Re: Re: MTX Side Effects - about

[Guest guest]

Thank you so much for your concern and I agree with you. We've gotten four

opinions, three were peds rheums known in their fields here in the Midwest and

they all said the exact same thing, so I'm confident they know what they are

talking about. She was on 45 - 67 mg of Prednisone a day when she was two and

three years old. (She was on them a little over a year). She's been on MTX for

four years now 15 - 25 mg a week. (It varies depending on her labs). She's been

on Remicade for three years now. Washington University of St. Louis has a study

that is in called " The natural history of steriod-induced osteoporosis in

Children " . They told me she'd have this forever and not grow out of it, but it

could go into remission. She will be on drugs for a long time though to keep her

symptoms controlled. They are supposed to be studying her bone density until she

is 20 with DEXA scans every six months. I just know how tired she is. The other

night she said to me, " Mommy, when I walk

fast or long or run around with the other kids my legs hurt and I can't keep up

with them. " That was hard to hear. She is a little sweet thing too. She gets

sick all the time from her immune system being so suppressed. Oh, gotta go make

dinner before she finds the chips. lol

Missy

snowdrift52003 <snowdrift52003@...> wrote:

I woke up thinking about your daughter and feeling concerned about

the quality of medical care she is getting. I don't know much about

JRA but your description of the prednisone use also raised quetions

in my mind. We know how damaging prednisone can be to the bones, and

I wonder about continued use of it on a growing child...? You didn't

say whether the plan was for short term use; that would not concern

me as much.

I would highly recommend getting a second opinion about 's

treatent plan from another rheumatologist--preferably someone who has

a lot of experience with juvenile RA.

Sierra

> > My tongue swelled a lot but I didn't know why. I got the answer

> here, I

> > wasn't taking enough Folic Acid. I was taking 1 mg per day, and

it

> wasn't

> > enough. The Rummy I was using ignored that fact when he increased

> my MTX to

> > 1.2 cc. I went up to 5 mg of Folic Acid and after a while, a

month

> or so, it

> > went back down to comfortable, but apparently the damage was

done,

> and it

> > gets tender sometimes and is larger than it was. At least it's

> better now.

> >

> > Dennis

> >

> > Re: [ ] MTX Side Effects

> >

> >

> > > anyone on injectable mtx have a reaction as tongue swelling, or

> feel it as

> > > it went thru your veins? now my 2nd week off after almost 4

yrs.

> still not

> > > sure

> > > what we will do next. my rheumi told me not to worry, many

drugs

> out

> > > there.

> > > but i only have medicare and the state plan which i may loose

> because i

> > > made

> > > $80 too much last year. yes i am getting scared. remembering

> what life

> > > was

> > > like before mtx

> > >

> > > kathy in il

> >

> >

> >

> >