Re: Methotrexate..............Newbie has questions.please help

September 3, 2006

Sadie: I have been on methotrexate for about 3 years now. I still get quite

fatigued and not always real hungry for a day or two after. I have had my dosage

ajusted to more a few times and now am taking 15mg a week. The folic acid will

help with some of the side effects. I don't think that I have ever felt really

great after taking it, but I can tell you that you seem to get some tolerance

towards it after a while. I also take anti-depressants, anti malarial drugs and

infusion meds for my RA, but I can tell you from my experience that RA , by

itself causes great fatigue at times, Just rest when you can and look forward to

the next rest,when you can't. Good wishes, Sheri D.

sadiehstone <sadiehstone@...> wrote: My rheumy just diagnosed me

with RA. She prescribed folic acid &

methotrexate. I took both on Thursday night. Friday morning, I awoke

vomiting & with diarrhea. I couldn't have gotten out of bed on Friday

if my house had been of fire. Same for Saturday. I have never felt

so groggy and sleepy. I slept off & on for two days. (mostly sleeping)

My question is this: Is this what I can expect every time i take

methotrexate?

I am also on meds for bi-polar, anxiety, & depression. All of these

make me sleepy as well.

How does anyone work this way?

Thanks,

Sadie

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September 3, 2006

I had a miserable time with Methotrexate in the beginning too. My

Doc first added a dose of Leucovorin (folinic acid, which is

slightly different than folic acid) 12 hours after I took the Mtx.

That was beter, but I was still toast for 24 hours after the Mtx.

Then she switched me to injectable Mtx. It took a little time to

get over the idea of giving myself a shot once a week, but it's

really not hard, and Mtx doesn't sting like some of the other

injectable meds.

The difference is amazing. I'm now taking twice the dose of Mtx

that was making me so sick in the beginning, and I don't get sick at

all. I'm still worn out the evening of the day I take it, but

considering the fatigue I had just rom the RA earlier, it's not bad

at all.

Now I'm on Enbrel too, so I take 2 shots each week. But over all,

although it's far from perfect, I'm doing much better. From what

I've read and been told, most of the biologics work better if you

are also taking at least some Mtx. The side effects can be awful in

the beginning, but there _are_ ways of reducing the side effects,

and most of the really bothersome ones you have in the beginning do

disipate as time goes on. You still have to have bloodwork done

regularly to watch for more serious side effects, but my

understanding is that those more serious side effects (not that

feeling horrible all the time isn't serious, but you know what I

mean... the ones that can do you serious harm) are reversible if

they are caught early with regular blood work.

I was dx'd with RA in Jan., and although it's a long way from

perfect, at least we've got the meds to a point where I am pretty

funtional most of the time, and the side effects from the meds are

not too bad. My doc is still working on it, but the problem with

all these meds is that it takes a long time to see whether there is

going to be a change for the better, and sometimes the initial side

effects are bad enough that you don't want to wait that long!

Hang in there, and talk to your doc. There are ways of lessening

side effects, and in time, most people do find a mix that does work

pretty well for them.

--- In , " sadiehstone " <sadiehstone@...>

wrote:

>

> My rheumy just diagnosed me with RA. She prescribed folic acid &

> methotrexate. I took both on Thursday night. Friday morning, I

awoke

> vomiting & with diarrhea. I couldn't have gotten out of bed on

Friday

> if my house had been of fire. Same for Saturday. I have never

felt

> so groggy and sleepy. I slept off & on for two days. (mostly

sleeping)

>

> My question is this: Is this what I can expect every time i take

> methotrexate?

>

> I am also on meds for bi-polar, anxiety, & depression. All of

these

> make me sleepy as well.

>

> How does anyone work this way?

>

> Thanks,

> Sadie

>

September 3, 2006

Sadie,

I was like you I had constant vomiting, diarrhea, eye, mouth, throat and

genitalia sores, dizziness, headache, felt really crappy...I slept on the

bathroom floor mostly...it was too much trouble to keep running back and forth.

