Re: Misty - mtx

[Guest guest]

Stacia - did Hunter start out on the mtx pills or the injections? Our Rhuemy

wants to switch to the injections to see it will be more effective with our

daughter. She is doing better but not as well as the dr. wants her to be. Any

info would be appreciated. ( Sandi Ken Hunter 6 systemic)

[Guest guest]

Hey there,

Just thought I would add to all the other info you have gotten so

far, I am not an active poster here, but I have seeked this group for

lots of info and support, and am so thankful it is here! My son is 9,

he has systemic JRA also, he was diagnosed August of 2003. His doctor

started him out with a high dose of oral prednisone, along with

weekly mtx orally (it was the injectable solution, we just squirted

it in his juice and he took it orally). As we started tapering the

pred., he began having serious nausousness right after taking the

mtx, so the doctor decided that since we were tapering the pred

anyways, that we should increase the mtx to the highest dose he could

take (1cc a week, same as 25mg) and therefore, with that high of a

dose, it had to be given by injection, also, the doctor felt his

stomach issues would subside once we switched. Well, the stomach

issues subsided for about 2 months, then slowly he began feeling

extremely nausous right before the injection, and would vomit right

afterwards, it got so bad that if he even thought about a shot of any

kind, he would have to go throw up, and eventually, he was throwing

up daily throughout the week. So, his doctor felt he could possibly

be having a reaction to the mtx, so we immediately stopped it, and

started him on a daily dose of naproxen, and thank goodness and

knocking on wood and keeping our fingers crossed daily...he has been

doing very well, and has not had any serious issues in almost a year.

Like Stacia said, we too take it one day at a time. I hope

things get better for your child soon.

Jodi, Bronson, age 9, systemic

[Guest guest]

Sandi,

That's exactly what happened to us. We started on the pills, saw

some improvement, then went to the squirting the injectible liquid

into juice to drink. Still not where we wanted to be, so started

the injections. The injections did the trick and if I knew then

what I know now, I would have gone right with the injections from

the start. But, when everything is so new at the beginning, you

need to go at a pace you're comfortable with.

Stacia and Hunter, 8 systemic, iritis

[Guest guest]

Thanks, I've been looking into mtx and other DMARDs. The posts on

here have helped a great deal. Hopefully, I can start going into his

dr appts with a little more information about what's going on lol

I would rather avoid giving him any injections, though, as he is

absolutely terrified of needles since his hospital stays this past

spring.

Misty & (6, systemic)

>

> Misty,

>

> I had answered you a couple days ago with how Hunter was doing and

> why some people do the injections of mtx instead of oral....I

posted

> it.... and it never showed up. Hopefully the last couple days of

> posts on mtx have answered your questions, otherwise, repost with

> what you would like to know. I pray things are going well for

you.

> (Hunter is doing great and has been for about 8 months. The only

> DMARD he is on is mtx, 1 ml (same as 25mg) which is the max. dose

> for his weight). He's been off pred. completely for about two

> months. That being said, he's doing great, but way too early to

> feel like we're out of the woods. One day, week, and month at a

> time.

>

> Stacia and Hunter, 8, systemic

[Guest guest]

Sandi,

s story is similar.He started MTX oral in his juice right before his 3rd

b-day and after 4 months no improvement at all.We switched to injections and

he responded immediately.He was eventualy maxed out on 1ml or 25mg and other

drugs added but it's been over 3 years now and he takes 7.5mg a week in pill

form and it's working great.I prefer the shots but has delevelopd

psychological issues with the yellow shots(MTX).Takes his 2 Enbrel shots a week

just

fine though.

At first the thought of haveing to give your child a shot is unsetteling but

the sub q injections are realy easy and it doesn't take long to get the hang

of it.

Hugs

Becki and 6 systemic

[Guest guest]

Becki - if the MTX was working why did they add the enbrel? Our doctor

mentioned Enbrel this week when he was talking about the injectable MTX. We had

thought she was doing much better but Doctor thought there was room for

improvement with her range of motion. We got her labs back today and her SED

was 12

.. Doctor called today and was very happy with the labs and said we would stay

with the meds the way they are. Thanks Sandi Ken Hunter 6 Systemic.

[Guest guest]

Sandi,

Hears the link to s story on Cincinnati Childrens Hospital website.It

speaks volumes as to why they added Enbrel.

http://www.cincinnatichildrens.org/about/patient/rheumatoid-arthritis-david-la

rson.htm

was not the sickest systemic child but very sick none the less and no

matter what they threw at him it just wasn't enough.Enbrel was DMARD #3 along

with large amounts of Ibuprofen and continuous steroid use.The Enbrel

worked, went into a very strong medicated remission and for 22 months all

the

other drugs were tapered and discontinued,all but the MTX very quickly.It took

18

months to taper from 25mg to nothing and when we got to nothing we learned

that Enbrel alone was just not enough so we restarted a very low dose of MTX.It

seems to be working and he appears to be back in medicated remission.

Hugs

Becki and 6 systemic