Re: Methotrexate Questions

[Guest guest]

Dear Tina, I have been on Methotrexate for 13 years now and the same side

effects continue for me. I take it at night (15mg) the next 24 hours consist

of more severe fatigue, and nausea, make sure he eats with this drug, it

really helps. Perhaps give Stevphen his dose on Fri, or Sat so the worst of

the fatigue is over the weekend where he can relax in stead of attend school.

Remember this is a chemo therapy drug, so the fatigue and nausea goes with

it. I have had no severe side effects in 13 years, my liver is still fine

(yea). The only other small thing is a bit of hair loss, but nothing to worry

about. Hope this helps. Carolyn

[Guest guest]

Tina,

I don't think that you are being paranoid. Carolyn said it very well. We have learned through trial and error that the injections work much better than the pills (I'm not sure which will be using) and I would recommend you use the MTX on the weekend.

Yes, this is an immune suppressant drug and he will be prone to infections. Our doctor from the beginning told us just to stay away from large crowd of people or people that we know is sick.

Being that my daughter gets the MTX on Friday night, we pretty much have to stay home on the weekend and at times she is unable to attend school on Monday due to the side effect of the medication lingering on a little longer. The biggest problem that we have is her fatigue. She generally just doesn't feel well.

Though I'm not crazy about the MTX, I have learned that it has really helped with the disease.

Good luck and I wish the best for .

[Guest guest]

Tina-

You're not being paranoid. My daughter, whose 2, started on MTX in December, and I was very concerned about it like you are. It seems like such a major nasty drug to put such a small child on. However, we've had virtually no problem with it to date. I think she had one lone mouth sore. Her skin does seem to be extra sensitive. I don't know if it's related, but since she started taking it, her face is so dry and she gets red, almost like windburn. I give it to her on Friday nights so she has the weekend to relax. She doesn't seem to feel sick from it, but maybe a bit more tired than normal. We increased the dosage on Friday and she slept most of the weekend. Her arthritis is drastically improved though. I don't think you need to take time off from work. I personally don't think it's necessary to keep your child away from other kids. goes to daycare. She has been sick a few times, but nothing extreme. I can't say for sure she wouldn't have been sick as much without being on the MTX. It is a scary drug, but most kids do very well, and with regular blood testing, they should be able to catch any problem early. Good luck.

Diane (, 2, pauci)

[Guest guest]

Hi Tina

The most serious side effects that you've read about generally are not seen

in our kids because their doses of methotrexate are quite small compared to

what is taken to treat cancer. That said, some kids do get sick-- my

daughter was one of them, so we switched to injections. Serious drops in

white cell counts are rarely seen, yet a lot of our kids do seem more

inclined to catch whatever is going around. However, their immune systems

are not so compromised that school and day care are problems. Chicken pox

are a concern while on methotrexate. If has not had them, be sure

you speak to his rheumatologist now about what to do if he is exposed.

Remember that all the literature that is put out has to include all possible

side effects, not just the things that are likely to occur at low doses. It

makes it really frightening to use a med!

My daughter has been on methotrexate for over 7 years now. While she has had

some side effects, it has been worth it all to have her on this drug. Rather

than being unable to participate in life, she rarely looks like there's

anything wrong with her. For it has been a miracle drug.

I hope this helps you a bit.

Liz

Methotrexate questions

> Hi to all:

>

> I am worried about the side effects of the MTX, so i was hoping

> maybe this group could shed some light for me. I have read all the

> possible side effects, and i want to know do these usually happen? Is

> he going to be sick?? I know it decreases the white blood cell count

> which will make him more suseptible to infection, should i worry

> about sending him to school?? My other question is my husband and I

> both work full time, and spends a few hours with a babysitter

> (who is a good friend) but, would any of you recommend I take a leave

> of absence from work to care for him until he adjusts to this med???

> Or am i just totally being paranoid?????? LOLOLOL Any input would be

> appreciated. Thanks in advance!

