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Patient Information: Support
Group: Online Support: My
Experience with Uveitis:
A Parents' Experience Getting their Daughter
on the Right Treatment for JRA-Associated Uveitis
We finally asked the pediatric ophthalmologist a very
difficult question, but one all parents of children with JRA-associated
uveitis should ask." How many patients with JRA-associated uveitis
have you treated till it 'burned out'?"
Submitted: May 2001
Demi was diagnosed with pauciarticular JRA (ANA+) when she was 2
years and four months old (1997).Only her left knee (swollen, painless
with a limp) was involved at that time and it quickly resolved.The rheumatologist
told us that she should have her eyes checked every 3 months
for uveitis ("what is THAT",I wondered) by apediatric ophthalmologist.We
were fortunate that the pediatric ophthalmologistwas very patient with
Demi so that she became accustomed to having the slit lamp examination
done.
I was away on a skiing trip 23 months later (1999) when I
called my wife and she told me the doctor had found some inflammation
(1+) in DemiÃs right eye and that DEMI had to start pred forte(PF) drops
and mydriacyl right away.I told my wife I would do everything and anything
to prevent Demi from losing her vision.
When I spoke with the pediatric ophthalmologist he said
hers was a mild case and she would be fine.I then went to the internet
to find out what this disease was and it's treatment.I was quite surprised
when I read about many children losing their vision from this disease
and that the mainstay of treatment was steroid.I was fortunate to come
across an article by C. Stephen Foster, MD, in the Journal of the
American Medical Association titled "Saving the Vision of Children
with Juvenile Rheumatoid Arthritis".When I read that I realized
how serious this disease was and that other drugs might be necessary
to avoid the potentially blinding complications often caused by a steroid
only approach.
I found the MEEI website, http://www.uveitis.org/, and printed
out everything written by Dr. Foster and brought it to the pediatric
ophthalmologist who told me DemiÃs case was not that severe.At that
time Demi was inflammation free on 4 drops of pred forte a day
and the plan was to taper the drops. Unfortunately when the drops
were tapered she flared.So off we went to Disney World with Demi on
6 drops per day.When we came back the inflammation was down so we tapered
to 4 and then the plan was to taper again.However the same thing happened;
DemiÃs eye ûflared" again.
I brought up Dr. Foster's treatment algorithm again, and
possibly seeing him for a consult, but was told that Demi's case was
"too mild for Dr. Foster to treat", and if we tapered her more
slowly off prednisone she would be "fine".We took Demi for a consult
with a uveitis doctor at Wills Eye Hospital who did not seem to be overly
concerned with tolerating low grade inflammation.They advised us that
. . . long term use of steroids was O.K. and that surgery could "fix"
a cataract.Methotrexate (MTX) was to be used "rarely if ever" on children
. . .That was enough for me.When we told him we were going to
see Dr. Foster, he wanted to know what he thought.
At that point we took Demi to see Dr. Foster for a consult. Dr.
Foster wrote a letter to the pediatric ophthalmologist and rheumatologist
to start her on Naprosyn and hopefully that would prevent her uveitis
from flaring as the steroids were withdrawn; if that didn't work then
Tolectin, and if that didn't work then MTX, but he would like to evaluate
her before that would take place.Dr. Foster was more than willing to
collaborate in my daughter's care. So, back on pred forte drops 4X a
day.
As I spoke wth the rheumatologist and pediatric ophthalmologist
they did not seem to want to move forward according to the treatment
algorithm advocated by Dr. Foster.And, the pressure in Demi's right
eye had risen into the mid 20's.What concerned me was that the pediatric
ophthalmologist said ... if the pressure continues to rise we'll just
add another drop to bring it down. I had read that the leading
cause of permanent visual loss in children with JRA-associated uveitis
is glaucoma.And, I read that cataract surgery on children is not nearly
as successful as on adults. I had the feeling that this doctor
was only comfortable with a steroid only approach and any complications
from such would be handled with more drops or surgery.When he recommended
that Demi be checked again in 8 weeks I knew Demi had to see Dr. Foster.
