Methotrexate - I'm so scared!

[Guest guest]

Hi, I am new to this group but it seems really popular so I hope you can help me

with

advice and/or support. I was diagnosed with RA in September last year when I was

four months pregnant. I went on prednisone because that was the only thing safe

enough to use during pregnancy and after the birth while I breastfed my

daughter.

She is now five months old and is bottlefed. I have had some bad side effects

from the

prednisone in the past month so I will be seeing my rheumatologist to change

medication. Obviously I will have to wean off the prednisone, but from our

previous

discussions, he wants to put me on methotrexate. I have been doing research on

the

net about this drug and now I'm terrified - the side effects sound just as bad

(if not

worse) than prednisone! Is methotrexate worse than prednisone? Or will it give

me a

pain-free life? Do most people have injections or take it orally? Are there

alternatives so that I don't have some powerful drug in my body? How will it

effect my

chances of having another baby in the future (since it effects DNA)? I am so

scared I

will react badly to this new medication that I'd rather have painful joints...

sounds

dumb I know, but I've already had bad reactions to the prednisone that scared

me.

Thanks for your advice.

[Guest guest]

Hi ,

I can certainly relate to being scared about RA _and_ all the

different drugs. I was dx'd in January, and we're still trying to

find the right combination of drugs to keep my RA under reasonable

control. I can't tell you anything about the safety of different

drugs in terms of child bearing, as I am past that stage in life...

my kids are 15 & 13 now. But I can talk a little bit about

Methotrexate.

It's really REALLY important to get on some kind of drug that will

actually alter the course of RA, rather than just relieve the

symptoms. Prednisone makes you feel better, but besides the fact

that it can have many really bad long-term side effects, it also

doen't slow the progression of permanent joint damage. For that,

you need a " DMARD " . ( " disease modifying anti-rheumetic drug " )

Even though Methotrexate has a number of possible, scary, side

effects it is sort of the " gold standard " in that it has LESS side

effects than many of the others, and works very well for many

people. Even if it doesn't work well enough by itself (it doesn't

for me) it seems to increase the effectiveness of most of the other

RA drugs.

The side effects fall into two categories, the less " serious " ones,

that can make you absolutely miserable, and the ones that can be

life-threatening. If your rheumatologist is following you

carefully, and you are getting your bloodwork done regularly, they

can pull you off the Mtx if there are any signs of the really

serious side effects. With the less dangerous, every-day side

effects, you will know right away whether you are going to have

them, and then you will have to decide whether they are tolerable or

not.<g>

There are a number of things that can be done to alleviate some of

the less dangerous but troublesome side effects, and the good news

is that if the side efffects _are_ intolerable, they go away

relatively quickly when you stop taking the Mtx. You will probably

be given folic acid to take daily while you are taking Mtx, and this

prevents or at least helps with many of the side effects.

In my case, when I was on oral Mtx (which is probably the more

common way to take it) it made me very sick, with flu-like symptoms

that put me in bed for 2 days after taking it each week. At that

point, the rheumatologist had me start taking Leucovorin (folinic

acid, which is like a really strong version of folic acid) 12 hours

after taking the Mtx. That kept me from getting so sick, but I was

still pretty tired out the day after I took the Mtx.

Finally I switched to injectable Mtx. I was pretty nervous about

the idea of giving myself shots, but once you get over

the " ickiness " of it, it's really not a big deal. Think about it...

diabetics give themselves shots every day! For me, this made all

the difference in the world. Where I had to plan my life around the

fact that I'd be a basket case for 24 hours after I took the oral

Mtx, now the worst that happens is that I tend to want to go to bed

a little earlier that night.

The Mtx alone is not enough to control my RA, and I am currently

taking Enbrel as well, and crossing my fingers that this will be the

answer. I was on Arava with the Mtx for a while, which was working

really well. But the Arava (BTW, Arava is DEFFINITELY not OK for

people who want to become pregnant) started to affect my liver, and

I had to come off. (this was determined by blood tests, and I was

taken off it before any permanent damage could be done) I've only

been on the Enbrel for a couple of weeks, (I take my 3rd shot

tomorrow) and I _think_ I'm starting to see an improvement.

The important thing to remembe is that RA is a nasty disease, and

unless you treat it aggressively, it can lead to permanent deformity

and disability. You don't want that to happen with little ones to

raise! Yes, RA dugs can have bad side effects, but so can ANY

drugs, even Tylenol. If you get your bloodwork done regularly, and

follow up with your rheumatologist when you should, you can catch

problems before they get out of hand.

