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It worked for me Mark. Every time I went to my rheumy the nodules I had on

my knuckles would be smaller and then eventually they disappeared. They

haven't come back since I quit taking it either tho and my rheumy was

surprised. He did mention cancer patients took much higher doses than we

do for RA.

Bev

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Re: Re:rheumatic Methotrexate

>From: MHOLMES@... (HOLMES, MARK T.)

>

>Yep, then you should hope you never have cancer, as the dosages are in the

>GRAMS, not milligrams. We truly are getting very small dosages of

>methotrexate at 10mg or 15mg or even 25 mg. That's not to say it is a drug

>to take likely even at these dosages, but the side effects are generally

>minimal, certainly so when compared to what a cancer patient has to endure.

>Now with that statement, my hair will probably start falling out and I'll

>develop lung toxicity. God forbid. So far, so good - no side effects after

>about 3 months.

>

>Mark

Hi Mark - I also had no (known) side-effects from 6 months of methotrexate; it

just stopped working for me about 4 months into it - but I stuck with it hoping

it would improve. But, no side-effects I could tell, or that showed up on the

blood work, done every 3 weeks!

>http://Mark_Holmes.tripod.com

>RA 4/98 AP 7/98

>Minocycline (Lederle generic) 100mg 2x/day MWF;Methotrexate (10mg/once

>weekly); folic acid (1 mg/day); Lodine 400mg 3x/day;Zone Diet;;Fish Oil(9

>caps/day);acidopholus;Milk Thistle;MSM (2G/day);Calcium;Multi-Vit

>ICQ 18123139

>AOL IM - ATHiker95

>

>

> Re:rheumatic Methotrexate

>>

>>

>> > From: " R r " <amble151@...>

>> >

>> > Methotrexate is still used to treat leukemia (sp) at about 100 times the

>> > doseage level as RA treatments.

>>

>>

>

>---------------------------

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> pain ... i am a little worried that some people on this list are

> mistaking a benefit from the AP when in reality, it is the steriod or

> the exercise, or an herb, or something else.

I thought the tetracycline was doing little for me, because my progress has

stalled and I had a flare-up in several joints a few months ago. When I

stopped it a week or so ago, in preparation for getting mycoplasma tests, I

have now found that after only a few days, the brain fog, sweating, low

fevers, disturbed sleep and fatigue returned with a vengance. In worrying

about my joints, I was overlooking the benefits I had in other areas. I am

sure it is from the tetracycline, because my condition deteriorated so much

in a few days that it was interfering with my ability ot do my part-time

job, and I had to start back on the tetracycline yesterday to cope with

that, and am looking hard at whether it is worth getting the tests if I have

to stay off the antibiotics four weeks to get accurate results. After just

one day back on it, I am better able to function again.

I'm sorry the AP didn't produce the benefits you were hoping for mimianne,

and glad that you have found something to help you for now, and that you are

also staying on the list. I would also urge you to think about trying

another antibiotic, as perhaps you have some resistant species. Some people

do both therapies. Have you been tested for mycoplasmal infections? Hang in

there, and I hope you continue to feel better! Liz G

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Liz,

Like you, I have contemplated getting off of mino for a month to do

Nicolson's tests. May do it yet - gotta find a doctor who will agree to draw

the blood though - don't have that pinned down yet. Will be interesting if

I go ahead to see if I get the same reaction as you. I know when I have

dropped my Nsaids that the pain has come back to some degree .

Mark

Re: rheumatic methotrexate

> From: " Liz G. " <pioneer@...>

>

>

> > pain ... i am a little worried that some people on this list are

> > mistaking a benefit from the AP when in reality, it is the steriod or

> > the exercise, or an herb, or something else.

>

> I thought the tetracycline was doing little for me, because my progress

has

> stalled and I had a flare-up in several joints a few months ago. When I

> stopped it a week or so ago, in preparation for getting mycoplasma tests,

I

> have now found that after only a few days, the brain fog, sweating, low

> fevers, disturbed sleep and fatigue returned with a vengance. In worrying

> about my joints, I was overlooking the benefits I had in other areas. I am

> sure it is from the tetracycline, because my condition deteriorated so

much

> in a few days that it was interfering with my ability ot do my part-time

> job, and I had to start back on the tetracycline yesterday to cope with

> that, and am looking hard at whether it is worth getting the tests if I

have

> to stay off the antibiotics four weeks to get accurate results. After just

> one day back on it, I am better able to function again.

