Methotrexate

[Guest guest]

, to me it sounds like your doctor is using you as his guinea pig.

Let me tell you a story, here in town is an oncologist who is according

to his patients a firm believer in chemo and radiation treatment. Guess

what, one day I was in his house and found the kitchen countertop

covered with supplement bottles, at least 20 off them, each one off

these supplements were known to either cure cancer or help to prevent

the disease. This scene was very upsetting to me, who knows how many

people he killed through the chemo and radiation therapy he

prescribed!!! Please keep this in mind before your doctor push you again

into some kind of unorthodox treatment, do your home work please!

Good luck!

M.

[Guest guest]

Hi ,

Most likely at least a year.Some of these kids have been on it for several

years.My son started right before his 3rd b-day and will almost be off on his

3rd b-day coming up end of July.We have been tapering for 17months now.

It's realy hard to say what will happen. may not respond to MTX or have

side effects so they may try something else.She may be a great

responder,respond strong and quick and able to taper off quickly.It's all so

highly

individualized to each person.

MTX realy is a safe,effective drug.Side effects are monitored through routine

lab tests and if something is going on the rheumies can find it before any

symptoms appear.

Keep asking any questions you may have.

Hugs

Becki and 5 systemic

[Guest guest]

Hey . The length of time they can be on this drug varies so much. It is

a drug that these kids can be on for a long with very few side effects. In

the end it really depends on how well will tolerate the medication.

If she reacts well to the medication then she will probably stay on it until

she is symptom free and then they will start a slow taper. This process more

than likely will take a year plus. Caroline had been on Methotrexate since

March and her Rheumy told us she will be on it for a few years yet. Hope

this helps!

Alia and Caroline, age 2, poly and Uveitis

Methotrexate

My niece just started on methotrexate this weekend. I was wondering

if anyone could shed some light on the average length of time

children are usually kept on this medication? I know it will vary

depending on how well it is working and her symptoms.

Thank you all for your help. My sister (Tara) and I have been picking

all your brains since we are new to this diagnosis. We really

appreciate all you help and support.

(Aunt to , 2, poly & AS)

[Guest guest]

I agree with Alia, it is really hard to tell. My son has been on for

over 2 years, and will probably stay with it since it helps him. When we

tried to lower it last summer, it did not work. He actually ended up

with an increase this spring. But since your neice is young, the chances

for remission are possibly better. Eventually, when her symptoms ease

and they try to taper you will get a better idea of how long it may

take. Michele (17,pauci & spondy)

Methotrexate

My niece just started on methotrexate this weekend. I was wondering

if anyone could shed some light on the average length of time

children are usually kept on this medication? I know it will vary

depending on how well it is working and her symptoms.

Thank you all for your help. My sister (Tara) and I have been picking

all your brains since we are new to this diagnosis. We really

appreciate all you help and support.

(Aunt to , 2, poly & AS)

[Guest guest]

. One more thing. Keep in mind it takes about 6 weeks to see the

effectiveness of the Methtrexate. For us it was a little longer. It took

closer to 8 weeks before we started seeing a difference in Caroline

Alia and Caroline, age 2, poly and uveitis

Methotrexate

My niece just started on methotrexate this weekend. I was wondering

if anyone could shed some light on the average length of time

children are usually kept on this medication? I know it will vary

depending on how well it is working and her symptoms.

Thank you all for your help. My sister (Tara) and I have been picking

all your brains since we are new to this diagnosis. We really

appreciate all you help and support.

(Aunt to , 2, poly & AS)

[Guest guest]

Hi Alia,

I was so saddened to read that your little Caroline has been feeling so

sick. Has there been any improvement since the last time you posted? I

hope she's feeling better now.

Josh has taken MTX for nine years. Although he's never had that type of

a reaction to it, I'm sure there are others who have. He has sometimes

felt nauseous ... but has never vomited. He takes a lower dose, too. He

started at 7.5 mg and increased only up to 15 mgs. When he still wasn't

getting maximum expected benefit from it we switched to injections,

which actually helped cut down on many side effects for him.

