Re: MTX - I'm afraid!!

[Guest guest]

Hi ,

Yes MTX can be an overwhelming medication to many people. However, it is the

most commonly used, successful drug in the treatment of RA. Everyone reacts

to it differently. It can take 4 to 6 weeks to start to work, but once it

does, you will see a difference! I personally did not have any stomach issues

with it, but just in case, I ate some saltines with it. I got a headache the

first time, but then nothing else. As my dosage increased, I got what I

call " the fuzzies " . It's not painful, didn't stop me from functioning, it's

more like a brain fog more than anything. My Rheumy has me on 1mg of Folic Acid

a day, including the day I take my MTX. Some rheumys differ with that, just

follow what yours advises. I'm up to 8 pills every Thursday. This Rheumy

suggested I start taking Robitussin (non-drowsy, mostly guaffinessin) 1 hour

before I begin taking my pills. This will cut down on the foggy, fuzzy

feeling. It has helped me. Again, what works for me, may not work for

everyone

else. All we can do is share information and hope we help someone else.

Usually they'll start you on a small dose and slowly increase it depending

on your progress and feedback. Give it a chance. It really works! Best of

luck to you. Please keep us posted and let us know how you are doing.

Heidi in Mass.

In a message dated 11/14/2008 9:57:19 P.M. Eastern Standard Time,

keptoz@... writes:

My Rheumy wants to start me on MTX. So far, I have had stomach probs

with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

relief), I had an allergic reaction to Plaquenil (my tongue swelled &

I had a rash on my face & neck) & Sulfasalazine made me feel even

worse (constant non stop flare the entire 2 months I was on it). So

she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

believe how good I feel! But, she only wanted it to be a bridge to the

next drug - MTX.

But I'm afraid - I've heard so many bad things about it. My Dr. said

that sometimes on the day you take it (orally) & the next you are flu

like sick. I have 3 kids (one is a toddler) & I just can't fathom being

sick two days a week - it almost doesn't seem worth the pain relief.

I remember some posts here about folic acid & also a discussion about

pills vs. injection, but I can't seem to find them.

She is sending me some literature to look at so I can have questions

when we meet for my appointment on Wed (the 19th). Any advice or

questions I should bring with me? I hate that we all have to take all

these scary drugs!!

Thanks!

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[Guest guest]

I have three kids and am on Methotrexate have been almost a year. Heidi on

the list

helped me a lot when i first started i was so afraid. I do take my

methotrexate on Sunday night

so that on Monday when they are in school i can rest. At first i was really

tired, now

its been a while im not so tired. I take folic acid with it as well. If

you need any

help let me know id be glad to get you thorugh.

Jolene

In a message dated 11/14/2008 9:57:23 P.M. Eastern Standard Time,

keptoz@... writes:

My Rheumy wants to start me on MTX. So far, I have had stomach probs

with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

relief), I had an allergic reaction to Plaquenil (my tongue swelled &

I had a rash on my face & neck) & Sulfasalazine made me feel even

worse (constant non stop flare the entire 2 months I was on it). So

she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

believe how good I feel! But, she only wanted it to be a bridge to the

next drug - MTX.

But I'm afraid - I've heard so many bad things about it. My Dr. said

that sometimes on the day you take it (orally) & the next you are flu

like sick. I have 3 kids (one is a toddler) & I just can't fathom being

sick two days a week - it almost doesn't seem worth the pain relief.

I remember some posts here about folic acid & also a discussion about

pills vs. injection, but I can't seem to find them.

She is sending me some literature to look at so I can have questions

when we meet for my appointment on Wed (the 19th). Any advice or

questions I should bring with me? I hate that we all have to take all

these scary drugs!!

Thanks!

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[Guest guest]

In a message dated 11/14/2008 8:57:15 P.M. Central Standard Time,

keptoz@... writes:

I just can't fathom being

sick two days a week - it almost doesn't seem worth the pain relief.>

But MTX doesn't just stop the pain -- it stops the progression of the

disease. It's really important to me to drink lots of water the day before I

take

it and the day I take it. That seems to knock down my side-effects.

dd

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[Guest guest]

My Rheumy has me on the eight mtx per week with folic acid. He has told me that

you take the folic acid every day but wait until much later in the day to take

it the day of the mtx. Also backed up by the pharmatist.

