RE: [JRA]Stacia (was Re: Methotrexate Questions)

[Guest guest]

Hi, Stacia. I am curious about something you wrote - about doubling the

folic acid on the day Hunter takes his MTX. We were told not to take it

all on that day or the next. I was curious if the dr told you to do

double and why. Thanks, Michele (16,pauci & spondy)

Re: Methotrexate Questions

Hi Missy,

As I read the latest " kids Get Arthritis Too " publication that just

came in the mail this week, there's an article talking specifically

about mtx. It is the longest lived RA drug on the market (over 50

years) and has very well documented both short-term and long-term

side affects. (Compared to some of the biologics that have been

around 3-5 years, there may be short-term knowledge, but no long- term

knowledge or side affects. Relatively speaking, mtx. is a very

safe bet!!)

Whether you take oral or subcutaneous injections, the side affects

are supposed to be the same -- mouth sores (folic acid combats

this), nausea(green tea, ginger ale, motion sickness meds. can

help), potential liver damage. Some people have nausea with oral

but not with injections. When you're on it, you get bloodwork every

4 - 8 weeks, depending on your rheumy. This is to monitor the liver

enzymes and function. If there ever comes a problem, you just stop

using it and move on to something else.

My son has been on it for 6 months and has tolerated it very well,

no side affects. As already mentioned by someone, taking folic

acid supplements is key. We double the folic accid dose the day of

and the day after injection. We have had really good results so far

(knock on wood.

In general, I have been told and read in many places that mtx. is

the first line of defense (unless there's a really specific reason

not to take it) of all the DMARD class of drugs.

Hope this helps and good luck,

Stacia and Hunter, 7, systemic

> Hi Group,

> Well we had a Rhem. Appt. last week and it confirmed what we had

been thinking. The Voltaren alone is not working well enough. So

Tyler's Dr. put him on Methotrexate, which honestly scares me to

death. After reading all the side effects I was even more terrified.

He took the first dose Friday after dinner and a couple of hours

later was really dizzy and tired. Saturday he was quezzy and had

diarrhea. Then Sat. night he felt really sick at his stomach, but

never actually got sick. Are these the same side effect that your

children have experienced? Do they lessen as the treatment goes on

or do they remain the same every Sat.? The Dr. said he may have to

take it for a year? Is that what you guys have experienced?

> Sorry to ramble on, but I am very nervous about Methotrexate.

Thank goodness for a group like ya'll. The Dr. can tell you

everything and give you everything to read, but it really helps

talking to people who have been there first hand. I really

appreciate this group.

>

> Thanks for listening,

>

> Missy and Tyler (Spondy, 10)

[Guest guest]

Im curious about this too.... I was told to skip the folic acid on the day of the MTX. We use the folic 6 out of 7 days a week.

Hugs Helen Mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "Tepper, Michele" >Reply- >>Subject: RE: Stacia (was Re: Methotrexate Questions) >Date: Thu, 26 Feb 2004 11:12:04 -0600 > >Hi, Stacia. I am curious about something you wrote - about doubling the >folic acid on the day Hunter takes his MTX. We were told not to take it >all on that day or the next. I was curious if the dr told you to do >double and why. Thanks, Michele (16,pauci & spondy) > > Re: Methotrexate Questions > > >Hi Missy, > >As I read the latest "kids Get Arthritis Too" publication that just >came in the mail this week, there's an article talking specifically >about mtx. It is the longest lived RA drug on the market (over 50 >years) and has very well documented both short-term and long-term >side affects. (Compared to some of the biologics that have been >around 3-5 years, there may be short-term knowledge, but no long- term >knowledge or side affects. Relatively speaking, mtx. is a very >safe bet!!) > >Whether you take oral or subcutaneous injections, the side affects >are supposed to be the same -- mouth sores (folic acid combats >this), nausea(green tea, ginger ale, motion sickness meds. can >help), potential liver damage. Some people have nausea with oral >but not with injections. When you're on it, you get bloodwork every >4 - 8 weeks, depending on your rheumy. This is to monitor the liver >enzymes and function. If there ever comes a problem, you just stop >using it and move on to something else. > >My son has been on it for 6 months and has tolerated it very well, >no side affects. As already mentioned by someone, taking folic >acid supplements is key. We double the folic accid dose the day of >and the day after injection. We have had really good results so far >(knock on wood. > >In general, I have been told and read in many places that mtx. is >the first line of defense (unless there's a really specific reason >not to take it) of all the DMARD class of drugs. > >Hope this helps and good luck, > >Stacia and Hunter, 7, systemic > > > > Hi Group, > > Well we had a Rhem. Appt. last week and it confirmed what we had >been thinking. The Voltaren alone is not working well enough. So >Tyler's Dr. put him on Methotrexate, which honestly scares me to >death. After reading all the side effects I was even more terrified. >He took the first dose Friday after dinner and a couple of hours >later was really dizzy and tired. Saturday he was quezzy and had >diarrhea. Then Sat. night he felt really sick at his stomach, but >never actually got sick. Are these the same side effect that your >children have experienced? Do they lessen as the treatment goes on >or do they remain the same every Sat.? The Dr. said he may have to >take it for a year? Is that what you guys have experienced? > > Sorry to ramble on, but I am very nervous about Methotrexate. >Thank goodness for a group like ya'll. The Dr. can tell you >everything and give you everything to read, but it really helps >talking to people who have been there first hand. I really >appreciate this group. > > > > Thanks for listening, > > > > Missy and Tyler (Spondy, 10) > > > > >

[Guest guest]

Where in Idaho are you?? I live in Nampa, ID...who is Hunter's doctor?

Bronson sees Dr Knibbe in Boise.