I know there are a number of women on this board that are of child

bearing age, and have had experiences with a number of different RA

drugs. Hopefully some of them will chime in on that aspect of

things. But in the mean time, try to get yourself onto a DMARD that

works for you, and get off that prednisone if you can. It may be

safe for your baby, but long-term, it's not safe for you!

>

> Hi, I am new to this group but it seems really popular so I hope

you can help me with

> advice and/or support. I was diagnosed with RA in September last

year when I was

> four months pregnant. I went on prednisone because that was the

only thing safe

> enough to use during pregnancy and after the birth while I

breastfed my daughter.

> She is now five months old and is bottlefed. I have had some bad

side effects from the

> prednisone in the past month so I will be seeing my rheumatologist

to change

> medication. Obviously I will have to wean off the prednisone, but

from our previous

> discussions, he wants to put me on methotrexate. I have been doing

research on the

> net about this drug and now I'm terrified - the side effects sound

just as bad (if not

> worse) than prednisone! Is methotrexate worse than prednisone? Or

will it give me a

> pain-free life? Do most people have injections or take it orally?

Are there

> alternatives so that I don't have some powerful drug in my body?

How will it effect my

> chances of having another baby in the future (since it effects

DNA)? I am so scared I

> will react badly to this new medication that I'd rather have

painful joints... sounds

> dumb I know, but I've already had bad reactions to the prednisone

that scared me.

> Thanks for your advice.

>

[Guest guest]

Is methotrexate worse than prednisone? Or will it give me a

> pain-free life? Do most people have injections or take it orally?

Are there

> alternatives so that I don't have some powerful drug in my body? How

will it effect my

> chances of having another baby in the future (since it effects DNA)?

I am so scared I

> will react badly to this new medication that I'd rather have painful

joints... sounds

> dumb I know, but I've already had bad reactions to the prednisone

that scared me.

> Thanks for your advice.

>

--

provided an excellent, detailed post regarding MTX and possible

side effects.

I just wanted to add a little about my personal experience.

I first went to see a rheuamtologist in September of last year. He

put me on MTX in November. He started me on 10 mg/week (4 pills). He

also prescribed 10mg of Lecouvorin for me to take at the same time as

I take my MTX. Lecouvorin is Folinic Acid. It's fairly important to

either take Folic Acid supplements daily or Lecouvorin weekly when on MTX.

The first time I took my pills--I remember just staring at them for a

long time before I got up the nerve to finally take them. Like you,

I'd read a lot of information about the awful side effects of MTX.

But, I finally took my pills--and boy am I glad I did!! I haven't had

any noticable side effects--not even fatigue the next day. I take my

pills Friday about an hour or two before I go to bed.

I'm now up to 15 mg/week (6 pills)--and it really is helping me a lot.

The only other medication I'm taking is Trilisate--which is similar

to aspirin.

I'm not back to 100%--I'd put myself at about 85-90%. As of May, I

started back to going to the gym three or four times a week. I'm

relatively pain free now--although my ankles do let me know when I've

been to active! Also, I still can't make a completely closed fist

with either of my hands. (I can make " little o's " with my hands

now...this time last year I could only make " big c's " .)

I do get lab work done every two months--and so far everything is

completely normal. Even my ESR rate is in the normal range.--I find

this a little odd, because I can still see swelling in my ankles and

fingers.

Anyway--I hope this helps!! Good luck with your decision.

dordale

[Guest guest]

Hi :

Excellent post! I would only add to Sharron that I

also take Mtx, and along with the Folic Acid, I have

added Milk Thistle (OTC herbal) for further liver

protection. My liver enzymes have always been good,

except for one slight elevation that came right down

once I stopped eating ice cream every night! Aha!

Fatty Liver is my problem!

I am so happy to hear that you believe you are

beginning to feel some benefit from the Enbrel! I am

keeping my fingers crossed for you and prayers coming

that this will be THE medication for you! Keep on

riding, my friend!

Kathe in CA

--- Randall <krandall@...> wrote:

>

__________________________________________________

[Guest guest]

Welcome to the group. I hope it gives you some knowledge and helps find

friends that hang around here.

I'm sorry you have had bad side effects from the Prednisone. Might I ask

what they were? I've been taking it for more than 16 years and it's been a

savior from most pain for me.

I've been taking MTX almost as long as the Pred, in pill form and liquid

that I drank and now am injecting. I've had no problems with it, either.

And, no, it won't give you a 'pain-free life' but it can help greatly. It

seems that the newer meds are problems for me, I think it's because they are

too 'target specific', and forget about the rest of the body. That's my

observation.

