provided by Thomas J. A. Lehman MD

Delivering the best care - with great care

 Dr. Lehman is the author of many textbook chapters and articles on the care of children and young adults with arthritis and related conditions.He practices in New York City.Click here for more information about Dr. Lehman or the Hospital for Special Surgery.

 

†† BE SURE your child is getting the care they need.Do you have questions about medications, lab tests, dealing with schools, teachers, family and friends, insurance companies, finding the best doctor?Thereís too much to put it all here on the web.Many more answers you need are in my book (see below or click here).

 

 

†† Juvenile rheumatoid arthritis is now called by several different names.You may hear it referred to as juvenile chronic arthritis (JCA) or juvenile idiopathic arthritis (JIA).No matter which of these names you are given it is important to understand that JRA is not a single disease.Instead it is an umbrella term which is used to describe the majority of children with chronic arthritis of unknown cause.There are many different causes of arthritis in both children and adults.Most likely they all do not have the same cause, the same best treatment or the same likely outcome.As a result being told that your child has JRA really doesnít tell you very much.

I often use the example of going to the pet store and buying a dog.When you go home and tell your spouse you bought Ďa dogí that seems to mean something at first.But then when they ask what kind of dog or how big a dog or how old a dog, so they can prepare an appropriate dog house and buy appropriate food and other supplies you donít know any of the answers.If all youíve been told is Ďa dogí it isnít very helpful.Being told your child has JRA is like being told youíre getting Ďa dog.í

†† In most centers JRA is divided into subtypes based on the number of joints involved during the first six months of disease.These subtypes help to understand more about what type of arthritis your child has, but can be misleading.The most common subtype is pauci-articular JRA.This means the child has less than five involved joints during the first six months of disease.Children with puaci-articular JRA are usually very young and girls more often than boys.Most are under the age of five years and there should be a lot of doubt about the diagnosis if the child is over ten years of age.Many children are diagnosed during the first two to three years of life.Typically the parents cannot tell you when the disease started.Often they notice that the child didnít seem to walk correctly early in the morning, but the problem always went away after a few minutes at the beginning and frequently the pediatrician doesnít see anything in the office.

††† Never let a doctor tell you they canít diagnose JRA if they havenít been seeing the child with arthritis for six weeks, or three months, or six months.It is true that other causes of arthritis must be excluded, but if youíve seen your child limping in the morning for more than six months, thereís no reason to wait six more months (or even six more days) to begin treating the child.If the child has only been limping for a few days thatís a completely different story.

†† Typical pauci articular JRA is usually a mild disease that children will grow out of but there are several things to watch out for.The most important is that these children can have eye involvement which neither the children nor their parents are aware of.This eye involvement can only be detected by an ophthalmologist using what is called a slit lamp.It is very important that this be detected early because untreated eye involvement can lead to permanent visual problems.The other major problem with pauci articular JRA is that the children may have prolonged inflammation leading to increased bone growth.If the knee is involved, then as a result the leg on one side may be longer than the other.These problems can be prevented if the child is diagnosed promptly and proper therapy is immediately begun.

†† Unfortunately the diagnosis is often delayed in children with pauci articular JRA because the pediatrician may not notice a slightly swollen knee and the blood tests are often all normal.Donít let your doctor tell you the child doesnít have arthritis because the rheumatoid factor is negative (this test is not useful in children).They also may think that the child cannot have arthritis because the sedimentation rate (ESR) is not elevated, again this is wrong!!If your child seems to be stiff when they wake up in the morning or doesnít walk normally at the beginning of the day they must be evaluated by an experienced physician.[There is a much more detailed discussion in my book, Itís Not Just Growing Pains].

††† Children diagnosed with pauci articular JRA often do quite well and this is an arthritis that children often grow out of.However, good medical care is important for children with pauci articular JRA in order to prevent complications such as eye disease and leg length discrepancy.It is also very important to realize that some children who initially look like they have pauci articular disease are in the early stages of developing poly articular disease which may be more severe.There are some tricks which help parents and doctors to suspect which child has more severe disease so they can promptly begin more aggressive therapy.High sedimentation rates and anemia are the most important findings.Swollen fingers and toes also suggest a more serious diagnosis. [again see Itís Not Just Growing Pains]

†††† Poly articular JRA is defined by the presence of arthritis in five or more joints during the first six months of disease.It is often a much more serious condition.While there are some children who Ďgrow outí of poly articular JRA most children with this form of arthritis go on to have chronic arthritis.It can affect children at any age.Again this is most likely not just one disease, but a variety of different diseases.This makes it very hard to given parents an accurate prediction of the outcome unless you are a very experienced physician and have had a chance to follow the childís disease and evaluate all the laboratory tests.Again the rheumatoid factor is almost always normal.The other tests including the sedimentation rate are highly variable.Because there are some many different forms of the disease and the outcome is so varied it is important that children with poly articular JRA be seen by an experienced specialist.With appropriate aggressive therapy such as the newer biologic agents [see Itís Not Just Growing Pains] these children often do very well.Without appropriate therapy the long term outcome is much more uncertain.

