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Shandi,

I recently went through this with MTX. Two things

helped--switching to shots, which helped the direct

assault on my tum, and upping folic acid x5 (5

mg/day), which has all but quelled the nausea. It's

weird to self-inject, but it really has made a

difference.

Hope this helps.

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Hi,

I have been on MTX for 4 months and before that a run of 4 months also last

year. Some weeks are REALLY bad stomach and some weeks nothing it just doesnt

make sense?? Hope you feel better soon. Latisha

MNP <mnpmail@...> wrote:

If any, what side effects have you experienced and for how long while on MTX?

I restarted MTX after failed or too expensive *designer* drugs. I don't

remember feeling this rough before! I took it last Monday and did fine. This

past Monday I took my second dose and still haven't recovered. My stomach is

still churning.

Shandi

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anyone on injectable mtx have a reaction as tongue swelling, or feel it as

it went thru your veins? now my 2nd week off after almost 4 yrs. still not sure

what we will do next. my rheumi told me not to worry, many drugs out there.

but i only have medicare and the state plan which i may loose because i made

$80 too much last year. yes i am getting scared. remembering what life was

like before mtx

kathy in il

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that is strange, she said it is not listed as a side effect and that is why

she said i had an allergic reaction. i was curious she uped my dose to .5 and

that is when i came down with pneumonia

kathy in il

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Hi Shandi,

I was also having the same issues with my stomach while taking mtx. Are you

getting enough folic acid? I increased my folic acid to 1200mcg a day and have

not had stomach issues since. I am taking 15mg of mtx weekly. Just a thought

that may help. Peg

MNP <mnpmail@...> wrote:

If any, what side effects have you experienced and for how long while on MTX?

I restarted MTX after failed or too expensive *designer* drugs. I don't

remember feeling this rough before! I took it last Monday and did fine. This

past Monday I took my second dose and still haven't recovered. My stomach is

still churning.

Shandi

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My tongue swelled a lot but I didn't know why. I got the answer here, I

wasn't taking enough Folic Acid. I was taking 1 mg per day, and it wasn't

enough. The Rummy I was using ignored that fact when he increased my MTX to

1.2 cc. I went up to 5 mg of Folic Acid and after a while, a month or so, it

went back down to comfortable, but apparently the damage was done, and it

gets tender sometimes and is larger than it was. At least it's better now.

Dennis

Re: [ ] MTX Side Effects

> anyone on injectable mtx have a reaction as tongue swelling, or feel it as

> it went thru your veins? now my 2nd week off after almost 4 yrs. still not

> sure

> what we will do next. my rheumi told me not to worry, many drugs out

> there.

> but i only have medicare and the state plan which i may loose because i

> made

> $80 too much last year. yes i am getting scared. remembering what life

> was

> like before mtx

>

> kathy in il

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Hi my name is Missy and my daughter, is 6. She has had Systemic JRA since

she was 2 and is now taking Remicade 10mg/kg IV every 4 weeks, MTX inj. .5cc

once a week, and 25 mg of Prednisone a day.

I have a couple of questions I was wondering if anyone could answer. I've

asked a few before, but thought I may get a few different views. My daughter has

a strange symptom I've never heard of. She picks the skin off her tongue?? Your

post is the first I've seen about tongue symptoms. I don't understand why she

does it. It looks normal enough to me.

None of her docs have ever said she should take folic acid. Could someone tell

me what it is supposed to help? She is definately showing ALL the signs of the

Prednisone use. Last time she took it she doubled her weight-- when she was 3.

She weighed more then than she does now at 6. She lost it all but now is gaining

again being on 20 mg/day for so long (2 months). Her skin is thinning, little

white fur on her face, very thirsty all the time, not to mention starving all

the time. Last time she lost a lot of bone density. They said it was just

leaking out of her bones. (She was on it for over a year when she was 3). She is

soooo fussy lately. She sleeps about 14 - 15 hours a day, could probably sleep

more, but I'm always afraid she won't be able to sleep for bedtime. Anyone have

any ideas on how to combat any of these side effects? Any advice would be

appreciated, even some the docs haven't given you, just something you've tried

or eaten that made you feel better????

Thanks,

Missy

betnden@... wrote:

My tongue swelled a lot but I didn't know why. I got the answer here, I

wasn't taking enough Folic Acid. I was taking 1 mg per day, and it wasn't

enough. The Rummy I was using ignored that fact when he increased my MTX to

1.2 cc. I went up to 5 mg of Folic Acid and after a while, a month or so, it

went back down to comfortable, but apparently the damage was done, and it

gets tender sometimes and is larger than it was. At least it's better now.

Dennis

Re: [ ] MTX Side Effects

> anyone on injectable mtx have a reaction as tongue swelling, or feel it as

> it went thru your veins? now my 2nd week off after almost 4 yrs. still not

> sure

> what we will do next. my rheumi told me not to worry, many drugs out

> there.