The last thing I got was drug induced pneumonitis. I tried pills and

injections. For me I was one of those unlucky ones that the side effects never

got

better.

But for some they can not handle MTX at all. I was one of those.

I also had serious foggy and groggy feeling for a 3-4 days after taking MTX.

Most people take at nite..but it did no good for me. I finally stopped it

myself and refused to take anymore since my doc was not helpful when I

complained about side effects. He just gave me more pills to take to try to

counteract the side effects.

Toni

September 3, 2006

-Sherie: Thank you so much for sharing your information with me. I

feel better knowing that I will eventually develop a tolerance for

it. That is comforting.

I'm a little confused as to why my rheumy put me on such aggressive

therapy when she told me that I am in the early stages.

Thanks again for your help. Much support to you also.

Best,

Sadie

-- In , sheri duke <sheriduke@...> wrote:

>

> Sadie: I have been on methotrexate for about 3 years now. I still

get quite fatigued and not always real hungry for a day or two

after. I have had my dosage ajusted to more a few times and now am

taking 15mg a week. The folic acid will help with some of the side

effects. I don't think that I have ever felt really great after

taking it, but I can tell you that you seem to get some tolerance

towards it after a while. I also take anti-depressants, anti

malarial drugs and infusion meds for my RA, but I can tell you from

my experience that RA , by itself causes great fatigue at times,

Just rest when you can and look forward to the next rest,when you

can't. Good wishes, Sheri D.

>

> sadiehstone <sadiehstone@...> wrote: My rheumy just

diagnosed me with RA. She prescribed folic acid &

> methotrexate. I took both on Thursday night. Friday morning, I

awoke

> vomiting & with diarrhea. I couldn't have gotten out of bed on

Friday

> if my house had been of fire. Same for Saturday. I have never felt

> so groggy and sleepy. I slept off & on for two days. (mostly

sleeping)

>

> My question is this: Is this what I can expect every time i take

> methotrexate?

>

> I am also on meds for bi-polar, anxiety, & depression. All of

these

> make me sleepy as well.

>

> How does anyone work this way?

>

> Thanks,

> Sadie

>

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

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

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call rates.

>

September 3, 2006

:

Thanks for your response. It's wonderful to know that such caring

people still exist.

Miserable is the right word for it. I haven't been able to eat

since I took it Thursday night. I sleep all the time.

I hate the idea of a needle, but if it works so much better it might

be worth a try. I'll ask my rheumy. My complete exhaustion has

lasted all weekend. I made myself get up & go to church. When I got

home, I went right back to bed & slept for three hours. And I took

the Methotrexate on Thursday!

My rheumy also told me that I am in the early stages. I wonder why

she thinks such aggressive treatent is necessary.

Again, thanks for your reply. I learned a lot.

Best,

Sadie

- In , " Randall " <krandall@...>

wrote:

>

> I had a miserable time with Methotrexate in the beginning too. My

> Doc first added a dose of Leucovorin (folinic acid, which is

> slightly different than folic acid) 12 hours after I took the

Mtx.

> That was beter, but I was still toast for 24 hours after the Mtx.

> Then she switched me to injectable Mtx. It took a little time to

> get over the idea of giving myself a shot once a week, but it's

> really not hard, and Mtx doesn't sting like some of the other

> injectable meds.

>

> The difference is amazing. I'm now taking twice the dose of Mtx

> that was making me so sick in the beginning, and I don't get sick

at

> all. I'm still worn out the evening of the day I take it, but

> considering the fatigue I had just rom the RA earlier, it's not

bad

> at all.

>

> Now I'm on Enbrel too, so I take 2 shots each week. But over all,

> although it's far from perfect, I'm doing much better. From what

> I've read and been told, most of the biologics work better if you

> are also taking at least some Mtx. The side effects can be awful

in

> the beginning, but there _are_ ways of reducing the side effects,

> and most of the really bothersome ones you have in the beginning

do

> disipate as time goes on. You still have to have bloodwork done

> regularly to watch for more serious side effects, but my

> understanding is that those more serious side effects (not that

> feeling horrible all the time isn't serious, but you know what I

> mean... the ones that can do you serious harm) are reversible if

> they are caught early with regular blood work.