Jodi

>From: " staciar101 " <staciar@...>

>Reply-

>

>Subject: Stacia (was Re: Methotrexate Questions)

>Date: Tue, 02 Mar 2004 23:19:38 -0000

>

>

>

>Sorry for the delayed response...my mom is visiting from Ohio,

>(we're in Idaho), so it's a really special visit and I haven't been

>on the computer much in the last week.

>

>Hunter is 7 and about 65 pounds. The rheumy said to give him at

>least 400mcg of folic acid daily. That is the exact amount in the

>daily multivitamin all my kids take. He didn't say anything about

>increasing or decreasing the dose on mtx injection days.

>

>I remember reading something from another mom here that her doctor

>said to double it the day of and after. I didn't see how it could

>hurt, so just to be safe he's getting enough, I decided to double it

>for the day of and day after injection. I just give him 2

>multivitamins.

>

>If I'm way off base here, someone please enlighten me.

>

>Stacia and Hunter,7,systemic

>

>

> > > Hi Group,

> > > Well we had a Rhem. Appt. last week and it confirmed what we had

> > been thinking. The Voltaren alone is not working well enough. So

> > Tyler's Dr. put him on Methotrexate, which honestly scares me to

> > death. After reading all the side effects I was even more

>terrified.

> > He took the first dose Friday after dinner and a couple of hours

> > later was really dizzy and tired. Saturday he was quezzy and had

> > diarrhea. Then Sat. night he felt really sick at his stomach, but

> > never actually got sick. Are these the same side effect that your

> > children have experienced? Do they lessen as the treatment goes on

> > or do they remain the same every Sat.? The Dr. said he may have to

> > take it for a year? Is that what you guys have experienced?

> > > Sorry to ramble on, but I am very nervous about Methotrexate.

> > Thank goodness for a group like ya'll. The Dr. can tell you

> > everything and give you everything to read, but it really helps

> > talking to people who have been there first hand. I really

> > appreciate this group.

> > >

> > > Thanks for listening,

> > >

> > > Missy and Tyler (Spondy, 10)

> >

> >

> >

> >

> >

[Guest guest]

Hi,

My son also takes folic acid (1mg) every day except for the day he

receives Methotrexate. Josh does feel some dizziness and queeziness

associated with the MTX shot (much less so than when he took it by pill

form) and has a sort of saliva problem after taking it. Hard to

describe, but it makes him salivate more than usual, I think, and there

is a strange taste (maybe metallic?) or feel in his mouth.

Still, the benefits have far outweighed the drawbacks. It's been very

helpful for him, keeping the beast at bay.

Take Care,

Georgina

Helen Burger wrote:

> Im curious about this too.... I was told to skip the folic acid on the

> day of the MTX. We use the folic 6 out of 7 days a week.

>

> Hugs Helen Mom to (6,systemic)

> >From: " Tepper, Michele " >Reply- >To:

> >Subject: RE: Stacia (was Re: Methotrexate Questions) >Date: Thu,

> 26 Feb 2004 11:12:04 -0600 > >Hi, Stacia. I am curious about something

> you wrote - about doubling the >folic acid on the day Hunter takes his

> MTX. We were told not to take it >all on that day or the next. I was

> curious if the dr told you to do >double and why. Thanks, Michele

> (16,pauci & spondy) >

> Re: Methotrexate

> Questions > > >Hi Missy, > >As I read the latest " kids Get Arthritis

> Too " publication that just >came in the mail this week, there's an

> article talking specifically >about mtx. It is the longest lived RA drug

> on the market (over 50 >years) and has very well documented both

> short-term and long-term >side affects. (Compared to some of the

> biologics that have been >around 3-5 years, there may be short-term

> knowledge, but no long- term >knowledge or side affects. Relatively

> speaking, mtx. is a very >safe bet!!) > >Whether you take oral or

> subcutaneous injections, the side affects >are supposed to be the same

> -- mouth sores (folic acid combats >this), nausea(green tea, ginger ale,

> motion sickness meds. can >help), potential liver damage. Some people

> have nausea with oral >but not with injections. When you're on it, you

> get bloodwork every >4 - 8 weeks, depending on your rheumy. This is to

> monitor the liver >enzymes and function. If there ever comes a problem,

> you just stop >using it and move on to something else. > >My son has

> been on it for 6 months and has tolerated it very well, >no side

> affects. As already mentioned by someone, taking folic >acid supplements

> is key. We double the folic accid dose the day of >and the day after

> injection. We have had really good results so far >(knock on wood. > >In

> general, I have been told and read in many places that mtx. is >the

> first line of defense (unless there's a really specific reason >not to

> take it) of all the DMARD class of drugs. > >Hope this helps and good

> luck, > >Stacia and Hunter, 7, systemic > >---

In

> , MG9393@s... wrote: > > Hi Group, > > Well we

> had a Rhem. Appt. last week and it confirmed what we had >been thinking.

> The Voltaren alone is not working well enough. So >Tyler's Dr. put him

> on Methotrexate, which honestly scares me to >death. After reading all

> the side effects I was even more terrified. >He took the first dose

> Friday after dinner and a couple of hours >later was really dizzy and

> tired. Saturday he was quezzy and had >diarrhea. Then Sat. night he felt

> really sick at his stomach, but >never actually got sick. Are these the

> same side effect that your >children have experienced? Do they lessen as

> the treatment goes on >or do they remain the same every Sat.? The Dr.

> said he may have to >take it for a year? Is that what you guys have

> experienced? > > Sorry to ramble on, but I am very nervous about

> Methotrexate. >Thank goodness for a group like ya'll. The Dr. can tell

> you >everything and give you everything to read, but it really helps

> >talking to people who have been there first hand. I really >appreciate

> this group. > > > > Thanks for listening, > > > > Missy and Tyler

> (Spondy, 10)