mtx

January 30, 2000

In a message dated 1/30/00 1:54:29 PM Eastern Standard Time,

william.e.price@... writes:

<< When I was in Seattle the doctor said that they don't give children folic

acid with mtx >>

I don't know about young children, but they do give it to teenagers. I

started taking folic acid when I was 13-14 and on MTX.

cheers

Jenni

January 30, 2000

Hi ,

I'm not sure about not giving folic acid to children. Our pediatric

rheumatologists routinely prescribe it. The other part of your message,

about starting kids on higher doses, sounds promising. I think I

remember reading that there was a better than normal response to higher

beginning doses. Maybe the doctor first wants to monitor n's

response and won't prescribe folic acid unless your daughter has some

side effects, like nausea or thinning hair. Josh weighs about 67 pounds

and he takes 15mgs MTX weekly,

sub-q. Will n be having it in pill form or by injection?

Take Care,

Georgina

> WILLIAM PRICE wrote:

> When I was in Seattle the doctor said that they don't give children

> folic acid with mtx. I know that most adults take it. The doctor

> said that the children's liver was better at working and that they

> didn't need it. She also gives children higher doses of methotraxate

> then adults. She said that n would get 25mg and she only weighs

> 66 pounds. Does this sound to familiar to anyone who has experience

> with this drug? Thanks,

January 31, 2000

,

hello! Sammy's dr. also doesn't give folic acid because not every person

needs it. And until she needs it they will hold off giving it to her.

Sammy is 3 1/2 years old and she is up to 5mg a week (she is 26 pounds).

~Amy

mtx

From: " WILLIAM PRICE " <william.e.price@...>

When I was in Seattle the doctor said that they don't give children folic acid

with mtx. I know that most adults take it. The doctor said that the children's

liver was better at working and that they didn't need it. She also gives

children higher doses of methotraxate then adults. She said that n would

get 25mg and she only weighs 66 pounds. Does this sound to familiar to anyone

who has experience with this drug? Thanks,

------------------------------------------------------------------------------

April 17, 2000

Hi Bonnie,

Wow!!! Glad to hear all went well with Alana's injection!!! I wasn't

able to give Ashton her's Friday but am ready & set for this week!!! Lot's of

practice on an orange!!! ha ha ha Hearing that you did it gives me even

more confidence!!! Ashton did however do very well with her injection this

week as far as side effects go. The dr told us to make sure she drinks before

& after the injection. She was alittle tired but Nothing like the oral MTX.

My prayers are with you ...I'll let you know how I do this weekend with

Ashton's injection ...we will be out of town so I HAVE to step up & do it!!!

How's Alana doing otherwise?? Talk to you later ....Kris

April 19, 2000

Hi Bonnie,

Glad to hear that you were successful with the MTX injection. Bet that

was a skill you never thought you'd master! I've heard about that

before, about practicing with a grapefruit. And you don't even hear an

ouch You know, I don't want to speak too soon cause we never really

know what to expect but in these recent weeks it seems like Josh is

having a better response, or less of a bad response, as far as the

weekly injection goes. He used to get super tired afterwards, sometimes

even falling asleep in the car on the way home. And it's only 5-10

minutes away! And he'd be very fatigued the next day too, usually till

the afternoon time. Lately though, it seems like it's been more

manageable for him. Maybe it just takes some time for the body to get

accustomed to it? 's first injection was on August 19th. Had to go

check that. Doesn't seem like it's been THAT long! Geez, 8 months

already taking it by injections. He started out with the pills, at

7.5mgs, way back in June, 1995.

Weird thing is that he complained about the way the oncology clinic,

where we have it done, smelled. He started pulling his shirt up over his

nose and mouth to try to avoid it. And one day we went into a little

room off the side to have it done. Then the nurse gave him one of those

paper masks that cover his nose/mouth. I don't know if this has made any

difference at all, really, but something seems to have. Well, tomorrow's

the next shot and he might ~again~ get really tired afterwards. Only

time will tell. Something has changed, though. For the better. So maybe

the fatigue won't be so bad for Alana, with the passgae of time, too?