Maybe the doctor was correct, in thinking that this was a stomache

virus? Has anyone else at home gotten sick? Maybe the rheumatologist is

right, in thinking that the dose is just too high for someone so small?

There are so many variables. I just hope that your little girl has begun

to feel better and that this doesn't happen again. Please let us know

how things are, okay?

Take Care,

Georgina

Pranke, Alia wrote:

> Caroline switched to injectable Methotrexate last week and she has had a

> slew of problems since. On Thursday (72 hours later) she had a 101 degree

> fever and was vomiting al over the place. Her doc seemed to think it was

> just the stomach flu. On Saturday after the third restless night we took her

> into urgent care and she had an ear infection. She was put on Omnicef. We

> thought she'd get some relief, but another two nights of restlessness. This

> morning she woke up with a 101 degree fever and started puking again! She's

> had a fever all day and we have taken her into her ped twice.

>

> Our ped spoke with her rheumy and they have advised not to give her the MTX

> this week . Her doc feels she shouldn't be in too much pain with out it -

> but I don't see how that is possible?? When I spoke with her rheumy she

> said that possibly Caroline isn't handling the injectable MTX well and that

> it is too high a dosage (20mg - she weighs 30 pounds), but she couldn't be

> certain until she sees the labs... Well -her labs came back normal so now

> they wants to run some more blood tests today (not sure which one's) and now

> we can't give her MTX next week either!! We are supposed to have her labs

> re-drawn next Wednesday when we get back and then see our Ped on Thursday.

>

> It just seems like a major roller coaster we are on! Caroline is miserable

> and I have no idea how to help her! Has this happened to anyone else???

>

> Alia and Caroline, age 2, poly and uveitis

[Guest guest]

My son, Carrick, age 12, onset 9, has taken 8ml of MTX for 2 years. It is a

weekly injection. It was reduced 3 months ago to 6ml. he does occasionally

get sick for no apparent reason (either nausea or actually vomiting). This

happens probably once a month on average. He gets headaches for no reason. He

lost some small patches of head hair once but regrew it. He got mouth sores for

a while until we mentioned it the doctor and he prescribed folic acid

tablets. We haven't had many instances of cold sores since then. He is always

tired

before other children at the same sporting activity. He plays hockey. We

pump him full of Gatorade before and during his games to keep up stamina. He

stopped growing for the first year after the onset of the illness. He had been

growing 1-3inches before that. He grew 3 inches this past 6 months. His

illness was preceded by an extremely mild case of parvo 19 virus. His sister

experienced a very severe case of parvo19 at the same time but no illness

ensued.

Dozens of other children that we know of experienced the parvo19 virus at

that same time without any apparent deleterious effect.

M. J. O'Connor

President

Rail Systems, Inc.

22 North Greenwood Ave.

Hopewell, NJ 08525

609-466-4114

[Guest guest]

Dear , n has had systemic for five years. Fatigue has been

somewhat of a problem the entire time. We have found rest to be important,

but she still does not have the stamina as her 13 year old sister. We have

told her that " if she plays, she has to pay " the next day. She has learned

this the hard way. It is not fair, but it helps her to regulate her

activities. Many times we have to step in when she won't pace herself.

(n, 15 , systemic)

Re: Methotrexate

> My son, Carrick, age 12, onset 9, has taken 8ml of MTX for 2 years. It is

a

> weekly injection. It was reduced 3 months ago to 6ml. he does

occasionally

> get sick for no apparent reason (either nausea or actually vomiting).

This

> happens probably once a month on average. He gets headaches for no

reason. He

> lost some small patches of head hair once but regrew it. He got mouth

sores for

> a while until we mentioned it the doctor and he prescribed folic acid

> tablets. We haven't had many instances of cold sores since then. He is

always tired

> before other children at the same sporting activity. He plays hockey. We

> pump him full of Gatorade before and during his games to keep up stamina.

He

> stopped growing for the first year after the onset of the illness. He had

been

> growing 1-3inches before that. He grew 3 inches this past 6 months. His

> illness was preceded by an extremely mild case of parvo 19 virus. His

sister

> experienced a very severe case of parvo19 at the same time but no illness

ensued.

> Dozens of other children that we know of experienced the parvo19 virus at

> that same time without any apparent deleterious effect.

