Re: Question about Methotrexate

[Guest guest]

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[Guest guest]

Aimee,

My daughter take mtx and has for almost a year. She takes it every Friday

also, but she doesn't have any sickness behind it. As a matter of fact on

saturdays she rides her bike. She lost all her hair and had mouth sores

behind the metho. and yes more joints are affected , but she's a string

willed child and tries not to let nothing get her down and pushes herself.

She even loves going to have lab work done after years of screaming and

hollering. Someone else make have some input on the mtx too.

Ywellen(Zhondrese's mom0

[Guest guest]

My 2 1/2 year old daughter has been taking Meth. once a week since Feb. The

dosage is fairly small (.2ml). The only side effect I have been able to see

is a decreased appetite the following day.

[Guest guest]

Hi Beth Ann,

My rheumy cautioned against any alcohol consumption on the days I take MTX,

but said that a glass of wine to celebrate a birthday or at a holiday table

would not be a problem. Presumably your rheumatologist has already ordered

you to have a follow up blood test in a month or 6 weeks in order to monitor

the effect MTX is having on your liver and other functions. This will be a

better indication of whether you can be on MTX with an occasional (emphasis

on occasional) drink, than an outright prohibition on drinking. I don't care

if I never have a drink, but I have a friend who has been on MTX for about 17

years, and she has continued to drink in sincere moderation without any

adverse liver problems throughout that period. There are many

rheumatologists, however, who caution against any alcohol whatsoever.

I am sure the holidays will be more enjoyable for you once MTX starts helping

you with or without glass of wine.

Best wishes,

Kathy

> Hello everyone,

> I was just put on Methotrexate and have only been on it for 2 weeks

> now. I noticed on the prescription bottle that it says avoid

> alcohol. I normally do not drink that much anyway, just socially,

> but I was thinking with the holidays coming up that I would like to

> have a glass of wine with our holiday dinner. Does anyone know if

> that is okay, and what would be the reaction if I did have a drink?

> Thamks in advance for any advice. Beth Ann

>

[Guest guest]

Hi Beth Ann,

I am on MTX and my Rheumatologist also described the additive effects

as noted in the moderators comments. Previous to being on MTX, I was

a social drinker. I usually had 1,2 drinks on any given week end

night, and an few occaisions 3. During the week I rarely had any

alcohol. But I also questioned " Would 1 drink hurt? " . While It's

not clear if an occaisional drink would really cause any harm, I

believe you should ask yourself, " What's more important to me a drink

or my health? " and why not be the designated driver? While I would

never consider myself to be an alcoholic, let's face the truth, most

people(myself included)drink to feel the effects of alcohol. 1 drink

is not likely to give you that effect, so why take chances with your

health? If you really want to " get drunk " , MTX probably is not a good

choice of medication. Yes I have chosen a hard line approach for

myself and realize that people will have differing views(and I am

sure that to hear them) but I went through a long time of horrible

pain & despair. Then I went on MTX and my quality of life has

changed dramatically, I am not going to knowingly do anything to mess

it up. You have to make a decision that is right for you and one that

you can feel right about.

I hope this helps you to make your own decision.

Be Well,

-- In @y..., " beth0921 " <bstark@h...> wrote:

> Hello everyone,

> I was just put on Methotrexate and have only been on it for 2 weeks

> now. I noticed on the prescription bottle that it says avoid

> alcohol. I normally do not drink that much anyway, just socially,

> but I was thinking with the holidays coming up that I would like to

> have a glass of wine with our holiday dinner. Does anyone know if

> that is okay, and what would be the reaction if I did have a drink?

> Thamks in advance for any advice. Beth Ann

>

>

>

> [Moderator's note: Hi Beth. My personal experience is that there is

no particular reaction at all from alcohol due to being on MTX (other

than the slight inebriation that's normal from alcohol of course). My

rheumatologist explained it to me thusly: MTX is toxic to your liver,

and so is alcohol. As long as you have a reasonably healthy diet so

that you get all the nutrients you need, your liver can repair itself

from damage done by moderate use of either of these toxic agents.