Take care,

Georgina

Hi,

Well we did it, I gave Alana the injection of MTX on Friday night with

no problem. I practiced a lot that afternoon in a grapefruit, (I swear

the

grapefruit must've had a glass of water in it.

Anyway no problem, which is a relief, now I can do it right before she

goes to bed since her arm hurts a little while the meds are being

absorbed

into the body, but she said the injection didn't hurt so that was good.

I wish that the mtx didn't have the side effect of knocking Alana on her

ass for the weekend. She basically sleeps almost the entire day on

Saturday, she'll sleep till 12:30 and go back to sleep from 2:30 till 5,

what a

bummer, and she's still tired on Sunday, Oh well, what can you do.

Kris, did you do the injection yourself?

Bonnie

emla and metho

Hello Angel:

When Mickey got sick with metho, she was still on the oral pills.

We would crush them up and mix them with

applesauce. We gave it to her before bedtime on Friday at first.

Sometimes she was fine, but often she was

sick most of the next day. Sometimes just feeling like throwing

up, sometimes she actually would, for most of

the morning, couldn't even keep water down, let alone her regular

meds. A few times she even woke up sick in

the middle of the night, and I'd be up with her until morning.

After this happened a couple of times, we

started giving her a children's gravol an hour before the metho.

That helped a little, at least she would be sick

in the night, but Saturdays continued to be rough, she'd feel she

was going to be sick, was lethargic - not her

usual self. When they changed her over to the injected metho, the

nausea reaction pretty much stopped. It only

happens very very rarely now, usually when she's in worse flare

already.

Mickey has never gone into a meds-free remission... though we

keep hoping. When she has had joint injections,

it has tended only been to clear up localised pain, swelling and

inflammation in the specific joints. Usually just

her knees and ankles, a couple of times also her wrists and

elbows, and once also her hips. With that one we

had to stay overnight in the hospital with her, it was important

she put no stress on the hip joint at all, she

wasn't even allowed to sit up. Luckily she absolutely loves

having books read to her and she enjoyed having me

at her total beck and call! It helped make up for it. Anyway,

those injections really did the trick with the

localised swelling and inflammation, but they kept the prednisone

levels where they were... I have to admit I'm

not totally clear on exactly which symptoms the pred controls,

and which the anti-inflammatory controls. I

know the metho was in the hopes of being able to reduce the

prednisone.

Something I find really hard is how often the injections mean she

gets " put under " . I know there can be

adverse affects, I know it is always a risk. Luckily, the doctors

at Toronto Sick Kids are wonderful, and have

a fairly sterling reputation. Still - well I'm sure you all know.

It's still a worry. If anyone knows more about

the risks, or where I could find more information, I would enjoy

that. The docs there always let me hold her

on my lap until she is asleep, she is a lot calmer that way. And

they bring me back in before she wakes up

again. She tends to wake up totally disoriented and panic

stricken unless she sees me, and she is usually very

nauseated for a few hours. It's hard to see her like that but I

know it makes it easier on her.

Regards,

Lynn Young ,

Kincardine, Canada

May 23, 2002

Eli,

MTX is generally monitored by lab results (blood draws). Frequency

varies depending on your doc. Liver biopsies are not done on a whim.

They would only be done if there is definite need (suspicion of

cirrhosis, liver cancer etc) Too much reading can be frightening, not

always enlightening. The dosage these children and even adults take

for JRA/RA is low in comparison to the high doses used for cancer

treatment. Not that there are not side effects and need for

monitoring but the risk is lower than at high doses. If the person

had elevated liver enzymes, the med may be stopped and other tests

may be needed. Usually they try non-invasive tests such as CAT scan,

MRI, ultrasound.

e

May 23, 2002

Hi it is Carolyn, I have been on Methotrexate now for 13 1/2 years and as

long as my blood work is fine, my rheumy does not see the need for a biopsy.