Dave

[Guest guest]

,

Like the other two that answered, I've been on MTX for over a year

now... They started me off slow and I have been taking six pill once a

week. I was taking them every Monday morning, but found it hard to

function being that it made me so tired and foggy. Thats when a few

people from this list suggested that I take them at night! Wow, what

a difference. During the time that the mtx would make me foggy and

tired I'm now asleep, and it even helps me to stay asleep so that I'm

bright eyed and bushy tailed in the morning. Now that my medications

are being switched around again, My doc wants me to take 25mlg of

liquid put in my orange juice using a syringe... Sounds strange, but

my doc says it will help my body to absorb it better and possibly less

side effects so that the increased dose doesn't make me tired/fogged

all over again. I also take one mlg of folic acid to conteract the

harmful side effects of the mtx.

karen, I personally found the side effects of the steroids to be alot

worse then being on the mtx... I have hair where I don't want it and

never had it before, as well as loosing the hair I wanted to keep, not

to mention the 30lbs that I gained in a year... Of course lack of

exercise was a contributer, but I was hardly eating either... Doc said

it was a combo of no exercise and steroid... I'm still trying to get

off the steroids, but my joints aren't cooperating...

Best of luck to you... the only words of advice I can think of, is too

give a try for a few weeks before giving it up... Sometimes the side

effects go away or lessen wants your body becomes accustomed to

them... At least that is how it worked for me using mtx, planqunile

and enbrel.

Hope everything works out

> My Rheumy wants to start me on MTX. So far, I have had stomach probs

> with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

> relief), I had an allergic reaction to Plaquenil (my tongue swelled &

> I had a rash on my face & neck) & Sulfasalazine made me feel even

> worse (constant non stop flare the entire 2 months I was on it). So

> she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

> believe how good I feel! But, she only wanted it to be a bridge to the

> next drug - MTX.

>

> But I'm afraid - I've heard so many bad things about it. My Dr. said

> that sometimes on the day you take it (orally) & the next you are flu

> like sick. I have 3 kids (one is a toddler) & I just can't fathom being

> sick two days a week - it almost doesn't seem worth the pain relief.

>

> I remember some posts here about folic acid & also a discussion about

> pills vs. injection, but I can't seem to find them.

>

> She is sending me some literature to look at so I can have questions

> when we meet for my appointment on Wed (the 19th). Any advice or

> questions I should bring with me? I hate that we all have to take all

> these scary drugs!!

>

> Thanks!

>

>

>

[Guest guest]

Hi - I used to take the MTX pills, but have been on the

injections for the past 3 weeks. I think the injections are much more

effective as I've been doing not too bad. Aside from feeling a little

sleepy on the day of and the day after injections, that's the only

side effects that I've had - but everyone is different. I am also on

prednisone, started out at 10mg and now week 2 of 7.5mg, trying to

wean myself off of it - although my Rheumy wanted me to take it until

December.

Anyway, I digress. I also take 1mg of Folic Acid every day EXCEPT the

day of the MTX and Sulfasalazine 1000mg twice daily. It is scary when

I actually " think " about all the meds I have to take, but the

alternative (major pain) keeps me trying. Take care and keep us

posted. Whatever you decide, I pray you get relief........Doreen

>

> My Rheumy wants to start me on MTX. So far, I have had stomach probs

> with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

> relief), I had an allergic reaction to Plaquenil (my tongue swelled

> & I had a rash on my face & neck) & Sulfasalazine made me feel even

> worse (constant non stop flare the entire 2 months I was on it). So

> she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

> believe how good I feel! But, she only wanted it to be a bridge to

> the next drug - MTX.

>

> But I'm afraid - I've heard so many bad things about it. My Dr. said

> that sometimes on the day you take it (orally) & the next you are

> flu like sick. I have 3 kids (one is a toddler) & I just can't

> fathom being sick two days a week - it almost doesn't seem worth

> the pain relief.

>

> I remember some posts here about folic acid & also a discussion

> about pills vs. injection, but I can't seem to find them.

>

> She is sending me some literature to look at so I can have questions

> when we meet for my appointment on Wed (the 19th). Any advice or

> questions I should bring with me? I hate that we all have to take

> all these scary drugs!!

>

> Thanks!

>

>

>

[Guest guest]

Hi -

Our histories sound very similar. I had to stop NSAIDS because of my stomach,

sulfasalazine due to allergic reaction, arava due to a massive allergic

reaction. Right now my rheumy and I are treating with corticosteroid shots evert

three months and pred for extreme periods of flare.

My first rheumy tried mtx pills. To be honest, they did not work for me. My

fogginess was terrible and lasted 2-3 days, and I am a professor so that didn't

work. Then I started vomiting, and after 8 weeks was worse, not better.

Now, none of that should stop you from trying it. Most of the ra folks I know

use mtx and have for years with no problem. Of everything prescribed for ra

these days, it is one of the safest and most tested. I am likely to be starting

mtx shots in January, since my doc and I just got through with a failed attempt

at minocycline. We think my problems with the pills were a combo of my stomach

problems and diabetes, so I'm hopeful that shots will be more effective, since

my weight gain on steroids is troubling.