> I'm sorry the AP didn't produce the benefits you were hoping for

mimianne,

> and glad that you have found something to help you for now, and that you

are

> also staying on the list. I would also urge you to think about trying

> another antibiotic, as perhaps you have some resistant species. Some

people

> do both therapies. Have you been tested for mycoplasmal infections? Hang

in

> there, and I hope you continue to feel better! Liz G

>

>

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How long were you on the AP and what did you try?

hugs,

lisbeth

rheumatic methotrexate

>From: mimianne@...

>

>guess we have all figured out that not all medicines work on all

>people. i would much rather have success w/the AP than

>methotrex., but for some of us this has just not happened and for

>others of us, methotr. has not provided relief.

> i will say that for me 5mg and even down to 2mg of prednisone

>made me feel 100% better. even that low dosage, can mask your

>pain ... i am a little worried that some people on this list are

>mistaking a benefit from the AP when in reality, it is the steriod or

>the exercise, or an herb, or something else.

>methotrex. does work for me, without prednisone or any other pain

>med. AP did absolutely nothing for me but would toss out all my

>medicines if the AP COULD work for me. i don't enjoy taking this

>CANCER med. even at low dosage, but had zero luck w/the AP.

>i am still on the list because i believe the AP does work for some

>and am hoping that some " magic " DEFINiTIVE solution will be

>found which can provide success for a greater number of us which

>are in pain.

>

>

>>

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Hi,

How long did you tak the AP before you decvided it would not work? The

reason I ask is that I have been taking 200mg / day now for over a month and

nothing has happened. I had a couple of giddy spells when I started and

I've lost about 2 kg but no herx and no better. I know a month is not long

enough but how long, 6 months 1 year?

Mike

Botswana

rheumatic methotrexate

>From: mimianne@...

>

>guess we have all figured out that not all medicines work on all

>people. i would much rather have success w/the AP than

>methotrex., but for some of us this has just not happened and for

>others of us, methotr. has not provided relief.

> i will say that for me 5mg and even down to 2mg of prednisone

>made me feel 100% better. even that low dosage, can mask your

>pain ... i am a little worried that some people on this list are

>mistaking a benefit from the AP when in reality, it is the steriod or

>the exercise, or an herb, or something else.

>methotrex. does work for me, without prednisone or any other pain

>med. AP did absolutely nothing for me but would toss out all my

>medicines if the AP COULD work for me. i don't enjoy taking this

>CANCER med. even at low dosage, but had zero luck w/the AP.

>i am still on the list because i believe the AP does work for some

>and am hoping that some " magic " DEFINiTIVE solution will be

>found which can provide success for a greater number of us which

>are in pain.

>

>

>>

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Hi Mimianne (hope that's your name :),

There are a huge number of variables associated with antibiotic therapy and a

number of antibiotics that can be used. Not all patients respond to the first

antibiotic chosen. What antibiotic did you use, what dose, how long were you on

it? Did you have side effects or was it that no improvement was seen? Many

doctors are now using the newer antibiotics, alone or in combination, as well as

the ones Dr. Brown used.

You might like to have a look at our FAQ at rheumatic.org/faq.htm - the answer

to a question " What if I'm not seeing improvement. " Other infections need to be

looked for a treated concurrently, especially streptococcus infection. Leaky

gut, candida infections, hormone levels, allergies, etc. all need to be checked

for and treated if necessary for the antibiotic to work successfully. Diet is

also important - plenty of fresh vegetables, little or no sugar, at least eight

glasses of water a day.

Let us know if we can help,

Chris.

guess we have all figured out that not all medicines work on all

people. i would much rather have success w/the AP than

methotrex., but for some of us this has just not happened and for

others of us, methotr. has not provided relief.

i will say that for me 5mg and even down to 2mg of prednisone

made me feel 100% better. even that low dosage, can mask your

pain ... i am a little worried that some people on this list are

mistaking a benefit from the AP when in reality, it is the steriod or

the exercise, or an herb, or something else.

methotrex. does work for me, without prednisone or any other pain

med. AP did absolutely nothing for me but would toss out all my

medicines if the AP COULD work for me. i don't enjoy taking this

CANCER med. even at low dosage, but had zero luck w/the AP.

i am still on the list because i believe the AP does work for some

and am hoping that some " magic " DEFINiTIVE solution will be

found which can provide success for a greater number of us which

are in pain.