Hope that helps. Have a great day Carolyn

May 23, 2002

Hi Eli,

No na did not have to have a biopsy. When her blood work came back and the hospital faxed it to shriners Dr. Mier wasn't there and thats when they called the Dr. that the nurse was telling us was so good from Ohio. Anyway he said just not to give her the dose until her liver funtions were better. I hoped that helped. My prayers are with you Jona mom of Bianna 2 poly

skyley8@... wrote: Hi Everyone, Have any of you with kids on MTX had to have a liver biopsy due to long term use? Just doing some reading and I noticed that liver biopsies are recommended after long term use. Thanks, Eli and Riley 4 poly

May 23, 2002

Thank you e, My husband read that and got a bit nervous. Have a nice day.

Eli

May 23, 2002

Eli,

one of the good things about MTX is that it has been around for so long that

they know a whole lot more about it now then they used to.Used to a couple of

elevated liver tests and they would do a biopsy,thats not the case anymore.Now

you read after you have taken so much of it they do biopsies,I dont think thats

true anymore either.Sometimes the tests can come back elevated just because the

MTX was given to close to the time they did the labs.

Becki and 3systemic

cybersis40@... wrote:

> Hi it is Carolyn, I have been on Methotrexate now for 13 1/2 years and as

> long as my blood work is fine, my rheumy does not see the need for a biopsy.

> Hope that helps. Have a great day Carolyn

>

May 23, 2002

Hi Georgina,

Riley weighs 43 lbs and her dose is to be 10 mg. Thanks for all of the helpful advice. You're wonderful.

Eli and Riley

May 23, 2002

Hi Eli,

Josh has been taking it every week for 7 years. So far, he has not had any side effects that warranted this kind of concern. For Josh, the side effects have been mild. He gets a little bit more tired and his saliva has a different taste, which makes him want to spit. His dose is 15mg.

Aloha, Georgina

----- Original Message -----

From: skyley8@...

Hi Everyone, Have any of you with kids on MTX had to have a liver biopsy due to long term use? Just doing some reading and I noticed that liver biopsies are recommended after long term use. Thanks, Eli and Riley 4 poly

January 25, 2003

> I have been taking MTX for 2 weeks. I have diareha (sp) and a rash on one

> side of my face, plus a mild headache and fatigue....

> Anyone else have this, ever ?

> Pris

I get diarrhea when I take it without food-- (I take 6 tablets once a

week....)

Fatigue.. who knows.....!!!!! I have so much fatigue I have given up

trying to figure out which drug or condition is causing it.. I just try to

go with the flow from day to day........

Liz

~~~

" I've learned that people will forget what you said, people will forget

what you did, but people will never forget how you made them feel. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

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January 26, 2003

Hi Priscilla MTX can kill the " good " bacteria in your intestines. You can

buy some acidophilus and bifidus capsules at your local health food store.

This should help take care of the diarreah. As for your other symptoms if

they don't go away after awhile, it might be a sign that you might be

allergic to MTX. If you do not want to take the pills, yogurt and blue

cheese (if you can stand the smell) have similar bacteria that helps stop

diarreah. Good luck and good health, Matt.

May 12, 2003

I never had bad headaches until starting MTX about 4 years ago. I am on the

injectable form which helps the nausea side effect, but I have had to use

Imitrex injections to give me some control over the headaches. They do not

come exactly on the day of MTX or with any type of predictablity, but they

did start right after beginning MTX. They also seem to come on after having

ANY alcohol. I mean even a little wine with dinner or anything. Which

stinks, but helps me stick to my rheumy's rule of only one drink per week

while on MTX. Heck, at $40 per injection of Imitrex for one headache. I

have to really be wanting a drink to justify that. Thank God for insurance.

Stay Healthy

May 12, 2003

I too have had a serious problem with headaches, especially on MTX. My

rheumy did give me a good pain reliever, but I don't remember the name of it

I also rely on Excedrin Migraine at times too. This does very good for

me. As for the nausea, I still get a lot of it on the injectable form. It

s so bad now, that even the smell of the alcohol rub pad makes me sick to my

stomach. I can actually think of the smell and get nauseated. It's those

good all head games, I guess.

Love, Sue #2

-- Re: MTX