>

> Tina (7yr old , severe poly, A.S.)

>

>

>

>

>

>

[Guest guest]

Hi,Tina. My son started MTX in Dec and it has worked well for him. He has

had some mouth sores so everyday he rinses his mouth with mouthwash when he

brushes. That has kept them away. He also takes his on Friday before bed and

he has not had any problem with fatigue and nausea. He has gotten sick twice

this winter with two different types of flu that were going around, but I

always figured with his immune system out of whack from the arthritis that

is not so unusual. This drug has been wonderful for controlling his

arthritis. Hope this helps calm your nerves a little, Michele

Methotrexate questions

Hi to all:

I am worried about the side effects of the MTX, so i was hoping

maybe this group could shed some light for me. I have read all the

possible side effects, and i want to know do these usually happen? Is

he going to be sick?? I know it decreases the white blood cell count

which will make him more suseptible to infection, should i worry

about sending him to school?? My other question is my husband and I

both work full time, and spends a few hours with a babysitter

(who is a good friend) but, would any of you recommend I take a leave

of absence from work to care for him until he adjusts to this med???

Or am i just totally being paranoid?????? LOLOLOL Any input would be

appreciated. Thanks in advance!

Tina (7yr old , severe poly, A.S.)

[Guest guest]

Tina..i know meds affect every child and adult different. But Tabitha has

been on mtx..since the age of 5..she is now 17. The only problem she has

ever had was with the injections..which she had chills really bad..so we

just went back to pills..some say shots are better..i think the pills are

fine. We just put the pill in a bite of pudding.something she would just

swallow(it is a small pill). Until she was able to swallow pills on her own.

Tabitha has never had any mouth sores or any other side effect that i have

read that the other children have had. She takes the mtx. at night..before

bed..sometimes she eats..sometimes she doesn't..She also takes it the same

day every week. She has never suffered any fatigue or nausea with it..at one

time her stomach bothered her but we gave her zantac..and it was okay..but

here it wasn't related to the mtx. I didn't keep Tabitha from other

children..I don't think quitting your job would help..if you feel

uncomfortable just give it to ..say on Saturday. Let keep

going to school and keeping his life as normal as it has been..But this

would be yours and your husbands decision. At the time I found out Tabitha

had this nasty disease..i did leave my job..because she was in and out the

hospital plus a rehab..for a month..I was a single parent at the time..plus

i had a son, who was a year younger than her. But once everything

straightened out..i went back to work.

Just take a deep breath..and take it one day at a time..you and your husband

will do okay..Believe it or not..you will see a side to that you

never knew of..Tabitha even when she was little..had this amazing courage,

strength, and determination..these kids who deal with arthur(jra)are very

caring, compassionate, and determined children..

Sorry to ramble..but..i remember feeling scared as you are..and I wish I had

someone at the time..like people on this list..

Tina..call your local arthrtis foundation..who knows maybe there is a

support group or someone in that area who is also dealing with jra..you

would be surprised at the ones who are out there.

take care and good luck

karen(tab17..poly)

From: " jramom2002 " <jramom2002@...>

Reply-

Subject: Methotrexate questions

Date: Wed, 27 Mar 2002 06:29:13 -0000

Hi to all:

I am worried about the side effects of the MTX, so i was hoping

maybe this group could shed some light for me. I have read all the

possible side effects, and i want to know do these usually happen? Is

he going to be sick?? I know it decreases the white blood cell count

which will make him more suseptible to infection, should i worry

about sending him to school?? My other question is my husband and I

both work full time, and spends a few hours with a babysitter

(who is a good friend) but, would any of you recommend I take a leave

of absence from work to care for him until he adjusts to this med???

Or am i just totally being paranoid?????? LOLOLOL Any input would be

appreciated. Thanks in advance!

Tina (7yr old , severe poly, A.S.)