†††† Systemic onset JRA is defined by the presence of fever and a typical rash.It can occur at any age and is probably a completely different disease from the other forms of JRA.This is probably a bear not a dog at all.Children with systemic onset JRA can be extremely ill and may even develop life threatening complications.All children with systemic onset JRA should be cared for by an experienced Pediatric Rheumatologist for several reasons.First a variety of other serious illnesses may be mistakenly diagnosed as systemic onset JRA.It is very important that the right diagnosis is made and a child with a serious infection or leukemia or many other serious illnesses is not treated for the wrong diagnosis. [see Itís Not Just Growing Pains]In addition systemic onset JRA may be very difficult to bring under control.You need an experienced physician who is aware of all the latest medications and how to use them.In addition children with systemic onset JRA may develop severe and possibly life threatening inflammation of the bone marrow and other internal organs.Early diagnosis and experienced care are critical to getting the best possible outcome.

 

†††† There are many new agents available for the treatment of children with JRA/JIA.With the availability of anti-TNF agents the vast majority of children do exceedingly well.Only a very few need additional drugs.But if they do we have them!!New drugs like rituximab and abatacept are making severe disability a rare event.Even more new drugs are on the way!!All of these will have to be carefully evaluated.Every drug has the potential for serious side effects, but we are moving forward.

 

†††† Side effects???†† Every day I hear families worry about side effects.Sure side effects can occur.Sure they can be serious.However the disease is serious right now or we wouldnít be using the drugs.Worrying about side effects is like playing a roulette wheel with 99 reds and 1 black.No one could ever say you canít hit black, but everyone would bet on red!!!!If you donít need to take medicine because you donít have arthritis, thatís the best.But if you have arthritis take proper care of it!!Donít let bad things happen every day because of fear that a bad thing might happen some day.

 

†††† Many children with spondyloarthropathy, psoriatic arthritis, Lyme disease, infections and a variety of other illnesses which can cause arthritis are initially misdiagnosed as having JRA by inexperienced physicians.The key to getting the best results for your child is to make sure you are being cared for by an experienced physician who is listening to your concerns and giving your child the best possible therapy.If you are looking for more information you can check the other pages on this website, check with your local office of the Arthritis Foundation, or consult with your physician.I have put much more information in my book which is intended to help both physicians and the families of children with arthritis make sure they get the best possible outcome. [see Itís Not Just Growing Pains]

††† BE SURE your child is getting the care they need.Do you have questions about medications, lab tests, dealing with schools, teachers, family and friends, insurance companies, finding the best doctor?Thereís too much to put it all here on the web.Many more answers you need are in my book.

††††††††††††††††† My book Ėclick here to order at a discount from Amazon.com!!

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This site provided by Thomas J. A. Lehman MD
Chief, Division of Pediatric Rheumatology
The Hospital for Special Surgery
535 E 70 St,
New York, NY 10021
212-606-1151, fax 212-606-1938, e-mail
goldscout@aol.com

My book Ėclick here to order at a discount from Amazon.com!!

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††† ďDr. Tom Lehmanís experience and compassion are evident on every page of this book, and they help guide the readeróchild, parent, and healthcare professional alike Ė through the world of childhood arthritis.This book is an absolute gem written with a single goal in mind:improve the lives of kids with arthritis.Ē -- Jack Klippel, M.D. President and CEO of the Arthritis Foundation

†††† ďDr. Lehman has given parents and families of children with arthritis the first book that speaks to the parent and child as equals.His book explains the illnesses, the medications, the lab tests, and the disease course in simple, understandable lay language and givens them valuable insight into how a pediatric rheumatologist thinks.Bravo!Ē-- Charles Spencer, M.D., Professor of Clinical Pediatrics, University of Chicago, La Rabida

 

Last updated 06/27/07

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This site provided by Thomas J. A. Lehman MD
Chief, Division of Pediatric Rheumatology
The Hospital for Special Surgery
535 E 70 St,
New York, NY 10021
212-606-1151, fax 212-606-1938, e-mail goldscout@aol.com

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