When you combine them together however, it's more difficult for the

liver to repair itself. Having one drink isn't (in my rheumy's

opinion) going to cause a noticeable problem. What *is* likely to

cause a problem is chronic or constant consumption of excess amounts

of either of these toxic agents (MTX and alcohol) either alone or

especially in combination - in other words the damage done by each of

them is more or less additive. My rheumy is Armenian, and one thing I

found interesting (in fact she mentioned it to me in muted tones

almost as though she wasn't supposed to be saying it to me) is that

most doctors in Europe don't caution their MTX patients about

refraining from alcohol consumption at all. I imagine it's done here

in the USA primarily because of all the malpractice suits. In fact,

if you read the PDR information on MTX, it only cautions about

*excessive* alcohol consumption - not " normal " alcohol consumption. I

view it as a statistical thing - much like a crap shoot. Your chances

of rolling craps on any single throw of the dice is only 11%, but the

chances of rolling craps sometime during a sequence of 100 rolls is

99.999%. The tradeoff between acceptable risk and happiness is, and

hopefully always will be, a personal decision. Ron]

[Guest guest]

Hello everyone. Just one quick question on MTX. I have a scheduled

appointment with my Rheumy today where he will prescribe MTX. How

long should I expect to wait before I see improvement (if I do see

any!)? Are the side-effects immediate? I have been on azulfidine

for 11 months with zero relief. Also, should I ask about Enbrel or

try MTX first?

> > Hello everyone,

> > I was just put on Methotrexate and have only been on it for 2

weeks

> > now. I noticed on the prescription bottle that it says avoid

> > alcohol. I normally do not drink that much anyway, just

socially,

> > but I was thinking with the holidays coming up that I would like

to

> > have a glass of wine with our holiday dinner. Does anyone know

if

> > that is okay, and what would be the reaction if I did have a

drink?

> > Thamks in advance for any advice. Beth Ann

> >

> >

> >

> > [Moderator's note: Hi Beth. My personal experience is that there

is

> no particular reaction at all from alcohol due to being on MTX

(other

> than the slight inebriation that's normal from alcohol of course).

My

> rheumatologist explained it to me thusly: MTX is toxic to your

liver,

> and so is alcohol. As long as you have a reasonably healthy diet so

> that you get all the nutrients you need, your liver can repair

itself

> from damage done by moderate use of either of these toxic agents.

> When you combine them together however, it's more difficult for the

> liver to repair itself. Having one drink isn't (in my rheumy's

> opinion) going to cause a noticeable problem. What *is* likely to

> cause a problem is chronic or constant consumption of excess

amounts

> of either of these toxic agents (MTX and alcohol) either alone or

> especially in combination - in other words the damage done by each

of

> them is more or less additive. My rheumy is Armenian, and one thing

I

> found interesting (in fact she mentioned it to me in muted tones

> almost as though she wasn't supposed to be saying it to me) is that

> most doctors in Europe don't caution their MTX patients about

> refraining from alcohol consumption at all. I imagine it's done

here

> in the USA primarily because of all the malpractice suits. In fact,

> if you read the PDR information on MTX, it only cautions about

> *excessive* alcohol consumption - not " normal " alcohol consumption.

I

> view it as a statistical thing - much like a crap shoot. Your

chances

> of rolling craps on any single throw of the dice is only 11%, but

the

> chances of rolling craps sometime during a sequence of 100 rolls is

> 99.999%. The tradeoff between acceptable risk and happiness is, and

> hopefully always will be, a personal decision. Ron]

[Guest guest]

Hi Tanis,

I also questioned starting our daughter on methotrexate. She was

barely a year old when she was diagnosed 2 months ago, and once we

saw the ped. rheumy and she upped her prelone dose and added mtx, I

knew the long term steroid use was bad, but I had no idea what we

were trying to replace it with was so scary! I read thru the leaflet

that came with the rx, and I just about died! No way was I giving my

child something like that! What's worse, the disease or the

treatment! We ended up deciding our only choice was to give it to

her although I did check with my pharmacist friend-whether she'd give

her own children the mtx, and she said most definitely YES, that

getting the inflammation under control asap is the best route for her

and she was glad it was available in injectible so she could use it.

Since starting it, we have upped her dose from 0.1cc orally to 0.3cc

injected-just last week. She had no side effects to begin with, I

did notice she was more cranky over the weekend (we give it to her on

fridays), but no vomiting or such. After the first increase, she

spit up a few times so we added a vitamin with folic acid in it.