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Mike,

I'm afraid a month isn't nearly enough time to see results from the AP,

unless you are extremely lucky. Each person is different, as are their

recovery times, but this treatment is generally a slow process requiring

patience and determination. Also, because the process is slow, you can

sometimes overlook slow, small gains that are being made. I was

recently feeling frustrated myself because I've been on the AP for a

year and am still experiencing significant pain and fatigue. I have,

however, realized that I have the swelling in very good control, to the

point where a new rheum I saw was questioning whether I could have RA

with such little swelling. And it's definitely the AP that is doing it

because I had to virtually eliminate my nsaid for over a month while I

was being checked for a bleeding ulcer and that's the only other

prescription I take. I was afraid the swelling would come back with a

vengeance during that time but it didn't. Now, this might not seem like

much when I still have a lot of pain but I've been told that most if not

all of the joint damage occurs when you have warm, swollen joints so the

lack of that likely means that damage is being kept to a minimum. It's

taken a year to get to this point, hopefully the next year will bring a

reduction in pain and fatigue. Patience is difficult but it certainly

is required here.

Hugs

a Peden

Mike Guinney wrote:

>

> How long did you tak the AP before you decvided it would not work? The

> reason I ask is that I have been taking 200mg / day now for over a month and

> nothing has happened. I had a couple of giddy spells when I started and

> I've lost about 2 kg but no herx and no better. I know a month is not long

> enough but how long, 6 months 1 year?

>

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Liz and all,

I would have to add that my story is much like yours. On the antibiotics I

sometimes don't feel so good, but when I went off them a year ago I got

really sick really fast. I have CFS and mycoplasma, so my symptoms of

fatigue and brain fog and flu-like symptoms are what come back. I hope

someday to be able to get off the antibiotics but for now I am just glad

they work. I take Zithromax in case Mimianne has not tried other

antibiotics. She may want to consider that.

a Carnes

> From: " Liz G. " <pioneer@...>

>

>

> > pain ... i am a little worried that some people on this list are

> > mistaking a benefit from the AP when in reality, it is the steriod or

> > the exercise, or an herb, or something else.

>

> I thought the tetracycline was doing little for me, because my progress

has

> stalled and I had a flare-up in several joints a few months ago. When I

> stopped it a week or so ago, in preparation for getting mycoplasma tests,

I

> have now found that after only a few days, the brain fog, sweating, low

> fevers, disturbed sleep and fatigue returned with a vengance. In worrying

> about my joints, I was overlooking the benefits I had in other areas. I am

> sure it is from the tetracycline, because my condition deteriorated so

much

> in a few days that it was interfering with my ability ot do my part-time

> job, and I had to start back on the tetracycline yesterday to cope with

> that, and am looking hard at whether it is worth getting the tests if I

have

> to stay off the antibiotics four weeks to get accurate results. After just

> one day back on it, I am better able to function again.

> I'm sorry the AP didn't produce the benefits you were hoping for

mimianne,

> and glad that you have found something to help you for now, and that you

are

> also staying on the list. I would also urge you to think about trying

> another antibiotic, as perhaps you have some resistant species. Some

people

> do both therapies. Have you been tested for mycoplasmal infections? Hang

in

> there, and I hope you continue to feel better! Liz G

>

>

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  • 1 month later...

Agnes, would you please tell the group how to " wrap their lines " as I have

wanted to let them know it, too, but didn't know what to tell them.

aewinchell@... wrote:

> From: aewinchell@...

>

> Hi everybody,

>

> I have dropped out for a while and I was surprised to read so

> much about methotrexate without anybody mentioning the study that came out

> just a few months ago on using Remicade with it, it stops the destruction

> of the joint. You can read about it at: http;//pslgroup.com/dg/14745a.htm

> I have a 33 year old friend who was on metho for a long time, she was happy

> with it, she wasn't in too much pain, but already had both hips replaced.

> Remicade will help stop the need for joint replacement. Of course the

> antibiotic therapy seems much better, having hope to completely get rid of

> the disease. I still didn't try it, but I have the minocin and tomorrow I

> am going to my physician to discuss it furhter.

>

> Please wrap your lines, some were way too long to read.

>

> Hugs, Agnes

>

> ---------------------------

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Babs,

Me too. I would have stuck with it if I needed it. Looking back in some

old diaries I found last week, I realized I had been on Methotrexate from

Nov. '94 til Dec. '98 when my gp asked me to wean off it when I started the

AP. I had just been diagnosed with RA and wonder if my lack of destruction

in the joints was because I started off with Metho right away. My RD gave

it to his patients at the start of treatment. I had an overlap of Minocin

and Metho having started Minocin in Oct. '98 and eventually weaning off

Metho in Feb. '99. I can honestly say I didn't see any difference in not

taking it.