_________________________________________________________________

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[Guest guest]

Tina,

My daughter Abbie (12, systemic) has been on mtx since diagnosis in Jan. 2000. She has increased from a very small amount (I don't remember exactly.) to 30 mg sub q per week. The only side effect she has ever had is nausea with the oral dose. As the dose got higher (25 mg oral) she got increasingly sicker until she ended up taking it in bed so she could sleep through the nausea. She has been on an injection since Dec. 2000, and says she has a metallic taste in her mouth with it. So, she has a drink of juice at the ready on Thursday night. We have regular blood work that has always come back normal. Personally, I feel it is one of the safest meds she is on. Currently that is prednisone, planquenel, mtx, celebrex, folic acid, and remicade. The folic acid is supposed to help with the liver issue as I understand it. I know that some kids skip the folic acid the day they take their mtx, but we never have.

The first months after diagnosis I think are the most difficult to adjust to. Abbie missed so much school, and my husband and I basically stayed home with her. But as soon as she was up and around again, we were out the door as well. For her well being, we made as swift and painless an adjustment as possible. She lost so many things, (innocence and soccer come to mind) that we felt it helped to be as normal as possible. As for daycare, we didn't have that issue, but school is probably no different, and every change in s life is one more reminder that he is now different (needs special attention). Abbie hates any reminders that she has limitations that other kids don't have. If we put up a flag, she goes at it full tilt until she is passed it. So with her, the least said the better. (I need to take my own advice.) Sorry to ramble.

Good luck Tina. You will figure out what is right for and the rest of your family, and things will settle down to a new state of normal.

Christy (Abbie, 12, systemic)

[Guest guest]

Hi Tina,

No, I wouldn't say you're acting paranoid : ) Just feeling concerned. I remember how worried I was when the doctors wanted my son to begin MTX. I knew nothing at all about it but after reading the patient pamphlet ... yikes! I was very wary. I wish I had a group of people whose children were using it, who could have helped to quell some of my worries.

My son has been able to tolerate it very well. I think, aside from prednisone, it's been the most effective med for his inflammation and the one that's helped the most to preserve his joint function, despite aggressive JRA. He's been taking it for nearly 7 years. He took the pills for the first 5 years. Started at 7.5mgs and gradually increased it to 15mgs. He wasn't absorbing enough of a therapeutic dose though, so we switched over to a weekly injection. That's when, finally, he had great improvements. He had been a very sickly child, with lots of flare activity (that was the norm. There always seemed to be active arthritis). After a year or so of having it by injection we went to one week a shot, next week pills. Josh didn't like a weekly injection so the doctor said we could compromise, as long as things were still looking good. I was so worried that he might slip back again to much more active arthritis symptoms but that didn't happen.

We changed the time of dose to right before bedtime, so he wouldn't be bothered so much by any queasiness. We changed it to Friday nights, so he could sleep in the next morning if he needed to. He's more tired afterwards. It makes him feel a little weird, in a way that he cannot describe very well. A sort of dizzy feeling sometimes. Not that he would fall down if he was standing but

he just feels a little bit 'off'. Some weeks it worse than others but I haven't been able to figure out a pattern of why this happens. He also seems to produce more saliva after taking his MTX. I've not heard anyone else mention this as a side effect, so I'm not sure where this comes from. Strange. In the beginning, Josh used to get not mouth sores but extremely chapped, blistered lips. And thrush infections, in his mouth. I don't know if it's related to the MTX but he did start to take a daily folic acid supplement and after that, it was no longer a problem.

Good Luck, Tina. I do hope that it works as well for as it does for my son : )

Aloha,

Georgina

I am worried about the side effects of the MTX, so i was hoping maybe this group could shed some light for me. I have read all the possible side effects, and i want to know do these usually happen? Is he going to be sick?? I know it decreases the white blood cell count which will make him more suseptible to infection, should i worry about sending him to school?? My other question is my husband and I both work full time, and spends a few hours with a babysitter (who is a good friend) but, would any of you recommend I take a leave of absence from work to care for him until he adjusts to this med??? Or am i just totally being paranoid?????? LOLOLOL Any input would be appreciated. Thanks in advance!Tina (7yr old , severe poly, A.S.)

