Re: update...and some questions about remission/methotrexate

[Guest guest]

Kathy-

Could be the mtx. My daughter's inflammation disappeared seemingly

overnight after she'd been on mtx for 6 weeks. It has never come back.

Generally, I

believe the idea is to continue the mtx for at least one year after no

symptoms have been seen. Re her skipping doses and having no symptoms . . .

mtx

builds up in the system, so one missed dose wouldn't necessary be expected to

produce inflammation. I wouldn't yank her off of it too soon. . . especially

if she's having no problems with it. Why jinx it?

Best of luck,

(Diane, 7, pauci in remission, iritis)

[Guest guest]

Diane,

Thanks, that is exactly the kind of information I was looking for. You're

right about stopping the meds, thought....I definitely don't want to jinx this!

Congrats on your daughter's remission!

Kathy

dbornscheu@... wrote:

Kathy-

Could be the mtx. My daughter's inflammation disappeared seemingly

overnight after she'd been on mtx for 6 weeks. It has never come back.

Generally, I

believe the idea is to continue the mtx for at least one year after no

symptoms have been seen. Re her skipping doses and having no symptoms . . . mtx

builds up in the system, so one missed dose wouldn't necessary be expected to

produce inflammation. I wouldn't yank her off of it too soon. . . especially

if she's having no problems with it. Why jinx it?

Best of luck,

(Diane, 7, pauci in remission, iritis)

[Guest guest]

Kathy,

Reading your post was just like seeing my very own words and thought

process related to Aundrea. We went through a very similar thing

with Aundrea. She started methotrexate and within a few months she

was doing awesome. It was like you had no clue that she even had

arthritis. Naturally, we thought the same thing as you. Could the

arthritis have been a temporairy thing related to a virus. Maybe

she had outgrown it. When we questioned the doc about it, he said

you never really know if the medicine is making the difference of if

she could come off of it successfully unless you make the attempt.

I read lots of literature and studies on when to discontinue mtx and

there was no set schedule. Some docs give it a year without any

symptoms and then take the patients off cold turkey. Others begin

the slow process of weaning them off over several months. There was

no data to indicate that one method of withdrawl was better over the

other. The one thing I did see was that in most of the studies that

I read there was a 50% likelihood that the arthirtis would resurface

within one year of withdrawl from methotrexate. Determining who

would be in that 50% was also not clear, although those that had

suffered longer with jra and took longer to achieve control did have

a higher chance of flaring again.

So we took the plunge with Aundrea and took her off mtx last

December. We opted to do the weaning and decreased it over a 3

month period. Everything was great for 4 months. We thought she

had indeed " outgrown " jra. In April things began to resurface.

Stiff joints in the mornings and then later painful joints, fatigue

etc.. By July she was having daily pain and we restarted the mtx.

According to the studies most kids that had had good results with

mtx. could restart it and expect to again have good control with the

drug. For Aundrea she hasn't done as well as she did when she first

started mtx. We have had to increase the dose and still there

remains joint pain. She has missed more school this year than ever

before. Around 6 weeks. She is now going to school half time with a

homebound tutor. We are waiting to see a pedi rheumy for a

consultation to determine what course of treatment we need to pursue

for her.

I guess in the end you just never know how your child will do once

you take them off the meds. But, from my experience I would have to

suggest that as long as she is doing so well and having few adverse

affects, I would encourage you to just stay the course. I believe

in time there will be more studies that will give a better direction

as to how long to maintain treatment with a course of medication and

when and how that med should be withdrawn.

Sorry, for the long disertation but I feel as if I have walked in

your shoes and I wanted to share with you what our experience was

with the decision to discontinue treatment of mtx and then the

struggles that we have faced since restarting it.

Blessings,

(aundrea 11 systemic jra/gerd)-

-- In , Momof2gr8kids <sk8ingmomof2@...>

wrote:

>

> Hi everyone. I hope you all had a wonderful holiday season. Our

family has had a VERY busy couple of months, and to be honest, I

haven't had much of a chance until now to even read list messages,

let alone post.

>

> has been taking weekly Methotrexate injections since

right after the JRA conference in July. Thank the Lord, she has not

had one flare since. I've been waiting for the ball to drop....but

so far it has not. We have even had a few weeks where we missed the

injection (just forgetting...not intentional) and we haven't seen

any adverse effects. The last visit in November, her rheumy said he

didn't need to see her for 4 months. I am grateful for any amount

of time we are given flare-free, but all of this has made both my

husband and me question whether perhaps the arthritis was a

temporary thing (response to her vaccination, a virus, ??). It

just seems almost unbelievable to me that she'd respond so well so

quickly. The only swelling left is in a few of her fingers, which

were the first to show the signs. I don't want to be in denial, but

I also don't want to be taking meds unnecessarily. Has

anyone here heard of this happening (temporary arthritis),

> or am I just being too hopeful and the MTX is doing that good of

a job for her? The change has just been so drastic...she could

barely walk at the JRA conference, and afterward she was rolling to

get from place to place, and now....she walks on her tip toes and

jumps, climbs and runs like nobody's business.

>

> I asked the rheumy last time when we would say she is in

remission, or how they know when to cut back on the meds and really

didn't get a firm answer. I would love to hear any insight anyone

might have.....positive or otherwise...

>

> Thanks,

> Kathy

> mom to , 2, poly

> and Luke, 5 next week!

>

>

>

> ---------------------------------

> Want to start your own business? Learn how on Small

Business.

>

>