>

> I was dx'd with RA in Jan., and although it's a long way from

> perfect, at least we've got the meds to a point where I am pretty

> funtional most of the time, and the side effects from the meds are

> not too bad. My doc is still working on it, but the problem with

> all these meds is that it takes a long time to see whether there

is

> going to be a change for the better, and sometimes the initial

side

> effects are bad enough that you don't want to wait that long!

>

> Hang in there, and talk to your doc. There are ways of lessening

> side effects, and in time, most people do find a mix that does

work

> pretty well for them.

>

> >

> > My rheumy just diagnosed me with RA. She prescribed folic acid

&

> > methotrexate. I took both on Thursday night. Friday morning, I

> awoke

> > vomiting & with diarrhea. I couldn't have gotten out of bed on

> Friday

> > if my house had been of fire. Same for Saturday. I have never

> felt

> > so groggy and sleepy. I slept off & on for two days. (mostly

> sleeping)

> >

> > My question is this: Is this what I can expect every time i

take

> > methotrexate?

> >

> > I am also on meds for bi-polar, anxiety, & depression. All of

> these

> > make me sleepy as well.

> >

> > How does anyone work this way?

> >

> > Thanks,

> > Sadie

> >

>

September 3, 2006

Be glad thjat your doc is one who believes in aggressive early

treatment. Everything I've read seems to say that is best

practice. A lot of irreversible damage can happen to your joints in

the first year or two of RA, even if you feel pretty good during

that time, without DMARDS. They now know that it is very important

to treat the underlying disease process as soon as possible to

prevent or at lest delay permanent joint damage as much as

possible. Making people more comfortable is just not enough.

My rheumy just

> diagnosed me with RA. She prescribed folic acid &

> > methotrexate. I took both on Thursday night. Friday morning, I

> awoke

> > vomiting & with diarrhea. I couldn't have gotten out of bed on

> Friday

> > if my house had been of fire. Same for Saturday. I have never

felt

> > so groggy and sleepy. I slept off & on for two days. (mostly

> sleeping)

> >

> > My question is this: Is this what I can expect every time i take

> > methotrexate?

> >

> > I am also on meds for bi-polar, anxiety, & depression. All of

> these

> > make me sleepy as well.

> >

> > How does anyone work this way?

> >

> > Thanks,

> > Sadie

> >

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

> > Messenger with Voice. Make PC-to-Phone Calls to the US

(and

> 30+ countries) for 2¢/min or less.

> >

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

> > How low will we go? Check out Messenger's low PC-to-

Phone

> call rates.

> >

September 3, 2006

The thinking these days is to treat RA very aggressively from the

beginning, in order to prevent permanent joint damage. You seem to have

a very good, up-to-date rheumy.

Sue

On Sunday, September 3, 2006, at 05:38 PM, sadiehstone wrote:

>

> I'm a little confused as to why my rheumy put me on such aggressive

> therapy when she told me that I am in the early stages.

September 3, 2006

Sadie,

Welcome to the group!

Not everyone can tolerate methotrexate, but the majority of people who try

it can. There are things your physician can do to improve your chances for

success.

One thing you can do (if you aren't already) is take the MTX by injection

instead of orally. If you bypass the digestive tract, you may experience

less side effects. Your physician can also decide to either increase your

folic acid or prescribe leucovorin (folinic acid) for you.

The reason rheumatologists start out with aggressive therapy is because RA

is a very serious disease with the potential to cause your whole body, not

only your joints, much damage. The idea is to get the inflammation under

control from the start before it spirals out of control.

Think of RA as a smoldering fire at a simple campsite that could, without

the proper dousing, become a forest fire.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: Methotrexate..............Newbie has

questions.please help

-Sherie: Thank you so much for sharing your information with me. I

feel better knowing that I will eventually develop a tolerance for

it. That is comforting.

I'm a little confused as to why my rheumy put me on such aggressive

therapy when she told me that I am in the early stages.

