Re: First day on methotrexate--what to expect?

[Guest guest]

Dear Annie:

Our son, Carrick, (onset 9, now 12) has been taking MTX since diagnosed. He

was given prednisone for the first 2 weeks to offset that it takes a few

weeks for the MTX to build up in your system. He gets an injection once a

week.

Our doctor said this was the most effective way to take it. He didn't even

give a choice between injection and oral because he said it was so much more

effective. So, we bucked up and give our son weekly injections. You get

use to it, especially when you are told this is it -- period.

Side effects we have experienced are: head aches occasionally, a small loss

of hair once, lots of cold sores in his mouth that was addressed by taking

folic acid (B-12) tablets regularly. You should ask about that right away and

be ready to get some when she develops the cold sores.

I understand that the MTX orally bothers your stomach, but I don't know that

for sure.

They told us he would be taking the MTX for 9 months to 2 years. At 2 years

they began to incrementally reduce the dosage. But, he is still on it.

My best wishes for a smooth journey for your daughter and you.

M. J. O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114

[Guest guest]

Hi, my name is Lynne and my son Chandler, 11 (poly) has been on

Methotrexate for four years (ahortly after finally being diagnosed).

We did the methotrexate alone for several months with some, but

little, improvement. Then we added Enbrel, which has turned out to

be our lifesaver! Side effects of the methotrexate have been minor,

but to have our little guy back among the living, it's worth it! I

have done a lot of research on both drugs. We also have a very close

relationship with our rheumotologist (Duke Children's), and when

going on these drugs, I asked her to take off her doctor's hat and

put on her mommy's hat and tell me what she would do if it were her

son. We do have to watch for infections and have had to go off of

the meds a couple of times due to low white blood counts. But his

quality of life is back, where before, if not diagnosed when he was,

I honestly believe we would be wheelchair bound by now! I hope this

helps. I think a lot of what we have to do as parents is to weigh

all the pros and cons and just make the best decision that we can.

Whatever you choose, you have support here. Good luck!

>

> nne (6yo, pauci) was given methotrexate for the first time

today

> (12.5 mg once a week, oral form). I haven't given it to her yet and

> to tell you the truth I'm a little worried about it. The rhumy

> assured me that it's safe and may help her tremendously, but we may

> not know for 5 or 6 weeks (?) He rulled out the steroid treatment

> because those shots are not as effective in the ankle (?) which is

> where most of her swelling is.

>

> I'm looking for feedback on how the next couple of days might go.

The

> nurse practitionner mentioned nausea and overall feeling of not

being

> well for a day or two. I should have asked if this was going to

> happen every time we give it to her. Is that the drug that makes

kids

> more susceptible to catching colds and other crud like that or am I

> confusing it with something else?

>

> The blood draw for liver functions didn't go too well, but she

> bravely fought the tears and didn't make too much of a fuss so I

got

> her whatever she wanted as a reward, which happened to be a cold

> Sprite and a massive box of pop tarts. Ah, kids...!

>

> You know, I feel a little bad rushing here every time some little

> thing happens to us because in the grand scheme of things she's not

> very ill. I do read all the messages about the kids who are

> struggling and I think of you guys often. Brave kids out there, and

> brave parents too. Cyber hugs to you all.

>

> Thanks for the feedback!

>

> Annie & nne

[Guest guest]

Hi Annie-

We have been very fortunate not to have had problems with MTX side effects.

Some kids get mouth sores, which can generally be alleviated by either daily

folic acid or a weekly folinic acid (which is called leucovorin). Also, some

kids have problems with stomach upset. Caitlin has always been on Pepcid in

conjunction with her Naprosyn, so that probably helped her stomach. If nne

has any stomach probelms, they can probably give her something easily for that.

MTX does compromise the immune system, so in general, you'll have to watch out

for signs of infection. But, in three years, this week was only the first time

she came off of it due to that issue.

I'd say you made a great choice in giving the drug on Friday. We've always done

that, because sometimes Caitlin is extra tired after the MTX. The weekend gives

her a chance to grab an extra nap or two if necessary. Other than that, the MTX

whether oral or by injection never caused any major problems (Thank God!). I do

credit it with slowing the progression of her joint damage and I've never been

sorry for trying it.

This is only one view and I'm sure you'll get many others....

I hope nne gets some relief. It takes some time to see results with this,

but hopefully before the end of the year, things will be looking promising!