When they upped her dose again they added folic acid by rx, so she

takes that now instead of the vitamin. After her first injection we

noticed she had a mouth sore on her gums-she couldn't decide what

pacifier was best-just kept switching all day so we checked out her

mouth. She didn't complain much or eat less, so I don't think it was

real bad. Otherwise, we haven't noticed any other side effects. As

far as it working-that's debatable. She is off my lap and playing

again, something she hasn't done in almost 6 weeks, so that's a good

sign. At her last rheumy appt. a week ago they thought she was doing

better also-less swelling. (She has baby fat, so as parents we have

been somewhat clueless as to what is swollen and what isn't.) We've

been able to wean some of the prelone back, but she's still taking

that twice daily, I'm not sure what her labs are supposed to look

like-I just know they are still high. So I guess what I'm saying is

that she is still " in progress. " Sorry I couldn't help more by

telling you it has done wonders! Best of luck as you make decisions

about the next step.

Tracey (mom to Madi 14mo. systemic)

>

> Hey-

> I am more of a lurker, not really posting often, or checking the

> boards as often as I'd like, but I 've got a question...

> We went for Kylie's follow up today, and after 6wks of naproxen no

> change. The swelling in her 3 toes has not decreased whatsoever.

> It seems she now has some swelling in one of her big toes and her

> right ankle. Her rheumy has put her on Methotrexate. My husband

> and I are concerned about the side effects and wold love to hear

> your experience with the drug. I know that every child responds

> differently, but we are trying to research this as much as possible.

> What types of side effects did your child have? Did it bring down

> the swelling? I am feeling like we're in a catch-22 because I

don't

> want the swelling to cause long term damage (Kylie NEVER complains

> of pain, runs around like a typical 3 yr old) but yet I don't want

> to continue giving my baby poison. I know that mtx is supposed to

> have a great track record but, you never know.

> I'm freaking out and need some support, you guys have always been

> great!

> Looking forward to meeting some of you in July!!

> Thanks

> Tanis

>

> Kylie 3 pauci- possible psoratic??

>

[Guest guest]

Our 7 yr old daughter started this 2 months ago. We were very

concerned about giving it to her, and finally we just decided we had

to trust the rheumy. It has been a long road for our daughter as she

was misdiagnosed time and again over 4 years until finally receiving

the arthritis diagnosis (the correct one!), so we have been fairly

mistrustful of specialists. Anyway, the other meds

she was on weren't doing the trick, and so we started the mtx.

She hasn't had any noticeable side effects so far. She takes it orally

on Friday nights. She also takes a folic acid tablet each day

(prescription folic acid) and a multi vit. and also her calcium

tablets. She is still on the sulindac as well each day. She goes

every 4 weeks to get her blood drawn while on the mtx.

We go back to the dr. tomorrow, so we are keen to hear what they have

to say about any changes they see.

Take care,

[Guest guest]

-Tanis,

I know its a hard choice to put our children on these drugs. To me

it was a leap of faith. I have faith in the doctors. To be honest I

try not to read too much info on the medications.

-It was a fairly easy choice to make once i saw adults who had JRA

as kids and who were not as lucky as our children are with the

wealth of drugs available nowadays. One look at their twisted joints

and thinking that could be my child of i do nothing made me feel

blessed and lucky to have a choice.

good luck....

hugs Helen and (8,systemic)

- In , " littlet_78 " <littlet_78@...> wrote:

>

> Hey-

> I am more of a lurker, not really posting often, or checking the

> boards as often as I'd like, but I 've got a question...

> We went for Kylie's follow up today, and after 6wks of naproxen no

> change. The swelling in her 3 toes has not decreased whatsoever.

> It seems she now has some swelling in one of her big toes and her

> right ankle. Her rheumy has put her on Methotrexate. My husband

> and I are concerned about the side effects and wold love to hear

> your experience with the drug. I know that every child responds

> differently, but we are trying to research this as much as

possible.

> What types of side effects did your child have? Did it bring down

> the swelling? I am feeling like we're in a catch-22 because I

don't

> want the swelling to cause long term damage (Kylie NEVER complains

> of pain, runs around like a typical 3 yr old) but yet I don't want

> to continue giving my baby poison. I know that mtx is supposed to

> have a great track record but, you never know.

> I'm freaking out and need some support, you guys have always been

> great!

