Re: MTX injections(georgina)

[Guest guest]

Hi Becki,

I do hope that just a small increase in 's pred will be enough to

help get things more under control and to calm down the arthritis. Maybe

it was aggravated, like you said, by the cold virus he had. That happens

a lot. Switching over to the injectable form of MTX was one of the best

things we ever did. The response Josh had was dramatic. Even though

's pediatrician seemed to think his improvement wasn't necessarily

from the change in med delivery but rather something else .... he hinted

at the start of puberty, changing hormones, perhaps having more to do

with it. I still think it was from being able to absorb a more

therapeutic dose of MTX by injection.

Becki, I apologize for not responding sooner. Though I do set aside a

certain number of hours each week to devote exclusively to JRA List

related computing, when we got our new computer the children and their

friends were monopolizing it. I hardly had a chance to respond, though I

do read all of the list messages. Unfortunately, our computer broke down

yesterday. A complete system crash. Nothing that the kids did. Nothing

that I did or neglected to do. I think that model just had a lot of

instability. That's the impression I get from the salespeople at Sears.

That was actually our second new desktop. I had exchanged it for the

very same model because the first had a defective modem and various

other significant issues, right out of the box. So here I am once again

typing on our old keyboard, running our old computer, which has always

been trusty and reliable. (As slow as could be, though.) I will try my

best to keep up with everybody's letters but again, switching systems

has caused me to lose a bunch of messages from this past week. I've been

switching operating systems and computers and browsers for the past two

months! I have a feeling it won't be too long before I find and purchase

another affordable computer (NOT the Compaq 4090US though) but I think

I'd like to wait for holiday sales maybe? We'll see how long we can put

it off.

Becki, I hope continues to do well and improve and I agree with

you, about moving forward and not focussing too much on the what-ifs.

That's a good attitude. Getting a handle on this kind of diagnosis and

finding the best treatments for a particular child takes time and a lot

of patience. Trial and sometimes, error. I'm happy to hear that this

group has been helpful for you. I've learned so much from the people

here and their support has helped me through some of the most difficult

times.

All the best,

Georgina

Allan Larson wrote:

>

> Hi,Georgina,its Becki.Thank you for the post,this is the first time you have

> personally responded,except to welcome me.Due to the fact you started this

site,I have

> learned more than I ever could surfing the net for JRA.I think you read some

things

> wrong. is on 9mg prednisilone rheumy wanted to bring it up to 21mg,I

think I made

> it sound like may be starting to flair.Personally I think his 2 bad

weeks was

> just a fluke,he has had a mild cold.No fever just the sniffles and a little

cough on

> and off .Due to your website and the things I have learned from it I called

the rheumy

> back,and after going into a little more detail about how has been doing

this

> week he agreed to just go to 12mg which is only 3mg more than what he has been

> taking.Again if it wasnt for this site I would have just agreed with him and

put him

> on 21mg,and hope it didnt take to awful long to bring him back down.Hopefully

the MTX

> injections will help him oral hasnt helped as much as wed like and he is

almost maxed

> out dosage wise.He is on 15mg and he can go to 20mg then add new drug,if the

shots can

> keep him on less meds,or from higher doses of steroids I am all for it.All I

can do is

> go forward and not look back and say what if? Becki and 3systemic

[Guest guest]

Hi,Georgina,its Becki.Thank you for the post,this is the first time you have

personally responded,except to welcome me.Due to the fact you started this

site,I have

learned more than I ever could surfing the net for JRA.I think you read some

things

wrong. is on 9mg prednisilone rheumy wanted to bring it up to 21mg,I think

I made

it sound like may be starting to flair.Personally I think his 2 bad weeks

was

just a fluke,he has had a mild cold.No fever just the sniffles and a little

cough on

and off .Due to your website and the things I have learned from it I called the

rheumy

back,and after going into a little more detail about how has been doing

this

week he agreed to just go to 12mg which is only 3mg more than what he has been

taking.Again if it wasnt for this site I would have just agreed with him and put

him

on 21mg,and hope it didnt take to awful long to bring him back down.Hopefully

the MTX

injections will help him oral hasnt helped as much as wed like and he is almost

maxed

out dosage wise.He is on 15mg and he can go to 20mg then add new drug,if the

shots can

keep him on less meds,or from higher doses of steroids I am all for it.All I can

do is

go forward and not look back and say what if? Becki and 3systemic

Georgina wrote:

> Hi Becki,

>

> Most of us, I think, have had this same thing happen. Not quite knowing

> if we're over-reacting or over-reporting some of our children's

> symptoms. I think it's still a good idea to report most things though,

> even if you decide to call back later to clarify. The doctor will be

> able to get a better picture of what's going on.

>

> Hmmmm ... As I type this, I'm thinking about how much things have

> changed for me regarding this kind of situation. My son Josh has had JRA

> for 6 years and 5 months now. I haven't phoned his pediatrician or his

> rheumatologist this week, even though I've had some concerns. We'll be

> seeing his rheumatologist on Friday morning though so I think it can

> wait till then. Plus, I think I'm still a little fearful/cautious of the

> outcome. Believe me, if it was 5 or so years ago, I would have already

> brought Josh in for an office visit.

>

> Josh has been having some pain and inflammation in both of his feet and

> in his left wrist. Why left, I'm not sure, as he's right-handed. It's

> been recurring ever since we made the last 1mg taper in his prednisone.

> Those used to be problem areas for . Those few joints had such a

> major impact on his daily living. He used to not even hardly be able to

> bear any weight on his feet. His pediatrician even took xrays at one

> point, believing that he had a fracture there because it was causing

> Josh so much pain. His little ankles used to get so swollen and have

> those darned bumpy nodules on them. His fingers and wrists hurt so bad

> at times that he found it hard to hold a crayon or pencil.

>

> His wrists and feet hadn't been bothering him for so long that I really

> was hoping that they would no longer be affected by arthritis. Ever

> again. At all ... but even after all this time, it seems like the

> steroids may have just been masking the problems. His blood work from

> last month showed a higher SED rate. Back up into the 30's again. Which,

> compared to the much higher SED rates he used to have (in the 130's!),

> still seems really good but compared to the more recent lower numbers

> (like an 11) it has me somewhat worried about a setback.

>

> Josh is handling it okay but he's not happily telling me, anymore, that

> his arthritis is gone He's been waking up a little stiff and sore

> again. He's had no qualms about taking his meds. He even has begun

> taking the evening dose a little earlier I've noticed, as his feet hurt

> so much by the end of the day. I had hoped that he was feeling a little

> under the weather just because he was sick with sinusitis and that once

> he was finished with the antibiotics, his arthritis symptoms would

> disappear. Well, not quite yet.

>

> Oh .... but getting back to your questions about MTX injections .... I

> may very well be biased but I'd opt for an increased dose of MTX over

> corticosteroids, any day. My son started MTX orally immediately and we

> didn't switch to injectable for almost 5 years. I wish we had done it

> sooner because he responded so much better to injections than to the

> pills. I think we may have had a much easier time reducing his steroids

> if we had gone that route.

>

> I know you must be so happy that the doc has agreed to just a milligram

> increase in steroids. For us, we always had to raise it much higher to

> have the same effect that we had on a lower dose. If we were tapering

> down from 10 to 9mgs and the JRA started to flare, going back up just to

> 10 wouldn't help. We'd usually need to double up the dose and start over

> from there, as soon as things quieted down again and we could begin

> reducing once more. That's just how it was for us, though. Everybody is

> different. The lowest dose that causes a positive response would be the

> better way to go, I'm sure. So I do wish you all the best, as you and

> the doctor try to figure out the best solution for . You will both

> be in our thoughts.