Thanks again for your help. Much support to you also.

Best,

Sadie

September 3, 2006

I was on MTx and Plaquenel for over a year. I slept

all day every time I took my MTX dose. Today I started

Humera (no MTX or Placquenel along with) and again I

practially slept all day. For some reason it really

hits my system..yet Placquenl did not make me

sleep..just sicker than a dog!! I used to take the MTX

at night to prevent the sleeping the day away! Then I

knew that even with fibro...at least one night a week

I got a good nights sleep! Ya gotta take it where and

when you can get it!! today with the Humera I was like

a narcaleptic...everytime I turned around I was

sleping...when sitting, standing,or laying down..it

didn't matter...just leave me alone for 5 minutes of

quiet and I was out light a light!!! ANd man does that

stuff burn!!! OW !!!!.........jenna

__________________________________________________

September 4, 2006

Sadie

I've been on Methotrexate for a month now. While I didn't get as sick

to my stomach I did get really sleepy with it. I'm also on meds for

bi-polar and except for my seroquil they never make me sleepy so if I

can see that if psych meds make you sleepy methotrexate is going to be

even worse. The good thing is that The effects have been less intense

every time I've taken the medication. My doctor did tell me that I

could get nausia from the methotrexate and I know my mom did when she

first started taking it. I think you said that you took both the

Folic Acid and the Methotrexate on the same day. My rheumy was very

adamit that I take them at least three days apart. I really didn't

understand why, but you might want to ask yours. I can tell you that

the side effects can lessen I've seen it in myself and my mom and I

know that if the methotrexate is really helping but the side effects

are really strong there are meds for the side effect, and a few other

medications related to methotexate that just aren't as widely used.

P.S.

As someone with both RA and bi-polar who has aslo been recently

diagnosed I would be interested in sharing the strugle that we're

going through. I know that I feel very lost and uncertain about

everything right now, and I'd like to be able to talk to someone who's

in a similar place.

>

> My rheumy just diagnosed me with RA. She prescribed folic acid &

> methotrexate. I took both on Thursday night. Friday morning, I awoke

> vomiting & with diarrhea. I couldn't have gotten out of bed on Friday

> if my house had been of fire. Same for Saturday. I have never felt

> so groggy and sleepy. I slept off & on for two days. (mostly sleeping)

>

> My question is this: Is this what I can expect every time i take

> methotrexate?

>

> I am also on meds for bi-polar, anxiety, & depression. All of these

> make me sleepy as well.

>

> How does anyone work this way?

>

> Thanks,

> Sadie

>

September 4, 2006

Sadie,

Oral mtx gave me terrible cramping and diarrhea. I kept

taking it for 3 months hoping I would get used to it, but

I never did. I was prescribed the injections of mtx and it

hasn't upset my stomach at all, no diarrhea either.

I'm more fatigued the day after taking it, but other than that

I have no side effects.

a

On Sep 3, 2006, at 1:57 PM, sadiehstone wrote:

> My rheumy just diagnosed me with RA. She prescribed folic acid &

> methotrexate. I took both on Thursday night. Friday morning, I awoke

> vomiting & with diarrhea. I couldn't have gotten out of bed on Friday

> if my house had been of fire. Same for Saturday. I have never felt

> so groggy and sleepy. I slept off & on for two days. (mostly sleeping)

>

> My question is this: Is this what I can expect every time i take

> methotrexate?

>

> I am also on meds for bi-polar, anxiety, & depression. All of these

> make me sleepy as well.

>

> How does anyone work this way?

>

> Thanks,

> Sadie

>

September 4, 2006

Sadie,

I was told to take the Folic acid every day EXCEPT the

MTX day when I was on it. Every DR is different in how

they use it. The Nausea and vomiting snuck up on me

with MTX...first it was about every 6 weeks I spent a

week on the bathroom floor too sick to move..after a

few months it started to be an everyday affair! I

didn't even have a good day to clean the bathroom. I

had a great friend who did it as I was spending much

of my time on the floor in there!! For those new to

MTX...do not tolerate this for long...if it doesn't

stop refuse to take it anymore..they will change you

to something else...that you tolerate better....there

is not much quality of life if you are spending all

your time on the bathroom floor!!!...jenna

When you lose a loved one, you gain an angel whos' name you know !