> Looking forward to meeting some of you in July!!

> Thanks

> Tanis

>

> Kylie 3 pauci- possible psoratic??

>

[Guest guest]

hi Geogina & everyone,

I am sitting here with tears in my eyes - Robbie hasn't fought this disease as

long as Josh and - but it is beginning to feel like forever, as we are

approaching our 5th anniversary of the beginning of this journey in June - hard

to believe. You describe the thoughts and feelings of that first

hospitalization so clearly & the time after, that it feels like you were reading

from my memories! I too feel the same about the Methotrexate - and actually,

when I allow myself, feel quite angry at the Doctors for taking so long to try

it - and at myself for not pushing for it sooner - and again at the doctors for

making me fight for it so hard. I keep thinking it was the ridiculously high po

steriods (over 60 mg/day) that last flare that sent his bone density to the

level that caused the compression fracture in his spine to occur - and if I look

at the changes in his bone density tests, that theory is pretty much confirmed,

as the one just before the flare was improved - and the one done after we knew

about the fracture showed the dramatic decrease in density. But, I try not to

allow myself to go down that road too often - have to let go of the anger and

guilt. And be grateful that the methotrexate has done what nobody (except some

here on the list) thought it would do!

Robbie is busy, busy these days - cub scouts and baseball have had us out nearly

every night this week & Math Night at the school tonight and tournament team

practice tomorrow night will complete the week - then onto the busy weekend!

didn't seem to be himself at the game on Monday evening - even some of

the parents asked me if he was ok, so it wasn't just me. Later he admitted that

he'd been having leg & back pain before the game, but didn't tell me because " it

wasn't too bad " and he knew I'd make him sit on the bench. He ended up catching

his first " pop-up " to get a kid out - (he's made lots of catches, line drives,

etc - but he's had trouble with the pop ups in the real game setting - so he was

on cloud nine). Later, I had quite a scare, as he was playing first base &

stopped the ball, and made it to first to get the kid out - and the kid running

to first railroaded Robbie, knocking him flat on his back and landing on him

(and he was no little kid) - the coaches were there in a heartbeat - and my eyes

filled with tears, as I stood at the opening of the fence, ready to head in

myself, listening to my baby cry. Finally, he was back on his feet & tears

gone, ready to continue the game. Later, when they were back to batting he told

me that his shoulder hurt - but that he was ok. I checked him out, saw no

apparrent signs of injury and his ROM was good - so I let him continue - though

quite frankly I was ready to go home (with Rob in tow, of course). He got an

extra dose of prednisolone that evening (which we are supposed to do when he has

an injury due to the adrenal insufficiency - on the few times we've done this he

always gives me that look - what are you doing Mom - I only take steriods in the

mornings?) His team won - he wasn't too happy going home that night though -

he'd struck out twice and was gotten out at first once & was whiney and cranky -

I was afraid a flare may be approaching - but Tuesday morning he hopped out of

bed like I haven't seen him do in awhile, saying he felt great and was ready for

the Ridgeway Invitational at school (Special Olympics where the pair the kids

into teams of two, one with little or no health issues with another child) - he

participated last year - both last year and this one,he and his team mate

(differerent kids each year) achieved 1st place in his heat - so he was quite

happy. A busy outing with the scouts after school though tired him out - and he

was in bed with an apparrent charley horse in one of his legs after we got home

- then I found out that they didn't even have the kids stretch before coming out

for the events. (I was there - I should have asked him - but I remembered

peeking in the gym last year before the kids marched out for the opening

ceremony & they were all on their feet stretching & warming up.) Anyway at his

game last night he made two doubles and made his first home run! He was

grinning from ear to ear. He is really enjoying the season this year - but I am

sure he is overdoing it. Last night on the way to the car, he and a friend had

been playing tag, chasing each other, and I told Rob to stop, as we were

approaching the parking lot - and he was running to get away from his friend,

neither wanting to be the last one " it " - and wasn't watching where he was going

- and ran right into my hand that was holding the keys -his head (temple area)

hitting my wrist in full force - my wrist still hurts and he of course was

crying immediately. I sat down on the curb and looked for scratches and bumps

at first & then held him to try to calm him down, as the tears slowed down & we

headed for the car, he started to blame his friend for continuing to chase him

(I told him he should have stopped when I told him to, no matter who was chasing

him) then he started to try and blame me, saying that I was in his way - I again

reminded him that he'd been told to stop running, that he wasn't watching where

he was going when he ran into me & thank goodness it wasn't a car. (even though

most people were gone and the lot was nearly empty - it wasn't empty and he had

been told to stop) - anyway he was told that he wasn't getting more sympathy

until he accepted that fact aht he had caused his own headache. Boys! : )

What a night - here's hoping that Math night tonight will be less eventful!

