update on Lexi and questions

[Guest guest]

Hello all,

I wanted to ask everyone their thoughts on some problems we have been having

with Lexi, but first I will give a re-intro for some of our newer members on

the listserv. My daughter Lexi (now almost 10) began complaining of pain in her

knees and a bit in her ankles at dinnertime when she was about 2 and a half

years old. She has never had a great appetitie (even to this day except when on

her highest doses of prednisone!) so we initially thought it was to get out of

eating dinner, but after many weeks which turned into months of this, she began

being very slow coming up the stairs from her bedroom in our finished basement.

Her pediatrician said it was growing pains, and after 3 or 4 mos. of giving her

major amounts of Tylenol, I fought her ped to send us to a specialist. The

first specialist was an orthopedic dr. that x-ray'd her hips and legs and found

nothing, so they sent us back to her ped. Then Lexi had an episode of 4 or 5

nights in a row where she held her knees to her chest and cried all night long,

falling asleep for a few minutes at a time, then waking and crying again saying,

" Mommy they hurt! " I fought my ped and finally got a referral to Dr. Hollister

(many of you all know this fantastic rheumy at Children's Hospital!) After

blood work, an exam, and a wait period of about 6 weeks, we finally got the

diagnosis of pauci or polyarticular JRA. She tried prednisone alone, naproxyn

alone, then oral methotrexate, and finally after " failing " off all of those she

found relief with Enbrel injections and was on this from about age 3 or 4 til

this January. This past Dec. Lexi took another blow in the medical dept. when

after several months of difficulty in the bathroom and finding large blood clots

in the toilet (again we battled our ped who told us for about 4 mos. that it was

constipation), we finally were sent to the GI dept at Children's. We feel like

we should have our own private suite there! They did an exam and said there was

definitely something wrong, then she was sent for a colonscopy in mid-Dec. She

was soon diagnosed with ulcerative colitis, and it was decided that Remicade iv

infusions would be the best treatment for both the collitis and JRA. She began

these in late Jan.(and Dr. Hollister said she shouldn't need the Enbrel while on

Remicade) and has now had 3 infusions. About a month ago the GI doc also

started Lexi on oral methotrexate to help resist building an immunity in Lexi's

body to the Remicade, and she has been kept on a low daily dose of prednisone

because when they tried to wean her completely off she began showing blood in

her stool again. My question for all you wise folks in the JRA family is this.

She has been complaining of fairly frequent knee pain again for the past 2

months or so, and Dr. Hollister prescribed Celebrex as a safe on the stomach

alternative for break-through pain instead of the previous naproxyn. So if

you've lost count by now, Lexi takes Remicade infusions, methotrexate (oral),

low dose prednisone every day, and asks for Celebrex at least 3-4 nights per

week on top of all the other meds. Has anyone ever heard of someone with JRA

being on this many arthritis meds and STILL h aving pain this frequently? I

know that when she has had a virus (cold, flu, strep, etc.) she gets more pain,

but this seems odd! I called Dr. Hollister's office and they said to put her on

2x / day Celebrex routinely now to see if it helps, but this seems so strange

that we seem to be going a bit backwards even with all these meds! Anyone have

any thoughts or had this experience before? Sorry for the long story but it

helps to get a history!

Thanks!!!

and Lexi (9, JRA, colitis, hypothyroidism)