[Guest guest]

Missy,

hello.. my daughter who is 9 now was put on mtx 1 1/2 years ago it scared me to death too after reading the side effects but i have to admit it has given my daughter her childhood back.. she is still currently taking it in the begining she was kinda cranky so i started giving it to her at bed time or about 7-8 pm and she slept threw the night and the next day she is still a bit groggy but she knows it is makeing her better.. hope this helps some.. kellie & jessica 9yr poly jra

>From: MG9393@... >Reply- > >Subject: Methotrexate Questions >Date: Tue, 24 Feb 2004 19:36:40 -0600 > >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) > Click, drag and drop. My MSN is the simple way to design your homepage.

[Guest guest]

Missy

My son had the same kinds of reactions for his first two doses of MTX. The 1st dose caused upset tummy, although he didnt actually throw up. The 2nd week gave him diarrhea but since then weeks 3 and 4 were just fine.

Nick has only been on the MTX for 4 weeks so we are still new to it, so I cant tell you more than that, but i did want to share that it does get better, or at least it did for my son.

Good Luck

Hugs Helen, mom to (6,systemic)

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

DD (4)>From: MG9393@... >Reply- > >Subject: Methotrexate Questions >Date: Tue, 24 Feb 2004 19:36:40 -0600 > >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) > Watch high-quality video with fast playback at MSN Video. Free!

[Guest guest]

Missy,

My daughter took methotrexate for over 8

years and it was wonderful for her. We did finally reach a point where she

needed more than her body could handle so we then added enbrel which allowed us

to wean her off the methotrexate. While on methotrexate did sometimes

deal with nausea, mouth sores and elevated liver enzymes, but folic acid

supplements (first daily folic acid and eventually leucovorin) helped with

those. Even after so many years on methotrexate has no damage of any kind

from it and I would not hesitate to use it again if needed.

I hope this will be the answer for Tyler.

Liz

Methotrexate

Questions

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 Missy,

Reading about the side effects of MTX is pretty scarey.Most kids do just fine though.The tummy effects you mentioned are quite common for the first couple of doses.They prescribe 1mg folic acid a day to counteract these effects.If the trouble continues alot of kids do better on MTX injections.I hope Tyler doesn't get so sick after the next dose.Keep us posted.

Hugs

Becki and 5 systemic

[Guest guest]

Missy;

My son, Carrick, onset age 9, now 11 has been treated with MTX since he was diagnosed with JRA (poly). We were told he would take it for 9 months to 2 years. 2 years is coming up this summer. I understand from other parents that you then taper down with every other week after that. I don't know how long. He receives 8 ml injections 1x/week. Our doctor said that injections are more effective than oral pills and cause less stomach upset. The needles and injections were daunting at first but you get over it when you remember why you do it. He does get headaches occasionally. He was taking naproxen, that we are off of now. That made him nauseous occasionally. He has definite delay in healing for any illness or injury -- even a scratch from the MTX. He tires easily. Keeping this in mind we are watchful and compensate. He takes a lot of Gatorade before sports activities to keep up his energy.

Stay in there! It works.

M. J. O'ConnorPresidentRail Systems, Inc.22 North Greenwood Ave.Hopewell, NJ 08525609-466-4114

[Guest guest]

HI Missy:

My daughter Caitlin has been on MTX for about 6 weeks now. She, fortunately,

has not had any problems with it. She had a bit of diarrhea and vomited once

this past weekend, but I think she had a 'bug' as a few of us had it too.

When she went on MTX and I read and heard about the risks, etc. it scared me

too, but I thought it might be the med that works for her, so we went for it.

It still worries me, but so far (knock, knock, knock) so good.

I hope the next dose goes better for Tyler.

Take care.