>

>

>

> M. J. O'Connor

> President

> Rail Systems, Inc.

> 22 North Greenwood Ave.

> Hopewell, NJ 08525

> 609-466-4114

>

>

>

[Guest guest]

Welcome back Rae,

Sorry but I still take MTX orally but I'm sure someone will be able to help.

Good luck,

[Guest guest]

Is he taking folic acid? Most rheumy's prescribe 1mg folic acid

daily to help with the side effects of methotrexate. It is

important to let his rheumy know the side effects he is

experiencing. If he is on folic acid already, the rheumy may want

to increase the dose and see if that helps. If the side effects

continue, another option is injectible mtx. Another thought, did he

take it with food? I just looked and my mtx bottle does not say to,

but I seem to remember being told to take all my meds with food to

avoid stomach problems.

Jennie

> My husband has RA & just started taking Methotrexate (once weekly)

> three days ago. Now he has headaches, nausea & a slight fever.

Has

> anyone else out there had this reaction to this drug & if so, did

it

> go away after awhile?..........he's miserable. He's also just

> started a low dose of Prednisone, but from everything I'm reading,

> it's probably the Methotrexate that's causing the grief.

[Guest guest]

Now he has headaches, nausea & a slight fever. Has

> anyone else out there had this reaction to this drug & if so, did

it

> go away after awhile?

This is a normal reaction to MTX...most get it some milder then

others. If you don't you are lucky very lucky. Some have to get

the shot instead of taking the pill - it has less side effects. I

reacted this way - plus loss of hair and fingernails became very

soft...

The major affects went away for me and now only occasionally do I

have a reaction. It did take me about 3 months in the beginning

though but the swelling and aches receded some so I was willing to

stick it out.

Good luck to your husband.

Oh, one more thing...I take Foltx which is folic acid and the B

vitamins to compensate for the loss to my immune system from the

chemotherapy drug.

God bless,

Althea

[Guest guest]

Thanks for the info. Because he had taken the methorexate 3 days before, he's

convinced that it couldn't have caused his problems. I still think it could but

because it's the weekend he hasn't been able to talk to his Dr. And he isn't

taking Folic Acid, so that may be something to check into. I'm pretty sure he

took it with food though---although his eating habits are terrible & sometimes

he'll eat a donut in the morning & then nothing at all until 8 o'clock at

night--which probably doesn't help his situation either. So far though,

nothing's kicked in to ease the pain in his wrists & shoulders. We'll just keep

trying to get past this. Thanks again. Ginny,

Jennie G <xponder70@...> wrote:Is he taking folic acid? Most rheumy's

prescribe 1mg folic acid

daily to help with the side effects of methotrexate. It is

important to let his rheumy know the side effects he is

experiencing. If he is on folic acid already, the rheumy may want

to increase the dose and see if that helps. If the side effects

continue, another option is injectible mtx. Another thought, did he

take it with food? I just looked and my mtx bottle does not say to,

but I seem to remember being told to take all my meds with food to

avoid stomach problems.

Jennie

> My husband has RA & just started taking Methotrexate (once weekly)

> three days ago. Now he has headaches, nausea & a slight fever.

Has

> anyone else out there had this reaction to this drug & if so, did

it

> go away after awhile?..........he's miserable. He's also just

> started a low dose of Prednisone, but from everything I'm reading,

> it's probably the Methotrexate that's causing the grief.

[Guest guest]

And he isn't taking Folic Acid, so that may be something to check

into.

It's a MUST with MTX.

S.

[Guest guest]

I have found you need to drink plenty of water. The information

packet I received with my Methotrexate stated you need to keep

hydrated to help keep your body filtering the medications properly.

I would assume these side effects could be intensified if you were

dehydrated. Just something I noticed and thought might help.

> My husband has RA & just started taking Methotrexate (once weekly)

> three days ago. Now he has headaches, nausea & a slight fever.

Has

> anyone else out there had this reaction to this drug & if so, did

it

> go away after awhile?..........he's miserable. He's also just

> started a low dose of Prednisone, but from everything I'm reading,

> it's probably the Methotrexate that's causing the grief.