Well, my break is over -so back to work.

Val

Rob's Mom (8,systemic)

Re: Question about Methotrexate

Hi Tanis,

I'm sorry to hear that Kylie is having inflammation in even more joints.

That kind of news can be very unsettling. While there's always a chance that

arthritis will go into remission, it's an insidious disease and one that can

really take it's toll on a youngster. Children are so resilient, though.

Some will never complain. They get used to the feelings they have and may

even consider daily pain to be a normal experience - if it's all they've

known since they were little.

My son was older when he got arthritis, shortly after his 6th birthday. He

was hospitalized for two weeks. Towards the end of his stay our pediatrician

came to talk with us about a treatment plan. I didn't want to accept that my

previously healthy son could have a serious chronic condition. They saved

him, he was recovering, and soon life would be back to normal. But he

insisted on talking about medications. At that time, the strongest drug in

our home was probably ... caffeine. Seriously! He stressed how important it

was that Josh take the meds on a regular schedule. He'd been getting

intravenous steroids (and nutrition, etc.) and the day they took the IV's

out he started taking Prednisone pills. There were risks of major

complications if he didn't continue so it wasn't something we had a choice

about. That decision wasn't ours. We just wanted Josh healthy again - and

back at home.

Then he talked to us about continuing to take the Naprosyn and about another

drug used for cancer patients ... Methotrexate. I was dumbfounded! I never

expected anything like this to happen. I just wanted the nightmare to be

over, which seemed already to be happening as my son was gaining strength

day by day. I never wanted to give my child any medications on a regular

basis - with the exception of, possibly, a multi-vitamin - and here was this

man, who I held in high regard, telling me point blank that after consulting

with a pediatric rheumatologist they felt it would be the best course of

action. I wanted a time frame. I wanted to know how long he'd need to use

the drugs before he could walk again, run again, not have the high fevers

morning and night, and be free of pain. There was no definitive answer,

though. I wanted to know for how long he would continue to be sick if we

didn't give him the drugs. That, however, turned out not to even be an

option for us.

Now, we're coming up on our 11th year anniversary. Like Liz's daughter

, Josh has been using MTX for over a decade. No apparent ill effects

although Josh does have some extra saliva production for a couple hours

after injection and a weird, not really light-headedness or nauseous-ness

but some similar and hard to describe symptom that fortunately wears off

within 6 to 18 hours. The doses used for arthritis are hundreds to thousands

times less than what's ordinarily used for cancer treatment. He started off

with the little yellow pills and after a few years he switched to the

injectable ... which had a huge impact on the severity of his arthritis

symptoms and blood test results. I seriously thought the lab had made a

mistake when I saw the first test results about 4 weeks after he switched to

injections, as nearly all markers were within normal ranges - something that

hadn't happened before. Josh, you see, has a history of extremely elevated

white cell count, SED rate, CRP and low hemoglobin and hematocrit numbers.

Sort of normal for a kid with active systemic arthritis. MTX was able to

quiet the arthritis like nothing else could and allowed him to use a minimal

level of steroids.

The treatments we've used haven't stopped the arthritis completely. Instead,

Josh has long periods of medicated remission with occasional flare-ups. So,

since it didn't completely stop the arthritis, was it even worth it?

Absolutely. His quality of life was much improved and his joints have been

maintained in remarkably good condition. We've met kids (and adults) who

haven't had as aggressive treatment and we've seen first-hand the physical

destruction this disease can cause to a body. You need strong weapons

sometimes, to help fight this battle. The prognosis for this disease didn't

used to be so good. Over time, as more treatment options became available,

the prognosis has gotten better. Methotrexate has been around for a very

long time and it's a safe and very effective drug with few side effects, for

most kids with arthritis. Not sure if this will help any but just wanted to

let you know about our experience.

Aloha,

Georgina