> but i only have medicare and the state plan which i may loose because i

> made

> $80 too much last year. yes i am getting scared. remembering what life

> was

> like before mtx

>

> kathy in il

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I discovered the link between the tongue swelling and MTX when I

Googled " folic acid deficiency " . I find a lot of helpful info. on the

InInternet.

Sierra

>

> that is strange, she said it is not listed as a side effect and that

is why

> she said i had an allergic reaction. i was curious she uped my dose

to .5 and

> that is when i came down with pneumonia

>

> kathy in il

>

>

>

>

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Hi Missy,

Please talk to your doctor about folic acid. These days any

rheumatologist worth her/his salt prescribes folic acid along with

MTX. MTX severely depletes the body of folic acid. Folic acid

deficiency could be causing your daughter's tongue symptoms and

fatigue. I take 2-3 mg. a day. (Started out with 1 mg. but it wasn't

enough.) Sending good thoughts your way. It must be so hard to watch

your little girl go through this...

Sierra

> My tongue swelled a lot but I didn't know why. I got the answer

here, I

> wasn't taking enough Folic Acid. I was taking 1 mg per day, and it

wasn't

> enough. The Rummy I was using ignored that fact when he increased

my MTX to

> 1.2 cc. I went up to 5 mg of Folic Acid and after a while, a month

or so, it

> went back down to comfortable, but apparently the damage was done,

and it

> gets tender sometimes and is larger than it was. At least it's

better now.

>

> Dennis

>

> Re: [ ] MTX Side Effects

>

>

> > anyone on injectable mtx have a reaction as tongue swelling, or

feel it as

> > it went thru your veins? now my 2nd week off after almost 4 yrs.

still not

> > sure

> > what we will do next. my rheumi told me not to worry, many drugs

out

> > there.

> > but i only have medicare and the state plan which i may loose

because i

> > made

> > $80 too much last year. yes i am getting scared. remembering

what life

> > was

> > like before mtx

> >

> > kathy in il

>

>

>

>

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I'll be sure to pay attention to my tongue from now on. I had no idea.

Thanks, you guys.

betnden@... wrote:

My tongue swelled a lot but I didn't know why. I got the answer here, I

wasn't taking enough Folic Acid. I was taking 1 mg per day, and it wasn't

enough. The Rummy I was using ignored that fact when he increased my MTX to

1.2 cc. I went up to 5 mg of Folic Acid and after a while, a month or so, it

went back down to comfortable, but apparently the damage was done, and it

gets tender sometimes and is larger than it was. At least it's better now.

Dennis

Re: [ ] MTX Side Effects

> anyone on injectable mtx have a reaction as tongue swelling, or feel it as

> it went thru your veins? now my 2nd week off after almost 4 yrs. still not

> sure

> what we will do next. my rheumi told me not to worry, many drugs out

> there.

> but i only have medicare and the state plan which i may loose because i

> made

> $80 too much last year. yes i am getting scared. remembering what life

> was

> like before mtx

>

> kathy in il

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  • 3 weeks later...
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I started MTX about 4 weeks ago. Since I went up to a full 10 mgs (1

Pill) I am having confusion that lasts 2 or 3 days after taking the

pill. I make bad judgements when driving and cannot remember where I

left my car at the store. My husband says I'm " not there. " He has

forbidden me to drive until I can carry on a conversation with him and

prove I can drive with him in the car.

I am also having extreme dizzy and tiredness that happens quickly then

I sleep for 2 to 8 hours at a time. It usually starts with a feeling

in my upper chest that something is tight and fluttery inside, then I

get a headache. The next thing I know I am so sleepy I can't say awake.

Anybody else have this problem???

Stacey

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Hi , I've been on the MTX for a couple of years now the fatige isn't so bad now but still comes at times the dizzyness i still get but find if i drink more water it helps a lot confusion and brain fog ,, umm now thats a good question i havent noticed it effecting my abbilty to drive but it has done a job on my memory and other decision making but i'm not sure it was the MTX since i've been haveing trouble with it for a long while but it has gotten worse in the last two years no douth . The headachs are common with me , and i allso have unexplained chest pains a lot in the last several months , so we'll see what others have to say . johnrutledgestacey <rutledgestacey@...> wrote: I started MTX about 4 weeks ago. Since I went up to a full 10 mgs (1 Pill) I am having confusion that lasts 2 or 3 days after taking the pill. I make bad judgements when driving and cannot remember where I left my car at the store. My husband says I'm "not there."