[Guest guest]

Do you guys notice a difference in side effects sometimes from week

to week, or once you get past any initial side effects, is it

generally OK? I've been taking methotrexate orally for about 5 months

now. Some weeks I'm fine...just a little fatigue the next day, but

no nausea. But every once in a while, I'll feel really lousy for

about two days after taking it, almost like I've got the flu or

something. I haven't been able to find any kind of pattern, like how

much water or food I've had. I always take it with food and I try to

drink plenty of water afterwards.

> > My husband has RA & just started taking Methotrexate (once

weekly)

> > three days ago. Now he has headaches, nausea & a slight fever.

> Has

> > anyone else out there had this reaction to this drug & if so, did

> it

> > go away after awhile?..........he's miserable. He's also just

> > started a low dose of Prednisone, but from everything I'm

reading,

> > it's probably the Methotrexate that's causing the grief.

[Guest guest]

Very good point, , and one often overlooked. It is important to

drink plenty of water no matter what meds you are taking. If you have

a serious water retention problem, such that your doctor feels you

need dieuretics, you still need water you just need to balance when

you drink it with how much you drink.....important to discuss with

the doctor prescribing the dieuretics.

Medication needs plenty of water to be absorbed properly in the

system. Water is also extremely important for your teeth when you

take a lot of meds. Your teeth are much more prone to decay if your

body has a shortage of water.

For the many who also have sjorns (sorry, I know I spelled that

wrong) water is especially important.

Bottom line..........drink water, water and more water. You'd be

surprised at how much water can help with much of the nausea

associated with some meds.

Elaine

> > My husband has RA & just started taking Methotrexate (once

weekly)

> > three days ago. Now he has headaches, nausea & a slight fever.

> Has

> > anyone else out there had this reaction to this drug & if so, did

> it

> > go away after awhile?..........he's miserable. He's also just

> > started a low dose of Prednisone, but from everything I'm

reading,

> > it's probably the Methotrexate that's causing the grief.

[Guest guest]

,

I haven't noticed this with mtx, but I have with my Humira.

Sometimes the side effects are different, and sometimes it seems to

work better than others. I also know that I have normal RA

fluctuations so that sometimes I feel more run down than others,

although I can usually relate it to stress or trying to do too much.

It's probably normal, but put it on a list and bring it up to your

rheumy at your next visit. It might warrant upping your folic acid

intake.

Jennie

> Do you guys notice a difference in side effects sometimes from

week

> to week, or once you get past any initial side effects, is it

> generally OK? I've been taking methotrexate orally for about 5

months

> now. Some weeks I'm fine...just a little fatigue the next day,

but

> no nausea. But every once in a while, I'll feel really lousy for

> about two days after taking it, almost like I've got the flu or

> something. I haven't been able to find any kind of pattern, like

how

> much water or food I've had. I always take it with food and I try

to

> drink plenty of water afterwards.

>

>

>

>

[Guest guest]

I've been experiencing dry mouth a lot lately, and wondered why it was still

there after drinking a glass of water. Apparently when I started injecting

MTX, I wasn't drinking more to make up for the stronger reaction. I just

started noticing my tongue hurts, also, and some inside my mouth. In the

last 2 months I've learned a lot, most f it from this board. Among the facts

I have learned is that my Rheumy wasn't doing enough to fix me, otherwise I

may have been able to go back to work!

Dennis

[ ] Re: Methotrexate

>I have found you need to drink plenty of water. The information

> packet I received with my Methotrexate stated you need to keep

> hydrated to help keep your body filtering the medications properly.

> I would assume these side effects could be intensified if you were

> dehydrated. Just something I noticed and thought might help.

>

>

[Guest guest]

Hey Dennis. I get dry mouth for a day or two after I take MTX. I'll

also have sore spots inside my mouth, like I'm developing a mouth

sore but it never really develops. I've only had one honest to

goodness mouth sore since I started it, and it was only there a day

or so. I do take folic acid, so maybe that's preventing me from

getting more actual sores in my mouth.