My advice when you start pills is to take them on a day when ypu can rest the

next day, I usually took mine on a Friday night with a slice of toast. Stay out

of bright sunlight when you're taking mtx, it is contra-indicated, and drink

plenty of water. Good luckn and keep us posted. I'll let everyone know how the

shots go.

Amber inMissouri

>

> My Rheumy wants to start me on MTX. So far, I have had stomach probs

> with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

> relief), I had an allergic reaction to Plaquenil (my tongue swelled &

> I had a rash on my face & neck) & Sulfasalazine made me feel even

> worse (constant non stop flare the entire 2 months I was on it). So

> she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

> believe how good I feel! But, she only wanted it to be a bridge to the

> next drug - MTX.

>

> But I'm afraid - I've heard so many bad things about it. My Dr. said

> that sometimes on the day you take it (orally) & the next you are flu

> like sick. I have 3 kids (one is a toddler) & I just can't fathom being

> sick two days a week - it almost doesn't seem worth the pain relief.

>

> I remember some posts here about folic acid & also a discussion about

> pills vs. injection, but I can't seem to find them.

>

> She is sending me some literature to look at so I can have questions

> when we meet for my appointment on Wed (the 19th). Any advice or

> questions I should bring with me? I hate that we all have to take all

> these scary drugs!!

>

> Thanks!

>

>

>

[Guest guest]

Hello ,

I was afraid to take MTX too, but it really is a life saver for me, along with

Humira. I too have stomach problems on NSAIDs, so they aren't an option for me.

If I do take them, I have to take Prevacid along with them to help out my

stomach. I was on plaquenil for almost a year, but it didn't do anything for

me. I got intense stomach pains from Sulfasalazine, and only lasted 2-3 days on

that one.

I do feel sick after taking MTX. Nausea, headache, fatigue and occasional

diarrhea are my main concerns. I take it right before I go to bed and sleep

through the worst of it. But that being the case, we tried lowering the dose

because I do have stomach issues (gastroparesis) and I was doing well (as far as

the RA goes). Well, a week and a half later I got all my symptoms back. So now

I'm having the worst flare since going on Humira (which I'm on over a year now).

I'm shocked by how quickly my body reverted and I now have a much better

appreciation for the MTX.

I'd say give it a shot. It may work out for you. I have to take 2mg of Folic

Acid daily while on the MTX which is really no big deal. While the prednisone

is working for you, it's still something that does have side effects as well.

Whatever you choose, I wish you luck and hope that you find something that will

get you into remission.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

Oh , I also forgot to mention that I have 2 young children as well, so I

know how hard it is taking care of little ones with no relief. RA started for

me when my youngest was 3. The side effects from the MTX are nothing compared

to the pain. I found that I can function much better with the headache and

nausea than with the debilitating pain. When you care for little kids, you have

to always be doing something for them, and I've found that I can do it better

feeling ill rather than not being able to open things or pick them up.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

Hi ,

I was on MTX for a long time, I took it once a week but every time I took

it, I would wait 4 days then be sick with nausea and diarrhea. It did hlp my

RA pain as I can feel the difference when I am off it. But it got to the

point that I was sick for the whole 4 days. That happened slowly over a few

months. I don't take it now as it was just not worth it. I would rather hurt

that be sick. It has done some wonderful thing for a lot of the people that

I know who also use it. So the best way is to try it and see what it does.

It may work great for you. I still take Humera and it doesn't make me sick

at all.

Heidi M

On Fri, Nov 14, 2008 at 8:42 PM, keptoz <keptoz@...> wrote:

> My Rheumy wants to start me on MTX. So far, I have had stomach probs

> with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

> relief), I had an allergic reaction to Plaquenil (my tongue swelled &

> I had a rash on my face & neck) & Sulfasalazine made me feel even

> worse (constant non stop flare the entire 2 months I was on it). So

> she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

> believe how good I feel! But, she only wanted it to be a bridge to the

> next drug - MTX.

>

> But I'm afraid - I've heard so many bad things about it. My Dr. said

> that sometimes on the day you take it (orally) & the next you are flu

> like sick. I have 3 kids (one is a toddler) & I just can't fathom being

> sick two days a week - it almost doesn't seem worth the pain relief.

>

> I remember some posts here about folic acid & also a discussion about

> pills vs. injection, but I can't seem to find them.

>

> She is sending me some literature to look at so I can have questions

> when we meet for my appointment on Wed (the 19th). Any advice or

> questions I should bring with me? I hate that we all have to take all

> these scary drugs!!

>

> Thanks!

