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
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?
There’s 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 doesn’t 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 ‘a dog’ 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 don’t know any of the
answers. If all you’ve been told is ‘a
dog’ it isn’t very helpful. Being told
your child has JRA is like being told you’re getting ‘a dog.’
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 didn’t 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 doesn’t see anything in the office.
Never let a doctor tell you they can’t
diagnose JRA if they haven’t 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 you’ve seen your
child limping in the morning for more than six months, there’s 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 that’s 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. Don’t
let your doctor tell you the child doesn’t 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 doesn’t 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, It’s 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 It’s 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 ‘grow out’
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 child’s 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 It’s
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 It’s 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 wouldn’t 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 can’t
hit black, but everyone would bet on red!!!!
If you don’t need to take medicine because you don’t have arthritis,
that’s the best. But if you have
arthritis take proper care of it!! Don’t 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
It’s 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? There’s too much to put it all here on the
web. Many more answers you need are in
my book.
My
book –click here to order at a discount from Amazon.com!!
Click here for
reviews and more information about this book
Click here if you are
interested in making an appointment to see Dr. Lehman
Dr. Lehman’s goal
has always been
Giving the best care with great care
This site provided by Thomas J. A. Lehman MD
Chief, Division of Pediatric Rheumatology
The Hospital for Special Surgery
535 E 70 St,
212-606-1151, fax 212-606-1938, e-mailgoldscout@aol.com
My
book –click here to order at a discount from Amazon.com!!
at Amazon.com
“Dr. Tom Lehman’s experience and
compassion are evident on every page of this book, and they help guide the
reader—child, parent, and
healthcare professional alike – 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.” -- Jack Klippel, M.D. President and
CEO of the Arthritis Foundation
“Dr.
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!”-- Charles Spencer, M.D., Professor of
Clinical Pediatrics,
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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,
212-606-1151, fax 212-606-1938, e-mail goldscout@aol.com
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