As a dentist I knew the long-term problems of systemic steroid
use and I knew that a joint could only be injected so many times in
a year with steroid without causing tissue damage.And, as a person
with psoriasis, I knew injudicious use of potent topical steroids
to the skin causes thinning of the skin.Why should the long-term use
of topical steroids to the eye be different?
I finally asked the pediatric ophthalmologist a very difficult
question but one all parents of children with JRA-associateduveitis
should ask.How many patients with JRA-associated uveitis have
you treated until it has 'burned out'?The doctor replied that he had
treated 3 children during his medical training.I appreciated all this
physician had done for my daughter but felt that in order to save her
vision she needed to be treated by a sub-specialist and a physician
who was treating these patients all of the time; Dr. Foster was my first
choice.
My wife initially took Demi to Boston by herself every 6
weeks.The next NSAID Dr. Foster suggested we use was Tolectin.Dr. Foster
told my wife that if that did not keep the inflammation quite 'we' would
have to have a discussion about methotrexate.Dr. Foster also told my
wife that the next five years would be critical in terms of Demi's treatment.When
I heard that I realized I would have to go to Boston the next time because,
more than likely, Dr. Foster would be recommending that Demi start on
methotrexate (MTX).
I did PubMed searches on uveitis and methotrexate
and JRA and methotrexate.What I found reassured me than MTX was probably
bettered tolerated than systemic steroids.And, I found that MTX DOES
NOT CAUSE CANCER.I bought medical textbooks and got a hold of journal
articles about children taking MTX for autoimmune mediated diseases.I
spoke with a colleague who gave me the name of a physician at Wilmer.I
e-mailed Dr. Phillip Dunn who stated that they often use MTXin children
with uveitis.However, Demi's rheumatologist, at that time, was against
it.When we saw Dr. Foster in late November 1999 I brought a list of
questions with me.Dr. Foster answered them all.Demi's right eye had
1+ inflammation and Dr. Foster suggested that Demi get any vaccinations
she needed and start on MTX 3 weeks after those were completed.
As I thought about it, and after I gathered more information,
I realized that Dr. Foster's treatment algorithm for treating uveitis
is the same as the algorithm for treating JRA.Why would doctors use
MTX for jointdisease and not eye disease?Most joints such as the
knees,hips, and shoulders can be replaced.The EYES cannot be replaced!When
I discussed this with the rheumatologist he agreed.I then decided we
would need physicians locally with extensive knowledge and experience
prescribing MTX in case Demi had a problem.So, we scheduled an appointment
with the pediatric rheumatologist at Childrens Hospital of Philadelphia.
In December 1999 Demi stared methotrexate.In January, when
we went to the pediatric rheumatologist, they stated that many of the
patients with uveitis are on MTX and that it is a safe drug if monitored
properly.The doctor, who trained a Denver Childrens,was very familiar
with Dr. Fosters work and had participated with him in the care
of some uveitis patients while in Denver.Finally.Someone who concurred!
Demi has been on methotrexate now for 18 months.She has
had to use steroid drops once for 8 weeks due to a flare possibly triggered
by one cold after another, or just simply that in that year she had
grown.She now takes 10 mg once a week, by injection.She has had
no side effects.We look forward to the time when we can start to taper
the methotrexate.When we first started MTX we asked Dr. Foster what
Demi should avoid doing.Dr. Foster's response was,"just let her
be a kid". During our most recent visit to MEEI the Fellow/Resident
questioned us with regard to any vision loss or complications.He seemed
surprised when we said "none".Clearly, many children who get, finally,
to MEEI are seen after the development of cataracts, or glaucoma
or other complications.Thankfully, for Demi, all that has been avoided
because we followed the treatment advocated by Dr. Foster TOLERATE
NO ACTIVE INFLAMMATION OFF ALL STEROID!
Link to Photo Essay of Demi's Trip to Boston
Glenn
CLICK AND READ . . .
How often should
my child get an eye examination if they have JRA?
Juvenile Rheumatoid Arthritis
and Uveitis
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