I've also noticed that folks use the word " scared " a lot when it's probably

more of a " concern " or something less dramatic. Most of the side-effects

listed usually occur during trials but really have nothing to do with the

medicine. I was in a trial for a new pneumonia med, and had to report every

little thing I noticed. An itch here, a sore muscle there, nausea (probably

from eating hospital food), etc. These happenings are added to the list of

side effects although they may have nothing to do with reality. Also, every

case is different. I've been having a lot of fatigue the last 2 months, but

it's been very hot and I've had a few flares, and some of my meds can cause

it. I will say that of the long list of 'allergic' drugs, none have been

permanent. They went away after discontinuing that drug.

You can certainly have concerns and a fear of starting a new drug, but try

not to use or think of the word " scared " . That in itself will almost

guarantee failure because you're already programmed to be " scared " .

Lots of luck and wishing you no side effects,

Dennis in Eastexas

" You can't always fix it with money "

[ ] Methotrexate - I'm so scared!

> Hi, I am new to this group but it seems really popular so I hope you can

> help me with

> advice and/or support. I was diagnosed with RA in September last year when

> I was

> four months pregnant. I went on prednisone because that was the only thing

> safe

> enough to use during pregnancy and after the birth while I breastfed my

> daughter.

> She is now five months old and is bottlefed. I have had some bad side

> effects from the

> prednisone in the past month so I will be seeing my rheumatologist to

> change

> medication. Obviously I will have to wean off the prednisone, but from our

> previous

> discussions, he wants to put me on methotrexate. I have been doing

> research on the

> net about this drug and now I'm terrified - the side effects sound just as

> bad (if not

> worse) than prednisone! Is methotrexate worse than prednisone? Or will it

> give me a

> pain-free life? Do most people have injections or take it orally? Are

> there

> alternatives so that I don't have some powerful drug in my body? How will

> it effect my

> chances of having another baby in the future (since it effects DNA)? I am

> so scared I

> will react badly to this new medication that I'd rather have painful

> joints... sounds

> dumb I know, but I've already had bad reactions to the prednisone that

> scared me.

> Thanks for your advice.

[Guest guest]

--- <sjl26@...> wrote:

Hi :

Welcome to the group - glad you are here with us, but

sorry for the reason you are. This is a wonderful

place to come for friendship, compassion, support and

information. We truly do understand what you are

going through.

wrote you a wonderful post, and she touched on

all the very important ones. I do want to stress as

well that you need a DMARD like Methotrexate,

Plaquenil, Arava, etc. to try and control the

progression of the disease itself. Prednisone just

covered up the pain and inflammation, it did nothing

to fight RA. That is what the DMARD does. Early

aggressive treatment is the only way to fight this

disease - otherwise, destruction of your joints will

continue to occur.

All medications have scary side effects, they have to

tell you every little thing that might happen to cover

their butts. I have been on Mtx for four years now,

and aside from some hair thinning and loss, I have had

no other serious problem with it - if you can call

hair loss serious. I have no stomach problems - I

take it at night on Friday, knowing that I will be

able to sleep through any nausea I might experience,

and also knowing that if I am more fatigued the next

day, that I will be able to rest.

As said, it is the gold standard for RA

treatment, and has helped me, and now I also take

Enbrel with it, and this comb is really good.

If the Mtx does not help you, there are other DMARDs

to try, and keep trying until one does help - it is

very important that you get the disease under control.

I cannot really address the issue of having other

children, mine are now 19 and 22, but there are others

here on this board who have had babies while being

treated for RA, and I am hoping they will speak up on

this issue. Discuss this also with your OB/GYN.

I hope this has helped to give you more food for

thought on Mtx. If you have any further questions,

simply ask, and someone will answer you. Put it in

the subject line like you did before and it will get

our attention more quickly! Hang in there -

Kathe in CA

p.s. Congratulations on your beautiful baby girl!

__________________________________________________

[Guest guest]

Nicely done, !

It can't be stated often enough that the risks of untreated RA are far

greater than the risks of methotrexate or the most commonly used DMARDs.

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 - I'm so scared!

> Hi ,

>

> I can certainly relate to being scared about RA _and_ all the

> different drugs. I was dx'd in January, and we're still trying to

> find the right combination of drugs to keep my RA under reasonable

> control. I can't tell you anything about the safety of different

> drugs in terms of child bearing, as I am past that stage in life...

> my kids are 15 & 13 now. But I can talk a little bit about

> Methotrexate.