Patty

[Guest guest]

Aubrey is on week Three of MTX and has done very well, I hope we can stay with the pills because she already is doing allergy injections........And the side effect sheet is quite scary....Terri

Re: Methotrexate Questions

Hi Missy, Reading about the side effects of MTX is pretty scarey.Most kids do just fine though.The tummy effects you mentioned are quite common for the first couple of doses.They prescribe 1mg folic acid a day to counteract these effects.If the trouble continues alot of kids do better on MTX injections.I hope Tyler doesn't get so sick after the next dose.Keep us posted. Hugs Becki and 5 systemic

[Guest guest]

Hi, Missy. has been on MTX since Dec 2001 (I can't believe it - 2

years already!) and it has helped him quite a bit. He takes it orally on

Fridays right before going to bed. His worst side effect has been mouth

sores which he controls by rinsing with Listerine every day and taking

his folic acid. His blood work is always fine. We did try to taper, but

he flared up quite a bit and is still on 10 mgs a week. In these past

few days he has begun complaining of his hands hurting which is a new

symptom for him. But his ankles, tendons, and toes are doing fine right

now. His back is ok, occasionally has some discomfort, but his recent

back xray shows it is in good shape. The MTX has been the best working

drug for him. Perhaps if your son took it later after dinner he might

not have the stomach problems as much? Just a thought. Good luck,

Michele (16, pauci & spondy)

Methotrexate Questions

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]

I agree. The side effect sheet is scary. Our Rheumy told us not to read it,

because it was geared towards cancer patients. She told us that in this small

dosage that we shouldn't have to worry about most of the side effects.

Alia and Caroline, age 2, pauci and uveitis

[Guest guest]

When my son began mtx, he did great, no side affects whatsoever....however,

as time went on, gradually, he began having nausea problems while trying to

drink the mtx in his juice, it got to where he could no longer drink juice

because it made him think about the mtx and feel sick. Eventually, the dr

switched to injections because we raised the mtx dose. Again, at the first

month on the injections was fine for Bronson, then eventually, he began

getting sick to his stomach right before and right after the injection, and

soon began throwing up right after the injection, but then would be fine.

Until 3 weeks ago, when he continued to throw up every day, twice a day for

a week after the injection, and at that point, his doctor said he was having

a reaction to the mtx being built up in his system, and we had to stop it

completely. That was our experience with mtx, from what I have read and

learned, it is fairly common to have stomach issues the day of and possibly

the day after the day the mtx is given, and there are perscriptions that can

help with that, my son's experience I think is fairly uncommon. I really was

upset that he has reacted to the mtx this way, because I feel that the mtx

really helped his jra symptoms. I hope things get better for your child.

Jodi

>From: MG9393@...

>Reply-

>

>Subject: Methotrexate Questions

>Date: Tue, 24 Feb 2004 19:36:40 -0600

>

>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]

My doctor said that kids who are on Methotrexate have more side effects depending on how quickly they absorb it (in ref to pills not injections) I didnt absorb it quickly so i got horrible side effects.. They would naturally switch you over to injct.. but they decided just to take me off and put me on Enbrel

(poly JRA and Spondy, 19)

[Guest guest]

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]

Hi Sara,

I am very new here, but my daughter had her first methotrexate shot

this past Friday. We were given a topical ointment to use before the

shot and did not feel ANYTHING! It was such a relief. Did

you get a Rx for a topical? Also, our primary physician did the

first one in her office to teach us, she will be assisting us with

her second so we will feel completely comfortable doing it on her

own. On a side note, a few years back we had to give our oldest

daughter injections of heprin in her belly....I figure if we could do

that, we can do this! It will become second nature (believe it or

not).