>

>

>

>

>

[Guest guest]

hi i've been on mtx 10 mg injected 4 weeks now and have been very tired

- sleep 12-16 h a day!!! but worse than that i've been so dizzy and

nauseous on it. have spent most days in bed or on couch. is this likely

to go away with time? i called my rheumy and he told me to stop it for 2

wks and if dizzy nausea goes away we will then try another drug.

duhh...it started after 5 days on mtx so of course it's the mtx. anyway

he wants me to try sulfasalazine cyclosporine gold before he will let me

try biologics. but when i saw him last in the spring he said if i failed

mtx enbrel woudl be next. i though they didn't even use gold anymore as

it's too dangerous. it was so hard for me to be able to take mtx - took

my yrs to be willing to try it as was so scared of side effects. no way

i want to try gold. i'd rather take a biologic. any advice?

thanks

monique

[Guest guest]

Hi :

Sorry the MTX has made you sick. That's what it did to me, so I started

to do the MTX as self injections. Much easier on my system, and no more

nausea....... thank God. I have been doing the injections for almost 4

years now.

I hope you feel better soon, and maybe, you might consider doing the

injections.

Wishing you pain free days.

Hugs,

Barbara

--- In , Sauve <moniquesauve@...>

wrote:

>

> hi i've been on mtx 10 mg injected 4 weeks now and have been very

tired

> - sleep 12-16 h a day!!! but worse than that i've been so dizzy and

> nauseous on it. have spent most days in bed or on couch. is this

likely

> to go away with time? i called my rheumy and he told me to stop it for

2

> wks and if dizzy nausea goes away we will then try another drug.

> duhh...it started after 5 days on mtx so of course it's the mtx.

anyway

> he wants me to try sulfasalazine cyclosporine gold before he will let

me

> try biologics. but when i saw him last in the spring he said if i

failed

> mtx enbrel woudl be next. i though they didn't even use gold anymore

as

> it's too dangerous. it was so hard for me to be able to take mtx -

took

> my yrs to be willing to try it as was so scared of side effects. no

way

> i want to try gold. i'd rather take a biologic. any advice?

>

> thanks

> monique

>

[Guest guest]

hi barbara

i AM doing injections. never took pills.

monique

> >

> > hi i've been on mtx 10 mg injected 4 weeks now and have been very

> tired

> > - sleep 12-16 h a day!!! but worse than that i've been so dizzy and

> > nauseous on it. have spent most days in bed or on couch. is this

> likely

> > to go away with time? i called my rheumy and he told me to stop it for

> 2

> > wks and if dizzy nausea goes away we will then try another drug.

> > duhh...it started after 5 days on mtx so of course it's the mtx.

> anyway

> > he wants me to try sulfasalazine cyclosporine gold before he will let

> me

> > try biologics. but when i saw him last in the spring he said if i

> failed

> > mtx enbrel woudl be next. i though they didn't even use gold anymore

> as

> > it's too dangerous. it was so hard for me to be able to take mtx -

> took

> > my yrs to be willing to try it as was so scared of side effects. no

> way

> > i want to try gold. i'd rather take a biologic. any advice?

> >

> > thanks

> > monique

> >

>

[Guest guest]

,

I too am afraid to even start MTX let alone ANY DMARD. I had a

really bad week last week and almost caved in, but I had also eaten a

lot of candy from Halloween and forbidden foods (peppers, potatoes).

It took me about four days to get back to " normal " . But unlike you,

I have had no problems yet with NSAIDs, as long as I take them with a

meal. I've found that taking hot milk and honey at night with my

supplements and ibuprofen really helps me sleep as well as smoothing

things out for the following morning. Not sure why, but anything to

help, right?

Have you tried any natural or alternative methods? I'm still on the

search for something good - DMARDs are my very last resort.

Brad

>

> My Rheumy wants to start me on MTX. So far, I have had stomach probs

> with all NSAIDs except Naprolen (wh/ didn't give me a whole lot of

> relief), I had an allergic reaction to Plaquenil (my tongue swelled

&

> I had a rash on my face & neck) & Sulfasalazine made me feel even

> worse (constant non stop flare the entire 2 months I was on it). So

> she put me on 10mg of Prednisone daily & I am in HEAVEN! I can't

> believe how good I feel! But, she only wanted it to be a bridge to

the

> next drug - MTX.

>

> But I'm afraid - I've heard so many bad things about it. My Dr. said

> that sometimes on the day you take it (orally) & the next you are

flu

> like sick. I have 3 kids (one is a toddler) & I just can't fathom

being

> sick two days a week - it almost doesn't seem worth the pain relief.

>

> I remember some posts here about folic acid & also a discussion

about

> pills vs. injection, but I can't seem to find them.

>

> She is sending me some literature to look at so I can have questions

> when we meet for my appointment on Wed (the 19th). Any advice or

> questions I should bring with me? I hate that we all have to take

all

> these scary drugs!!

>

> Thanks!

>

>

>

[Guest guest]

Hi Jere:

Same for me too.

Hugs,

Barbara

>

> I guess I'm in the minority here but I take MTX and Plaquenil and I've

never had any trouble with either.

>

> Jere

> Male, 66

>

>