>

> Take care,

> Georgina

>

> Allan Larson wrote:

> >

> > Hi,its Becki,talked to rheumy this morning about .I get really nervous

> > sometimes and I dont say everything I want to or it comes out wrong,anyway I

> > think I made Dave sound worse than what he really was,s symptoms tend

to

> > follow a 2week pattern then change.He wanted to bring up from 9mg

> > prednisilone to 21 mg.He also moved his appointment up 1.5weeks to show me

how

> > to do MTX injections.Well after about an hour of thinking things over I

called

> > him back.See had 2 really good weeks prior to his last

appointment,rheumy

> > said MTX was starting to work(barely)he should do even better over next

> > 8weeks,This was on a monday,everyday he got a little worse more joint

> > involvement that would come and go all day long.Before it was only in the

> > morning then hed be fine all day after taking pred then he would have

problems

> > at night.the bad lasted 2weeks what I didnt tell rheumy is that this week

things

> > have calmed down again,only has problems first thing in morning then again

at

> > night.No problems duiring the day.this morning he didnt even want to take it

> > because he wasnt in any pain it is 10:45 and still no problems.Called Rheumy

> > back really conserned that I might have overexaggerated and that hes doing

> > better this week,rheumy agreed that since he is coming in to see him this

> > monday,he would be willing to comprimise.We are only going to raise him up

to

> > 12mg.What a huge differance.He still has to take his MTX orally this fri.

but

> > hopefully when he starts injections he will respond better. Becki and

> >

> >

> > wrote:

> >

> > > Hi Becky

> > >

> > > My daughter is 9 and we switched to injections just about 2 years ago

after

> > > nearly 5 years on pills. The switch was tough to make-- just the thought

of

> > > sticking my baby every week was awful! But once the decision was made it

> > > went well. We use emla to numb 's arm before the injection, though I

> > > would suggest using an ice cube first. The ice numbs the skin quickly and

> > > then you can just get it done. The emla takes time, so the kids have time

to

> > > think about what's going to happen. I've tried to get to try the

ice,

> > > but she doesn't want to change things. Anyway, 's response to the

> > > injections has been good. She was on 20mg orally, but we've been able to

> > > maintain things at 15 by injection. She also is able to enjoy her weekends

> > > now, rather than throwing up every weekend. If the rheumy is in agreement,

I

> > > would definitely try the injections, maybe even at a higher dose, before

> > > going back up on the pred. Methotrexate, while having some risk of side

> > > effects, certainly is far better for the kids than long term steroid use.

As

> > > many of the moms will tell you, the goal with steroids is to use as little

> > > as possible for as little time as possible.

> > >

> > > Let us know what you and the rheumy decide to do.

> > >

> > > Liz

> > > MTX injections

> > >

> > > > Hi,its Becki.Dont feel like rambling,but have feeling once i start i

> > > > wont be able to stop. is 3yrs old 39in 44lbs and he has been on

> > > > 9mg prednisilone for 32 days,he is also on 15mg MTX orally he can go

> > > > up to 20mg then have to add something else.About 1month ago Dave did

> > > > alot better,Rheumy said MTX was starting to work but it would take

> > > > about 8weeks for maximum affect.He has been going down hill ever

> > > > since.Alot more joint involvement that lasts for longer periods of

> > > > time.The other day he went to bathroom and he couldnt turn the

> > > > doorknob to get himself out.Found him screaming and crying at the

> > > > other end of the house.He was a wreck,it really scared him.Anyway

> > > > rheumy mentioned a couple of months ago that may have to go to

> > > > MTX injections,they are supposed to work better.Well I have found

> > > > myself in a place where I dont know what to do.All I think about is

> > > > and what we need to do to make him feel better.He has lost 2lbs

> > > > since he was dropped from 12mg pred do we raise it back up or raise

> > > > his MTX again?I feel like a mean mommy because I think I want to go

> > > > ahead and try the injections,before rheumy says to.Anything to make

> > > > him feel better(and no I dont mean I will just start doing it).How did

> > > > your kids respond when they were switched from oral to

> > > > injections,Iwould really like to hear anything you have to say.

> > > > Becki and 3systemic

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>