> I've been experiencing dry mouth a lot lately, and wondered why it

was still

> there after drinking a glass of water. Apparently when I started

injecting

> MTX, I wasn't drinking more to make up for the stronger reaction. I

just

> started noticing my tongue hurts, also, and some inside my mouth.

In the

> last 2 months I've learned a lot, most f it from this board. Among

the facts

> I have learned is that my Rheumy wasn't doing enough to fix me,

otherwise I

> may have been able to go back to work!

>

> Dennis

>

> [ ] Re: Methotrexate

>

>

> >I have found you need to drink plenty of water. The information

> > packet I received with my Methotrexate stated you need to keep

> > hydrated to help keep your body filtering the medications

properly.

> > I would assume these side effects could be intensified if you were

> > dehydrated. Just something I noticed and thought might help.

> >

> >

[Guest guest]

Hello, Your story just about breaks my heart. First of all, I've never

heard of them amputating toes from PA. Did he have an infection at the

time? Has the doctor told you which type of PA your son has? There are

several different types and some are much worse than others. I know someone

will list them all for you, or you can check out www.Arthritis-Symptom.com .

I think they explain things really well and may give you some insight into

the future for your son.

First of all, if you can't get the answers you want from your doctor, I

would look for a new doctor. That has to be one of the hardest things we

have to deal with. Most of us have changed rheumatologists over and over

until we find one we trust and can talk too. It seems really important in

your case since your son must be really an advanced case.

I have had my heart affected by PA, but only in a mild way. They think it

has caused me to developed a dystolic dysfunction which can lead to

congestive heart failure, but I'm 49 and your son is so much younger. My

lungs might have been affected as well, but only by being weakened from

having an autoimmune disease. I already have asthma, so I'm at risk for

other problems there as well.

Hopefully some one will respond having a child who has developed this at an

early age. I had the virus and a mild skin rash since I was about 11, but

the pain and arthritis didn't kick in until I fell about 6 years ago. it

has taken a long time for me to find the right medication, so I have a lot

of joint damage from waiting and it took forever to get the right diagnosis.

Since they have caught your son's early, lets hope that makes a big

difference.

I wish I had more answers for you. Just keep reading all the posts and I

know you'll be getting a lot of responses from people who want to help.

Take care and good luck. Love, Fran

[ ] methotrexate

Hey,I'm in Tasmania, Australia.My 14y.o.son has recently been

diagnosed.He's about to start methotrexate injections, once a week,

for 3 months. What are we expecting to happen? If his Rheumy has said

that he has a very aggressive form of PA (no skin problems,yet),will

it always be that way.He has had a toe amputated in May, now has both

big toes,3 other toes, a thumb and a 'hotspot'on his spine affected

and already eroded. Is it the usual practice to also have heart and

lung checks? Our Rheumy told us it can affect them.

I'd appreciate ANY advice or comments.

[Guest guest]

I'm taking 2 mg of Folic acid per day since I had to start injecting MTX.

The mouth sores seem to be building over time, so I need to track them since

I'm now relating them to the MTX. My tongue is so sore right now that it

hurts to talk. It's a good thing I'm a man of few words.

Dennis

[ ] Re: Methotrexate

> Hey Dennis. I get dry mouth for a day or two after I take MTX. I'll

> also have sore spots inside my mouth, like I'm developing a mouth

> sore but it never really develops. I've only had one honest to

> goodness mouth sore since I started it, and it was only there a day

> or so. I do take folic acid, so maybe that's preventing me from

> getting more actual sores in my mouth.

>

>

>

>

>> I've been experiencing dry mouth a lot lately, and wondered why it

> was still

>> there after drinking a glass of water. Apparently when I started

> injecting

>> MTX, I wasn't drinking more to make up for the stronger reaction. I

> just

>> started noticing my tongue hurts, also, and some inside my mouth.

> In the

>> last 2 months I've learned a lot, most f it from this board. Among

> the facts

>> I have learned is that my Rheumy wasn't doing enough to fix me,

> otherwise I

>> may have been able to go back to work!

>>

>> Dennis

[Guest guest]

Hi Alia,

I first heard of this a few months ago mayby longer.Our pharmacy hadn't heard

of this but they had enough on hand to get through the last of the

taper.Over the years I have had MTX made by a few differant companies the latest

and longest being Zanodyne.