Bev

>

> My 2 cents: Methotrexate, despite all the bad " joo-joo " , was a Godsend

for

> me before I started AP. It allowed me to wean off the prednisone and

> provided a tremendous reduction in swelling, pain, chills, etc. I was on

> 10mg. before seeing Dr. Trentham to start the Minocin. I am down to

2.5mg.

> I have done much, much better since starting the AP but I have to say that

> the methotrexate allowed me to function after a period of excruciating

agony.

> If the AP did not work for me (so far, so good...), I certainly would

have

> to stick with the Mxt. as long as I could despite the negative

side-effects.

> ('cuz I prefer that to crawling, too!)

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

>

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Bev: How much methotrexate were you taking when you started AP?

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

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Bev: When your dr. asked you to stop taking methotrexate, to see if the AP

was working, you were on 15 mg. a week: did you stop it all at once or were

you weaned off? I think you've discussed this before but if so, I can't

remember (duh). Thanks!

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

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That's the first script my RD gave me and he added folic acid to help in the

absorption of the metho. He started me out on 3 tablets once a week, 6

months later, it was 6 tablets, and then two appointments later he wanted to

add three more, which would have bumped it up to 22.5 mg and he wanted to

add sulfasalazine. I was lucky enuf to go online and find out about AP

just about then and haven't seen him since. Three months into the AP

which my gp dispenses, he asked me to stop taking the metho so I'd know if

the AP was working. I did and it is.

Bev

> Bev: How much methotrexate were you taking when you started AP?

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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Babs,

Glad you asked because he said to wean off them. I was on the 15 mg and

for two week periods dropped one pill every two weeks. So for the first

week, I took five a week for two weeks, then four a week for two weeks,

etc.

Bev

> Bev: When your dr. asked you to stop taking methotrexate, to see if the

AP

> was working, you were on 15 mg. a week: did you stop it all at once or

were

> you weaned off? I think you've discussed this before but if so, I can't

> remember (duh). Thanks!

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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Bev: If you weaned off methotrexate by one pill every 2 weeks, that was a

more aggressive schedule than the one Dr. Trentham has me on - weaning off

one pill every six weeks since starting the AP. Glad it worked for you and I

sure am looking forward to March 7th when I am hoping he tells me to

discontinue taking the one pill a week I'm on now! :>) Thanks for your

feedback.

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

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Babs,

My gp recommended this route. I would have just quit it cold turkey. I

didn't have any kind of reaction. The diahrea that I had suffered from for

2 years stopped too after two months of being metho free. An extra bonus.

Bev

> Bev: If you weaned off methotrexate by one pill every 2 weeks, that was a

> more aggressive schedule than the one Dr. Trentham has me on - weaning off

> one pill every six weeks since starting the AP. Glad it worked for you

and I

> sure am looking forward to March 7th when I am hoping he tells me to

> discontinue taking the one pill a week I'm on now! :>) Thanks for your

> feedback.

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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Excuse me, but the diarrhea lasted for 2 years and you still continued the

drug? Why would you take a drug that gave you diarrhea?

Mark

Re: rheumatic Methotrexate

> From: " Briarwood " <briarwood@...>

>

> Babs,

> My gp recommended this route. I would have just quit it cold turkey. I

> didn't have any kind of reaction. The diahrea that I had suffered from

for

> 2 years stopped too after two months of being metho free. An extra

bonus.

>

> Bev

>

>

>

>

> > Bev: If you weaned off methotrexate by one pill every 2 weeks, that was

a

> > more aggressive schedule than the one Dr. Trentham has me on - weaning

off

> > one pill every six weeks since starting the AP. Glad it worked for you

> and I

> > sure am looking forward to March 7th when I am hoping he tells me to

> > discontinue taking the one pill a week I'm on now! :>) Thanks for your

> > feedback.

> >

> > Babs

> > RA 8/98, DX 4/99, AP 11/99

> > 200 mg. Minocin

> > 2.5 mg. Methotrexate

> > 112 mcg. Synthroid

> > 2 mg. Hytrin

> > 10 mg. Lipitor

> > Mestinon

> > Vits. & Misc. Suplmts.

> >

>

>

> ---------------------------

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I asked my RD if it was from the Metho and he said No, so I figured it was

just part of my disease or some gastro problem I couldn't get rid of. I

didn't realize it was the problem til I stopped taking it. It gradually

started a few months after I started taking it, so I didn't connect it with

the Metho until I stopped the metho and that solved the problem.

Bev

> Excuse me, but the diarrhea lasted for 2 years and you still continued the

> drug? Why would you take a drug that gave you diarrhea?

>

> Mark

>

> Re: rheumatic Methotrexate

>

>

> > From: " Briarwood " <briarwood@...>

> >

> > Babs,

> > My gp recommended this route. I would have just quit it cold turkey.

