Re: update on Lexi and questions

April 14, 2011

,

My Daughter takes a similar med routine. She failed Enbrel and Remicaid but does

take Humira now, Celebrex 2x day, Prednisone, MTX, ultram and tylenol as needed

plus vitamin D, tummy meds, etc. So unfortunately yes, I do know that can be

true. When we have tried to drop any of these she flares. She has tried to

decrease the MTX, the pred, the celebrex with no success. And yes she still

needs the ultram and the Tylenol.

e, mom to " joe " 24 poly+

PS I think i would be looking for a new pediatrician since your doesn't seem to

listen to you

From: redfeather03@... <redfeather03@...>

Subject: update on Lexi and questions

Date: Wednesday, April 13, 2011, 10:13 PM

Â

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)

April 14, 2011

I agree with e - sounds like its time for a new pediatrician. Or at least

a heart to heart talk about why he doesn't trust your instincts as Lexi's mother

- you know her better than anyone!!

As an adult RA sufferer, I can tell you that in times of bad flares, it is very

possible to hurt and be on all those meds. The thing is, some of the meds

(biologics like Enbrel or Remicade) simply stop working. In fact the body can

develop antibodies.

So it sounds like a trip back to the rheumy is needed to discuss Lexi's increase

in pain. Best wishes dear one. Prayers to you and your girl.

update on Lexi and questions

>

> Date: Wednesday, April 13, 2011, 10:13 PM

>

> 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)

>

April 14, 2011

My son is on Feldene which is one of the strongest nsaids, plaquenil(cause he

puked on MTX), Humira. He is off steroids, but it took a long time to wean him

off. All this to say, he still hurts. He still has fatigue. And your baby has

2 chronic diseases to deal with. So that sounds kind of " normal " to me. Even

though it isn't any where near real " normal " ! I think they would consider her

hard to control.

Does your GI think the Celebrex could be bothering her UC? My husband has had

UC for 25 years, and he can't even tolerate advil. Everything makes him bleed.

He also has arthralgias(joint pain, but no redness or swelling) from the UC. He

can only take tylenol for the pain.

I wish I had a better answer. Humira worked very well for my son after Enbrel

failed after about 6 months. BUT it isn't labeled for UC, although it is for

Crohns. Hmmm.

Is she on a sulfa-type drug for the UC?

I agree dump the pediatrician.

I am so sorry she is dealing with all of this. Maybe your doc will think of

something new.

Audra

14 poly 07

Peyton 13 poly 08

>

> 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

April 14, 2011

Hi everyone,

It's funny, everyone suggested get a new ped and this one is actually a

different one than the one that missed the JRA dx! Seems that good old mom has

more intuition than the doctors! I am wondering how all of you handle trying to

figure out when to make yet another trip to Childrens? Lexi was still

complaining of knee pain thiis eve. after starting on ad to 2x a day Celebrex

and I hate that I had to talk with her about " learning to live with some measure

of pain. " That should never be the case but I worry that they will keep adding

more meds to her already huge list and they may make no difference either! How

do you all handle knowing when to just " gloss over " mild to moderate pain vs.

taking them back in for more tests and more meds!

Thanks for all your responses!

Re: update on Lexi and questions

My son is on Feldene which is one of the strongest nsaids, plaquenil(cause he

puked on MTX), Humira. He is off steroids, but it took a long time to wean him

off. All this to say, he still hurts. He still has fatigue. And your baby has 2

chronic diseases to deal with. So that sounds kind of " normal " to me. Even

though it isn't any where near real " normal " ! I think they would consider her

hard to control.

Does your GI think the Celebrex could be bothering her UC? My husband has had UC

for 25 years, and he can't even tolerate advil. Everything makes him bleed. He

also has arthralgias(joint pain, but no redness or swelling) from the UC. He can

only take tylenol for the pain.

I wish I had a better answer. Humira worked very well for my son after Enbrel

failed after about 6 months. BUT it isn't labeled for UC, although it is for

Crohns. Hmmm.

Is she on a sulfa-type drug for the UC?

I agree dump the pediatrician.

I am so sorry she is dealing with all of this. Maybe your doc will think of

something new.

Audra

14 poly 07

Peyton 13 poly 08

>

> 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

April 14, 2011

Hi,

had no prior health issues at 2 when he was diagnosed with SOJRA

except allergies. We just decided to SLAM it as quick as possible. Yes,we

worried about future side effects but 9 yrs later the only side effect is no

drugs since Feb 7th.He was on triple DMARDS and 2 steroid joint injections but

we just pushed forward to give him a childhood.It did take about 18 months to

get him off of the steroids being systemic but things worked out. even

played football for a season.His goal now is to make his MS baseball

team,football team{NOT} Trap team and if all else fails Rugby

________________________________

From: " redfeather03@... " <redfeather03@...>

Sent: Thu, April 14, 2011 11:03:31 PM

Subject: Re: Re: update on Lexi and questions