He has forbidden me to drive until I can carry on a conversation with him and prove I can drive with him in the car. I am also having extreme dizzy and tiredness that happens quickly then I sleep for 2 to 8 hours at a time. It usually starts with a feeling in my upper chest that something is tight and fluttery inside, then I get a headache. The next thing I know I am so sleepy I can't say awake.Anybody else have this problem???Stacey

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I went to the dr yesterday and she has decided all of my problems were too bad to continue the MTX she put me on Arava. Today I don't feel any side effects at all. Hopefully, I won't have the confusion anymore. STacey Randall <karenrandall54@...> wrote: >> I started MTX about 4 weeks ago. Since I went up to a full 10 mgs (1 > Pill) I am having confusion that lasts 2 or 3 days after taking the > pill. I make bad judgements when driving and cannot remember where I > left my car at the store. > My husband says I'm "not there." He has > forbidden me to drive until I can carry on a conversation with him and > prove I can drive with him

in the car. I have noticed the same, though perhaps not to the same extent you are experiencing. But I forgot to put the car in neutral when going through the car wash the other day, and ended up hitting the car in front of me, plus taking out my mirror on one of the car wash swing arms. Neither car was badly damaged... the other car only had a cracked tail light lens. But I felt REALLY stupid.Now that I'm aware of it, I'm trying to be extra careful. As the mom of two young teens (both in schools in other towns that require that they be driven) and with a CPA husband working 70 hours a week at the moment, not driving is NOT an option.> I am also having extreme dizzy and tiredness that happens quickly then > I sleep for 2 to 8 hours at a time. It usually starts with a feeling > in my upper chest that something is tight and fluttery inside, then I > get a headache. The

next thing I know I am so sleepy I can't say awake.> > Anybody else have this problem???Yes, though it doesn't happen so quickly. Usually about 8 hourse after I take it, I sort of "hit the wall", and suddenly get so exhausted I can't stay on my feet. I was also getting flu-like symptoms, where I ached all over, had chills, and was sneezing and had a very runny nose. The Rheumatologist said these are well known side effects. She gave me a prescription for Leucovorin (folinic acid) which I am supposed to take 12 hours after the Mtx to help with side effects. (I also take folic acid daily) I can't really wait 12 hours to take the Leucovorin, because I'd be in a stupor by then. The best schedule I've found for me so far is to take the Mtx around noon time. That usually gives me time to get through the day. Then when I'm beginning to crash, around 8:00, I take the

Leucovorin and go to bed. I usually sleep straight through until 9 or 10 the next morning. (I take it on Friday, so I can sleep Sat. morning) Doing it this way, and with a couple of strong cups of coffee after I DO get up Sat. morning, I'm usually more or less functional for the weekend. I don't think my brain is working well enough that I'd trust myself on serious work, though, so I really have to take it over the weekend. The Leucovorin DEFINITELY makes it better... I get very tired from the Mtx now, but the terrible chills, achiness, and runny nose/sneezing have totally stopped.I haven't been on Mtx that long yet (about 5 weeks, up to 12.5 mg, heading for a target dose of 15 mgs in another 3 weeks) and I'm HOPING that the side effects will wane as my body adjusts to the meds. If not, I'll have to do something different... I can't lose such a huge chunk out of every week long-term if there are any

alternatives. The good news is that I do think it's helping with the RA, and I didn't feel like there was an increase in side effects when I went from 10mg to 12.5.

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rutledgestacey@> wrote:

***I started MTX about 4 weeks ago. Since I went up to a full 10 mgs

(1 Pill) I am having confusion that lasts 2 or 3 days after taking

the pill. I make bad judgements when driving and cannot remember

where I left my car at the store. My husband says I'm " not there. " He

has forbidden me to drive until I can carry on a conversation with him

and prove I can drive with him in the car. ***

replied:

***I have noticed the same, though perhaps not to the same extent you

are experiencing.***

That's for posting about the problems with memory. I've been worried

lately about my bad memory. I've been taking MTX for 2 1/2 years. I'm

currently taking 24 mgs (8 pills) once a week. Now, I just need to

find out if the memory problems are from getting older, MTX, or

Alzheimers (mom had it). :( Oh, and it's not to the extent of the

original poster.

Jean

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My dr. said that the MTX does can cause memory problems and you should probably talk to yours too. They pulled me off of it and put me on Arava. Staceyhookedonpopcorn <hookedonpopcorn@...> wrote: rutledgestacey@> wrote:***I started MTX about 4 weeks ago. Since I went up to a full 10 mgs (1 Pill) I am having confusion that lasts 2 or 3 days after taking the pill. I make bad judgements when driving and cannot remember where I left my car at the store. My husband says I'm "not there." He has forbidden me to drive until I can carry on a conversation with him and prove I can drive with him in the car. *** replied:***I have noticed the same, though perhaps not to the same extent you are experiencing.***That's for posting about the problems with

memory. I've been worried lately about my bad memory. I've been taking MTX for 2 1/2 years. I'm currently taking 24 mgs (8 pills) once a week. Now, I just need to find out if the memory problems are from getting older, MTX, or Alzheimers (mom had it). :( Oh, and it's not to the extent of the original poster.Jean

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