The only advice I can offer is for your rheumy to prescribe 4 vials of MTX

preservative free to cover the month.Before our drug company switched to Express

Scripts I still had the same co-pay if it was 1 vial a month or 4.

Good luck finding the preservative free,s had both types and he prefered

with preservative and you had the luxury of multiple doses.

Hugs

Becki and 6 systemic

[Guest guest]

-Alia,,

Last month Walgreens couldnt find any of the MTX with preserative

for us either and ordered in 4 vials of the single use stuff but

VERY kindly only charged me what I pay for the one vial of multi use

stuff as they know I was paying out of pocket for it. I thought that

was very kind of them.

Since the methotrexate is now covered under our " major medical " and

we dont pay anything for it. I have to send the RX to the drug

company that has our account and they ship it to me. Just last week

i received a 10ml vial for multi dose use which should last me a few

months, it comes from Zanodyne. They are based in KY, perhaps you

can get in touch with them and see if its available anywhere here??

How Miss C doing with her MTX and enbrel injections??? hows she

doing with the decrease in meds???

Hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Hi Alia,

> I first heard of this a few months ago mayby longer.Our pharmacy

hadn't heard

> of this but they had enough on hand to get through the last

of the

> taper.Over the years I have had MTX made by a few differant

companies the latest

> and longest being Zanodyne.

> The only advice I can offer is for your rheumy to prescribe 4

vials of MTX

> preservative free to cover the month.Before our drug company

switched to Express

> Scripts I still had the same co-pay if it was 1 vial a month or 4.

> Good luck finding the preservative free,s had both types and

he prefered

> with preservative and you had the luxury of multiple doses.

> Hugs

> Becki and 6 systemic

>

>

>

[Guest guest]

On 14 Sep 2004 at 14:11, shelly richards wrote:

> i am from AKron, Ohio and they too have a shortage on methotrexate.

,

We're from Stark Co. & I'm looking for a dr. for a second opinion with dd.

Who does Ciarra see?

Thanks,

Ruth -(dd still needs a definite diagnosis)

[Guest guest]

Wow Helen. That is awesome! I may be heading up your way if I can't find any

here in the cities! We were lucky and the hospital has a little left. They

were able to give us enough for her next 5 shots. They even put them in

pre-filled syringes. Very handy!

The shots are coming along. Right now we have a friend of ours who is a

nurse giving them. Alan watches her baby every afternoon for them so when

she picks her up on Wednesday's and Friday's she just gives Caroline her

shots. She still cries and throws a fit, but I believe that one day it will

get better!!! She isn't handling the Prednisone taper that great, but we

added Ibuprofen after her last visit and I can tell its making a

difference...

Take care...

Alia and Caroline, age 2, poly and uveitis

Re: Methotrexate

-Alia,,

Last month Walgreens couldnt find any of the MTX with preserative

for us either and ordered in 4 vials of the single use stuff but

VERY kindly only charged me what I pay for the one vial of multi use

stuff as they know I was paying out of pocket for it. I thought that

was very kind of them.

Since the methotrexate is now covered under our " major medical " and

we dont pay anything for it. I have to send the RX to the drug

company that has our account and they ship it to me. Just last week

i received a 10ml vial for multi dose use which should last me a few

months, it comes from Zanodyne. They are based in KY, perhaps you

can get in touch with them and see if its available anywhere here??

How Miss C doing with her MTX and enbrel injections??? hows she

doing with the decrease in meds???

Hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Hi Alia,

> I first heard of this a few months ago mayby longer.Our pharmacy

hadn't heard

> of this but they had enough on hand to get through the last

of the

> taper.Over the years I have had MTX made by a few differant

companies the latest

> and longest being Zanodyne.

> The only advice I can offer is for your rheumy to prescribe 4

vials of MTX

> preservative free to cover the month.Before our drug company

switched to Express

> Scripts I still had the same co-pay if it was 1 vial a month or 4.

> Good luck finding the preservative free,s had both types and

he prefered

> with preservative and you had the luxury of multiple doses.

> Hugs

> Becki and 6 systemic

>

>

>