Peace,

Anne

>

> Hello to all,

> My name is Sara. This is my first post although I have been

> recieving support and encouragment through your e-mails for quite

> some time now. My son,

> Danny who is now 9 was diagnosed with JIA (pauci) in kindergarten

> when he was 6 years old. He has been through alot for his young age

> as I have seen that your precious loved ones have to. Danny's

> arthritis has mainly affected his lower joints: the knees, ankles,

> hips. He has had his knees drained over and over again, as well as,

> the steroid shots, and the daily medicine (pill form). His first

> couple steroid shots left him in remission for over a 1yr. at a

> time. But he just had them done again in December and within 8

weeks

> the pain and swelling was back. I don't understand how they were so

> effective and now aren't. Needless to say his rheumatologist has

made

> the suggestion of starting Dan-Dan ( my nickname for him, he would

> prob. be mad that I devulged that.Hee hee on Methotrexate shots

> and it

> scared me. I was wondering if anyone has had first had experiences

> with this drug ( particularly the shot part) and can tell me a

little

> bit about it. I have done my research online but wanted to hear

about

> it from someone who has taken it. Any advice would be greatly

> appreciated.

>

>

> Sincerely,

> Sara

>

[Guest guest]

Hi,

Kaylee was 2 when she was dxd with Pauci JIA, She now is classified as Poly.

She started MTX injections when she was 4 and has done well with them; other

than hating to get shots. The side effects for her have been minimal. She also

was on Enbrel injections twice weekly, but recently was switched to Humira as

she has Uveitis and they are hoping Humira will help with that as that has

been a constant battle the past couple of years.

The MTX did okay for Kaylee, but was not enough alone so that's when the

rheumy added the Enbrel. The Enbrel was a miracle for Kaylee as it made a great

difference in her joints and swelling. I am hoping with the change to Humira it

will be as effective and help with the Uveitis as well.

She still gets the MTX weekly and the Humira bi-monthly, which is good

because now we are down to 6 shots a months instead of 12.

Hope the MTX works well and makes a difference.

and Kaylee, 6, Poly, Uveitis, Osteopenia and DBD

**************

Need a

job? Find an employment agency near you.

(http://yellowpages.aol.com/search?query=employment_agencies & amp;ncid=emlcntusye\

lp00000003)

[Guest guest]

Sara,

My daughter was taking the methotrexate shots for about a year and a

half. It worked pretty good. The shots were not too painful, but you

could always get some emla cream to put on the injection site so it

doesn't hurt. I would definitely give the shots a try. I know how

scared you probably are to try the shots, but the benefits outweigh

the disadvantages. Good luck to you.

>

> Hello to all,

> My name is Sara. This is my first post although I have been

> recieving support and encouragment through your e-mails for quite

> some time now. My son,

> Danny who is now 9 was diagnosed with JIA (pauci) in kindergarten

> when he was 6 years old. He has been through alot for his young age

> as I have seen that your precious loved ones have to. Danny's

> arthritis has mainly affected his lower joints: the knees, ankles,

> hips. He has had his knees drained over and over again, as well as,

> the steroid shots, and the daily medicine (pill form). His first

> couple steroid shots left him in remission for over a 1yr. at a

> time. But he just had them done again in December and within 8

weeks

> the pain and swelling was back. I don't understand how they were so

> effective and now aren't. Needless to say his rheumatologist has

made

> the suggestion of starting Dan-Dan ( my nickname for him, he would

> prob. be mad that I devulged that.Hee hee on Methotrexate shots

> and it

> scared me. I was wondering if anyone has had first had experiences

> with this drug ( particularly the shot part) and can tell me a

little

> bit about it. I have done my research online but wanted to hear

about

> it from someone who has taken it. Any advice would be greatly

> appreciated.

>

>

> Sincerely,

> Sara

>

[Guest guest]

was on mtx for a couple of years. He first took it orally,

then switched to injections. It did help some, but he was taken off it

last year due to high liver enzymes in his routine bloodwork. He never

showed any side effects. The liver problems can be blamed on any of

the meds he was taking. Many kids do go to school on meds that

compromise the immune system. is currently home schooled for

that and other reasons. We are working on returning him to public

school, with an emphasis on hand washing and having notes sent home if

a teacher or student he is in contact with has an infectious disease.