Best hopes for you-

Colleen (mom to Caitlin, 6, systemic)

jolimont_2000 <jolimont@...> wrote:

nne (6yo, pauci) was given methotrexate for the first time today

(12.5 mg once a week, oral form). I haven't given it to her yet and

to tell you the truth I'm a little worried about it. The rhumy

assured me that it's safe and may help her tremendously, but we may

not know for 5 or 6 weeks (?) He rulled out the steroid treatment

because those shots are not as effective in the ankle (?) which is

where most of her swelling is.

I'm looking for feedback on how the next couple of days might go. The

nurse practitionner mentioned nausea and overall feeling of not being

well for a day or two. I should have asked if this was going to

happen every time we give it to her. Is that the drug that makes kids

more susceptible to catching colds and other crud like that or am I

confusing it with something else?

The blood draw for liver functions didn't go too well, but she

bravely fought the tears and didn't make too much of a fuss so I got

her whatever she wanted as a reward, which happened to be a cold

Sprite and a massive box of pop tarts. Ah, kids...!

You know, I feel a little bad rushing here every time some little

thing happens to us because in the grand scheme of things she's not

very ill. I do read all the messages about the kids who are

struggling and I think of you guys often. Brave kids out there, and

brave parents too. Cyber hugs to you all.

Thanks for the feedback!

Annie & nne

[Guest guest]

Aubrey started Metx Feb 2004 the same day she was diagnosed with Jra....Aubrey

has Severe Uvietis so that is why they put her on it her Uvietis is almost

control but we started on 10mg of Metx now on 20mg oral of it now, we may have

to go up to 25mg. But we will see. She has always gotten sick easily and being

on 20 mg of metx. she definitely get sick more often, if she gets a fever she

will go into the doctor if it continues to increase with it.

A few weeks ago, I had to take her into the doctor she had around 25 bruises all

over the lower part of leg, they checked for clotting and 7 other labs,

everything turned out ok. Her joint was completely controlled in 5 months but

the Iritis/Uveitis still lingers. I think any parent that goes on meds you are a

little nervous.

Aubrey during sick time of the year is not required to wait for her eye drops in

the nurses office she goes to another room because of the germs.

Wish you luck, we all have been there. Terri

First day on methotrexate--what to expect?

nne (6yo, pauci) was given methotrexate for the first time today

(12.5 mg once a week, oral form). I haven't given it to her yet and

to tell you the truth I'm a little worried about it. The rhumy

assured me that it's safe and may help her tremendously, but we may

not know for 5 or 6 weeks (?) He rulled out the steroid treatment

because those shots are not as effective in the ankle (?) which is

where most of her swelling is.

I'm looking for feedback on how the next couple of days might go. The

nurse practitionner mentioned nausea and overall feeling of not being

well for a day or two. I should have asked if this was going to

happen every time we give it to her. Is that the drug that makes kids

more susceptible to catching colds and other crud like that or am I

confusing it with something else?

The blood draw for liver functions didn't go too well, but she

bravely fought the tears and didn't make too much of a fuss so I got

her whatever she wanted as a reward, which happened to be a cold

Sprite and a massive box of pop tarts. Ah, kids...!

You know, I feel a little bad rushing here every time some little

thing happens to us because in the grand scheme of things she's not

very ill. I do read all the messages about the kids who are

struggling and I think of you guys often. Brave kids out there, and

brave parents too. Cyber hugs to you all.

Thanks for the feedback!

Annie & nne

[Guest guest]

Annie,

I see you already have some good responses to your question, but

I'll add a couple things. Firstly, methotrexate is the " gold

standard " for treatment of JRA. It is the most common DMARD

prescribed. It has been around and studied for 50 years or so. It

has actually been studied in children also. In general, mtx is very

safe to treat JRA. I think something like 70-75% of people respond

well to it. If the stomach gets upset, you can bypass the digestive

system and do the shot. There is topical aenesthetic cream you can

put on the injection site that makes the shot no big deal, if you

have to go that route one day.

Personally, Hunter has been on mtx for a little over a year and

we've had no issues. We started oral, then squirted the mtx. liquid

into juice, then went with the shot. Knowing what I know now, I

would have gone immediately to the shot at the beginning, but

hindsight is 20/20, right? That would have saved Hunter 4 months of

serious pain.

We do the shots on Sat. nights, so he goes right to bed afterward

and sleeps through any issues there even might be.

I hope mtx does the trick for you.

Stacia and Hunter 8 systemic, iritis