>

> It's really REALLY important to get on some kind of drug that will

> actually alter the course of RA, rather than just relieve the

> symptoms. Prednisone makes you feel better, but besides the fact

> that it can have many really bad long-term side effects, it also

> doen't slow the progression of permanent joint damage. For that,

> you need a " DMARD " . ( " disease modifying anti-rheumetic drug " )

>

> Even though Methotrexate has a number of possible, scary, side

> effects it is sort of the " gold standard " in that it has LESS side

> effects than many of the others, and works very well for many

> people. Even if it doesn't work well enough by itself (it doesn't

> for me) it seems to increase the effectiveness of most of the other

> RA drugs.

>

> The side effects fall into two categories, the less " serious " ones,

> that can make you absolutely miserable, and the ones that can be

> life-threatening. If your rheumatologist is following you

> carefully, and you are getting your bloodwork done regularly, they

> can pull you off the Mtx if there are any signs of the really

> serious side effects. With the less dangerous, every-day side

> effects, you will know right away whether you are going to have

> them, and then you will have to decide whether they are tolerable or

> not.<g>

>

> There are a number of things that can be done to alleviate some of

> the less dangerous but troublesome side effects, and the good news

> is that if the side efffects _are_ intolerable, they go away

> relatively quickly when you stop taking the Mtx. You will probably

> be given folic acid to take daily while you are taking Mtx, and this

> prevents or at least helps with many of the side effects.

>

> In my case, when I was on oral Mtx (which is probably the more

> common way to take it) it made me very sick, with flu-like symptoms

> that put me in bed for 2 days after taking it each week. At that

> point, the rheumatologist had me start taking Leucovorin (folinic

> acid, which is like a really strong version of folic acid) 12 hours

> after taking the Mtx. That kept me from getting so sick, but I was

> still pretty tired out the day after I took the Mtx.

>

> Finally I switched to injectable Mtx. I was pretty nervous about

> the idea of giving myself shots, but once you get over

> the " ickiness " of it, it's really not a big deal. Think about it...

> diabetics give themselves shots every day! For me, this made all

> the difference in the world. Where I had to plan my life around the

> fact that I'd be a basket case for 24 hours after I took the oral

> Mtx, now the worst that happens is that I tend to want to go to bed

> a little earlier that night.

>

> The Mtx alone is not enough to control my RA, and I am currently

> taking Enbrel as well, and crossing my fingers that this will be the

> answer. I was on Arava with the Mtx for a while, which was working

> really well. But the Arava (BTW, Arava is DEFFINITELY not OK for

> people who want to become pregnant) started to affect my liver, and

> I had to come off. (this was determined by blood tests, and I was

> taken off it before any permanent damage could be done) I've only

> been on the Enbrel for a couple of weeks, (I take my 3rd shot

> tomorrow) and I _think_ I'm starting to see an improvement.

>

> The important thing to remembe is that RA is a nasty disease, and

> unless you treat it aggressively, it can lead to permanent deformity

> and disability. You don't want that to happen with little ones to

> raise! Yes, RA dugs can have bad side effects, but so can ANY

> drugs, even Tylenol. If you get your bloodwork done regularly, and

> follow up with your rheumatologist when you should, you can catch

> problems before they get out of hand.

>

> I know there are a number of women on this board that are of child

> bearing age, and have had experiences with a number of different RA

> drugs. Hopefully some of them will chime in on that aspect of

> things. But in the mean time, try to get yourself onto a DMARD that

> works for you, and get off that prednisone if you can. It may be

> safe for your baby, but long-term, it's not safe for you!

>

>

>

>

>>

>> Hi, I am new to this group but it seems really popular so I hope

> you can help me with

>> advice and/or support. I was diagnosed with RA in September last

> year when I was

>> four months pregnant. I went on prednisone because that was the

> only thing safe

>> enough to use during pregnancy and after the birth while I

> breastfed my daughter.

>> She is now five months old and is bottlefed. I have had some bad

> side effects from the

>> prednisone in the past month so I will be seeing my rheumatologist

> to change

>> medication. Obviously I will have to wean off the prednisone, but

> from our previous

>> discussions, he wants to put me on methotrexate. I have been doing

> research on the

>> net about this drug and now I'm terrified - the side effects sound

> just as bad (if not

>> worse) than prednisone! Is methotrexate worse than prednisone? Or

> will it give me a

>> pain-free life? Do most people have injections or take it orally?

> Are there

>> alternatives so that I don't have some powerful drug in my body?