(Along the lines of " your child may have been exposed to ____ " .)

Misty & (10, systemic)

[Guest guest]

Sara,

My has been taking MTX for over 7 yrs.It was basically a 3rd b-day present

from his ped rheumy. He started taking the injectable in juice but will no real

luck , 4 months later I asked to switch to shots,thanks to this knowledgeable

list. Due to the drug already being in his system we seen astonishing results

which gave us our first glimmer of hope. Even being maxed out on 25mg at age 4

it still wasn't enough but life sure was better. We maxed him out on Plaquenil

to start out on and that helped get his steroid doses below 9mg for the first

time.I guess he dropped the systemic part but he isn't poly either, he is and

always will be systemic onset.We had to drain and inject an ankle 2x within 6-8

weeks then started Enbrel also at age 4. WOW that was his miracle drug and put

him in a medicated remission.We did learn however that he needed MTX and Enbrel

to completely control his Arthur. is now in his second medicated remission

and come April

they will start the dreaded MTX taper again.

     Now to what you really want to know. After all these years he has NEVER had

the first side effect to MTX shots. One of his liver enzyme tests came back 1

point high but have come back 1 point low twice,text book meaning

malnourished,Ha! In between the 2 remissions he was put on the pills and

symptoms were still well controlled but he was taking 17.5mg or 7 pills.One day

out of the blue and the day before the long 307 mile drive to Cincinnati he

announced the pills hurt his stomach and sometimes he threw the pills up, not

good. He ASKED to be put back on shots and this was from a child that hated MTX

shots when he was little due to it being yellow. Some kids here DO NOT like the

yellow color. Being a shot and 100% absorbed he takes 12.5mg and over the years

they keep his doses the same instead of adjusting for weight.For example he

takes 1.3ml of Enbrel, if newly diagnosed based on kilos and started today  he

would take 1.7ml that is a 10mg

difference.

        At 10 1/2 does still use Emla cream to numb the area and it works.

He will definitely let me know if I miss,loll Also our pediatricians office gave

the shots for free,I brought the MTX vial in naturally but I practiced giving a

couple of oranges shot after shot before I was ready to do it myself,those poor

oranges were ready to explode.

       When I first read about MTX when was almost 3 it scared me to

death,within a year I double dog dared them to try and take it away. Every child

is different,most tolerate it very well but then you do have the small handful

that just can't. It is definitely worth a try.Shots are the best way and it is

the standard first line of treatment.

  I hope it works great but try and remember it IS a slow acting drug.It takes

several weeks to start working and then when it does it can take 2-3 months for

maximum benefit on that dose.Patience is a virtue but it is learned not

acquired.

 Hugs,

        Becki and 10 systemic onset

________________________________

From: favinbball26 <favinbball26@...>

Sent: Monday, February 16, 2009 12:38:27 AM

Subject: Methotrexate questions

Hello to all,

My name is Sara. This is my first post although I have been

recieving support and encouragment through your e-mails for quite

some time now. My son,

Danny who is now 9 was diagnosed with JIA (pauci) in kindergarten

when he was 6 years old. He has been through alot for his young age

as I have seen that your precious loved ones have to. Danny's

arthritis has mainly affected his lower joints: the knees, ankles,

hips. He has had his knees drained over and over again, as well as,

the steroid shots, and the daily medicine (pill form). His first

couple steroid shots left him in remission for over a 1yr. at a

time. But he just had them done again in December and within 8 weeks

the pain and swelling was back. I don't understand how they were so

effective and now aren't. Needless to say his rheumatologist has made

the suggestion of starting Dan-Dan ( my nickname for him, he would

prob. be mad that I devulged that.Hee hee on Methotrexate shots

and it

scared me. I was wondering if anyone has had first had experiences

with this drug ( particularly the shot part) and can tell me a little

bit about it. I have done my research online but wanted to hear about

it from someone who has taken it. Any advice would be greatly

appreciated.

Sincerely,

Sara