__________________________________________________

September 4, 2006

Let me add folic acid does not work for everyone. I was up to 5mg of folic

acid a day plus leucovorin on my dose day with 15mg MTX injectable dose a

week...none of it helped.

Just be real proactive. You know your body!!!!

I did not listen to me and allow this doc to keep me on meds that were way

to strong and toxic to my body. When I can to my senses. I fired that doc

and stopped the meds...then moved on to a new doc.

Toni

September 7, 2006

:

Thanks for your reply! That answers my question re/aggressive

treatment. I am thankful because I really do have a good rheumy. I

know she know best; but...ugh! I dread taking the MTX.

Thanks again!

My rheumy just

> > diagnosed me with RA. She prescribed folic acid &

> > > methotrexate. I took both on Thursday night. Friday morning, I

> > awoke

> > > vomiting & with diarrhea. I couldn't have gotten out of bed on

> > Friday

> > > if my house had been of fire. Same for Saturday. I have never

> felt

> > > so groggy and sleepy. I slept off & on for two days. (mostly

> > sleeping)

> > >

> > > My question is this: Is this what I can expect every time i

take

> > > methotrexate?

> > >

> > > I am also on meds for bi-polar, anxiety, & depression. All of

> > these

> > > make me sleepy as well.

> > >

> > > How does anyone work this way?

> > >

> > > Thanks,

> > > Sadie

> > >

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

> > > Messenger with Voice. Make PC-to-Phone Calls to the US

> (and

> > 30+ countries) for 2¢/min or less.

> > >

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

> > > How low will we go? Check out Messenger's low PC-to-

> Phone

> > call rates.

> > >

September 7, 2006

Hi Sadie,

I had a lot of trouble with the Mtx in the beginning, particularly

before I switched to the injectable form. But I have to say, it

really doesn't bother me much any more. I'm a little more tired the

day after I take it, but RA itself causes fatigue too. Over all,

I'm much LESS fatigued than before I started on the meds I'm on

now.

Prednisone helped a lot with the pain, swelling and stiffness, but

it didn't do much for the fatigue for me... By mid-afternoon every

day, I was dropping in my tracks. My younger son goes to a charter

school in another town, and we carpool with other families. I was

scared to death on the days I had to frive in the afternoon, because

I was so tired, I was afraid I might fall asleep driving the car. I

still often need to take a nap in the afternoon, but I don't often

have that overwhelming bone-wearying fatigue I had in the beginning.

I was really afraid of Mtx in the beginning too. But I've read a

lot about it (and about RA!) since then, and it really is one of the

safer RA drugs, and it is effective for a lot of people. The way I

see it is that it's a whole less dangerous than the RA is without

treatment!

Good luck in finding drugs that work well for you!

My rheumy just

> > > diagnosed me with RA. She prescribed folic acid &

> > > > methotrexate. I took both on Thursday night. Friday morning,

I

> > > awoke

> > > > vomiting & with diarrhea. I couldn't have gotten out of bed

on

> > > Friday

> > > > if my house had been of fire. Same for Saturday. I have

never

> > felt

> > > > so groggy and sleepy. I slept off & on for two days. (mostly

> > > sleeping)

> > > >

> > > > My question is this: Is this what I can expect every time i

> take

> > > > methotrexate?

> > > >

> > > > I am also on meds for bi-polar, anxiety, & depression. All

of

> > > these

> > > > make me sleepy as well.

> > > >

> > > > How does anyone work this way?

> > > >

> > > > Thanks,

> > > > Sadie

> > > >

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

> > > > Messenger with Voice. Make PC-to-Phone Calls to the

US

> > (and

> > > 30+ countries) for 2¢/min or less.

> > > >

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

> > > > How low will we go? Check out Messenger's low PC-to-

> > Phone

> > > call rates.

> > > >

September 7, 2006