> How will it effect my

>> chances of having another baby in the future (since it effects

> DNA)? I am so scared I

>> will react badly to this new medication that I'd rather have

> painful joints... sounds

>> dumb I know, but I've already had bad reactions to the prednisone

> that scared me.

>> Thanks for your advice.

[Guest guest]

I take methotrexate and in the process of weening myself off prednzone.

I used to Humeri, but to tell you I have had better results from the MTX.

I have kidney problems that give me problems with nausea, so I was afraid of

taking MTX pills because of the nausea, So I do take the MTX shots. The shots

are not painful, the medicine is more effective this way, and because it

bypasses your stomach no nausea! I have had some diarrhea, but not severe, and

after a couple of weeks it seems to settle down. in WI

<sjl26@...> wrote:

Hi, I am new to this group but it seems really popular so I hope you

can help me with

advice and/or support. I was diagnosed with RA in September last year when I was

four months pregnant. I went on prednisone because that was the only thing safe

enough to use during pregnancy and after the birth while I breastfed my

daughter.

She is now five months old and is bottlefed. I have had some bad side effects

from the

prednisone in the past month so I will be seeing my rheumatologist to change

medication. Obviously I will have to wean off the prednisone, but from our

previous

discussions, he wants to put me on methotrexate. I have been doing research on

the

net about this drug and now I'm terrified - the side effects sound just as bad

(if not

worse) than prednisone! Is methotrexate worse than prednisone? Or will it give

me a

pain-free life? Do most people have injections or take it orally? Are there

alternatives so that I don't have some powerful drug in my body? How will it

effect my

chances of having another baby in the future (since it effects DNA)? I am so

scared I

will react badly to this new medication that I'd rather have painful joints...

sounds

dumb I know, but I've already had bad reactions to the prednisone that scared

me.

Thanks for your advice.

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

---------------------------------

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[Guest guest]

> I do get lab work done every two months--and so far everything is

> completely normal. Even my ESR rate is in the normal range.--I find

> this a little odd, because I can still see swelling in my ankles and

> fingers.

My sed rate is in the normal range now too, and I still have swelling

in my joints from time to time, and have joint pain/stiffness daily.

My rheumatologist doesn't seem particualrly surprised by this. She

does seem to think we're moving in the right direction with meds,

though, that my sed rate is so low. Now, if my joints would only act

like THEY agree.<g> The big positive difference that I can see is

that I am not as terribly fatigued as I was before.

[Guest guest]

>

> Hi :

>

> I am so happy to hear that you believe you are

> beginning to feel some benefit from the Enbrel! I am

> keeping my fingers crossed for you and prayers coming

> that this will be THE medication for you! Keep on

> riding, my friend!

Thanks, Kathe!

I took my second Embrel shot last Friday, (the rheumatologist had me

take it a day early because I was going away) and I was feeling lousy

Friday & Sat. Sunday I started to feel better, even though I was at a

conference at a large university, where I needed to do a lot of

walking. Monday - Wed., I felt pretty darned good, but then yesterady

and today, not so good again. So I'm _hoping_ that I felt better

becaue of the Enbrel, but just haven't had it in my system long enough

to sustain it. I'm actually looking forward to taking my shot

tomorrow to see if I get better again afterwards!

I don't know whether it's wishful thinking or just foolishness, but I

just sent my entries off for the last big Arab show of the season, and

the first show I will have gone to this year. I'm going with a

friend, and taking both my neice and my son along to help. It's a 5

day show, and I only pre-entered 4 classes. I figure if I feel great,

I can always add more classes, and if not, I'll just take it easy and

enjoy being at the show. We'll have our camper there, so if I'm

tired, I can always just go lie down and take a nap.

So keep your fingers crossed for me!

[Guest guest]

Hi, I just want to say a big THANK YOU to and Kathe (and all the others

who

responded to my post)! You have really helped me put things into perspective and

also understand how these drugs work.

When I had a flare last month the prednisone didn't seem to help much with the

pain

and instead I reacted with severe mood swings, blurred vision and my skin felt

like it

was crawling! The mood swings were the worst... I was completely out of control

and

was impatient with my daughter. In a matter of minutes I'd go from happy and

normal

to an absolute rage and then depressed and crying, and then normal again. My

husband didn't know how to handle it and I can barely remember why I felt that

way.

It was almost like something had taken over my state of mind.

I think I'm in denial of how bad my RA is... like you have said, the prednisone

has

covered up any damage being done and therefore I feel like there's nothing

wrong. I

recall one day when I forgot to take it and the pain was excruciating! I've

never

forgotten since!

Thanks again for your advice and support,