NEW MEMBER LOOKING FOR HELP.

Posted April 15, 2000 · April 15, 2000

HI, MY NAME IS LINDA AND I HAVE A 8 YEAR OLD DAUGHTER NAMED

JENNIFER.JENNIFER HAS SYSTEMIC JRA. SHE FIRST GOT IT WHEN SHE WAS 5

AND IT LASTED 9 MONTHS. BACK THEN INDOCIN WAS ALL SHE NEEDED TO KEEP

THINGS UNDER CONTROL. SHE WAS IN REMISSION FOR A YEAR AND A HALF.

THEN SHE GOT THE FLU OVER CHRISTMAS VACATION AND THE JRA CAME BACK

WITH IT. WELL THIS TIME IT IS WORST. THE FLARE UP WOULD NOT GO AWAY

WITH JUST INDOCIN. THEY PUT HER ON PREDISONE AND THAT WORKED

GREAT.WELL I WILL TRY TO KEEP THIS SHORT.NOW WHEN I TRYED TO WEAN HER

OFF THE PREDISONE THE FLARE UPS COME BACK. SHE GETS HIGH FEVERS THE

RASH AND ACHES EVERYWHERE OR ALWAYS ADIFFERNT JOINT IS BOTHERING HER.

NOW HER DOCTOR WANTS TO PUT HER ON METHOTREXATE, I WAS SUPPOSE TO

START IT TODAY AND I CHICKENED OUT. I HAVE HEARD ALL THE HORROR

STORIES ABOUT GETTING SICK WITH IT. I FEEL THAT SHE IS NOT IN THAT

BAD OF SHAPE TO PUT HER ON SOMETHING SO STRONG. AND I AM HOPING THAT

BY THE SUMMER SHE MIGHT GO INTO REMISSION AGAIN LIKE WITH THE FIRST

TIME. RIGHT NOW SHE IS TAKING ONE HALF TEASPOON PREDISONE EVERY OTHER

DAY AND INDOCIN 3 TIMES A DAY AND THAT IS CONTROLLING THINGS GOOD.

ONLY WHEN SHE OVER DOES THINGS (LIKE PLAYING TO LONG OUTSIDE)DOES SHE

FEEL IT THE NEXT DAY. I GUESS MY QUESTION TO YOU IS DO YOU THINK I

NEED TO START THE METHOTREXATE OR LEAVE THINGS ALONE FOR NOW AND SEE

WHAT HAPPENS NEXT. ALSO I WOULD LOVE TO HERE FROM ANYONE WHOS CHILD

IS ON THIS DRUG AND WHAT RESULTS THEY HAVE HAD GOOD AND

BAD.

THANKS FOR LISTENING.

Posted April 15, 2000 · April 15, 2000

Dear ,

Hi. I was feeling the same way when my daughter's Dr. wanted to put her on

Metho. I was so scared. I have to tell you though, it was the best thing we

ever did. Unlike some of the others, she has really no side affects. She

has been on it for approximately 3 years. She was doing so well on it that

we took her off of it for about 5 months. She did really well, and then she

got the flu (like your daughter) and it came back, so she is back on it

again. I am so glad that we put her on it. Her quality of life has been so

much better because of it. She couldn't walk across a mall with out complete

exhaustion and now she is playing on basketball teams etc. I know from

reading some of the messages that some kids do get really sick. I think you

will just have to decide for yourself. I think it is worth a try and if she

doesn't do well you can always stop it. I know it is soooo hard to know what

to do. My prayers are with you...Love, Diane

Posted April 15, 2000 · April 15, 2000

Hi ,

My daughter has been on the Methotrexate for a little over a year. At

first things went really great no side effects at all but over the last 8

months she was getting sick from the medication at first just a little

....then worse. We just switched to MTX injection once a week and so far so

good..no side effects like the oral dose!! Choices regarding med's are hard.

For us the MTX has been great and helped alot with her arthritis. You can

always try it & stop if you don't have a good response. However it can take

several months to actually start seeing the benefits of a drug like MTX. I

hope I haven't confused you more!!! You will be in my prayers!!! Kris

Posted April 16, 2000 · April 16, 2000

,

My daughter is on mtx and it has helped her out alot. there are some side

affect too, but zhondrese got mouth sores and we use benadryl and maalox to

gargle with. she lost her hair too, but it growing back now and she has

grained 20 lbs on the mtx too. it given every friday evening and she's not

sick the next day either. once a month she gets blood work done because she's

on mtx. but there are others here that have sick affects that worst than

drese's so far we have be blessed and i thank GOD for that too. as for

telling u what to do for your child about this med. i won't tell u to or not

to, because that's a choice you'll have to make for your self. i will say

that if it was my choice i would not have given it to my child, but i didn't

have a choice. it was either meds. or let her keep suffering because i didn't

want her on med. so i gave her the meds. despite how i felt about it. so

again i say the choice is yours.

ywellen

Posted April 16, 2000 · April 16, 2000

Our daughter has systemic and is on naprosyn, 4mg prednisone (and slowly

tapering), and plaquenil. Plaquenil is sometimes given for more mild JRA.

It has less side effects than metho. Maybe you could discuss this

medication with your doctor. Our doctor uses it before mtx when he can.