I

> > didn't have any kind of reaction. The diahrea that I had suffered from

> for

> > 2 years stopped too after two months of being metho free. An extra

> bonus.

> >

> > Bev

> >

> >

> >

> >

> > > Bev: If you weaned off methotrexate by one pill every 2 weeks, that

was

> a

> > > more aggressive schedule than the one Dr. Trentham has me on - weaning

> off

> > > one pill every six weeks since starting the AP. Glad it worked for

you

> > and I

> > > sure am looking forward to March 7th when I am hoping he tells me to

> > > discontinue taking the one pill a week I'm on now! :>) Thanks for

your

> > > feedback.

> > >

> > > Babs

> > > RA 8/98, DX 4/99, AP 11/99

> > > 200 mg. Minocin

> > > 2.5 mg. Methotrexate

> > > 112 mcg. Synthroid

> > > 2 mg. Hytrin

> > > 10 mg. Lipitor

> > > Mestinon

> > > Vits. & Misc. Suplmts.

> > >

> >

> >

> > ---------------------------

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Bev, Mark: I wonder - Might there have been some type of intestinal

infection that was allowed to fluorish due to immunosuppression by

methotrexate? And when the mxt was discontinued, it was brought back under

control?

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

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Well that is probably answered better by a doctor. It can be a side effect

of the drug, just as it is for many drugs, including antibiotics. I can't

speak for Bev, but at the levels I'm taking (12.5mg/week), there isn't much

immunosuppression going on - mostly anti-inflammatory action. I suspect

that the drug just didn't agree with Bev and that sort of thing happens

routinely with many patients who try different drugs. Usually, if I

understand correctly, folic acid will help with those side effects, but I

believe Bev was taking folic acid at the time.

Mark

Re: rheumatic Methotrexate

> Bev, Mark: I wonder - Might there have been some type of intestinal

> infection that was allowed to fluorish due to immunosuppression by

> methotrexate? And when the mxt was discontinued, it was brought back

under

> control?

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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Babs,

It is possible I suppose. It is too much of a co-incidence to think it

just stopped when I got the metho out of my system.

Bev

> Bev, Mark: I wonder - Might there have been some type of intestinal

> infection that was allowed to fluorish due to immunosuppression by

> methotrexate? And when the mxt was discontinued, it was brought back

under

> control?

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 2.5 mg. Methotrexate

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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  • 3 weeks later...

Dear Tracey,

My son jason takes methotrexate weekly and has been on it for

about two years now. He too takes folic acid daily and the prednisone when

needed during an active flare. The side effects are pretty daunting when you

read of them, i know and i will admit that this did worry me alot at first.

It still does, but whats the alternative? It seems so unfair that to resolve

symptoms of one illness, your child is exposed to all sorts of risks from

many others. We have`nt had too many problems with the methotrxate, unlike

the voltarol which jason took and it made him really ill. The methotrexate

always causes a stomach upset the next day, despite me giving it in the

morning and making sure jason eats alot of cereal based foods that day. This

helps with the heart burn, but unfortunately not the diareora! Just recently

jason has been getting eye irritation which he has had to have drops for. He

has regular bi monthly screening at the eye hospital because of the risks to

the eye from the methotrexate.

I would`nt say the methotrexate is controlling the JRA that well at the

moment, over the last six months his flares have been getting more frequent,

but that we are due for assessment next month. He has monthly blood tests,

so far they have all been ok.

Hope this helps

carol (ps he takes four 2.5mg tablets weekly)

______________________________________________________

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I didn't know MTX affected the eyes. What does it do? I don't remember

reading that in the list of side effects.

~Amy (daughter takes 5 mg weekly)

>has regular bi monthly screening at the eye hospital because of the risks to

>the eye from the methotrexate.

>

> carol (ps he takes four 2.5mg tablets weekly)

>______________________________________________________

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Hi Amy

As far as I know, methotrexate has no negative effects on the eyes. It

is used, however, to treat some kids with eye involvement. has

been on methotrexate for most of the last five years, and eye

complications due to mtx have never been mentioned.

Liz

Amy Fox wrote:

>

> From: Amy Fox <foxpro@...>

>

> I didn't know MTX affected the eyes. What does it do? I don't remember

> reading that in the list of side effects.

> ~Amy (daughter takes 5 mg weekly)

>

> >has regular bi monthly screening at the eye hospital because of the risks to

> >the eye from the methotrexate.

> >

> > carol (ps he takes four 2.5mg tablets weekly)

> >______________________________________________________

>

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