Scared about going on MTX

[Guest guest]

Its normal to feel this way yes.. Heidi on the list here helped me through

taking mine the first time i started. I have not had any side effects except

im really tired but not sure that is from the metho or just my body being

tired. I think this med has helped me more than anything to be honest.

Jolene

In a message dated 5/4/2008 4:45:15 P.M. Eastern Daylight Time,

kamilleon@... writes:

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and

just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info

and after doing some research, I cannot explain to you all how scared sh*tless

I am about starting this medication! I can't remember any other time I have

been scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Non-text portions of this message have been removed]

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[Guest guest]

Hi Kami,

Methotrexate is scary. However, it is the most common medication used in the

treatment of RA with the longest, highest success rate. Anyone, please

correct me if I'm wrong. I am taking 8 a week now every Thursday, and I have

to

admit that it helps. Thursdays are a bad day for me, it makes me " fuzzy " ...I

lose focus, etc..and I get tired. By Friday, I'm full of beans again and it

lasts through to Tuesday night , Wednesay. We on this list are all on

different doses, some the injectable, and we take it the ways that it works for

us

individually. I am also on Plaquenil. So far I've had no eye issues. With

MTX you will have to have regular blood levels taken to monitor your liver.

You should also really stick to a routine when taking it, pick the same day,

same time, etc. Take it with a few crackers or whatever when you take your

pills to help with any nausea. It is a scary drug , but it is one that is

helfpul. You have to make a decision regarding your pain level. This can help,

and I believe that you won't find it as bad as the written word, but that all

has to be written as it is a form of chemo. This list is a wealth of

knowledge and I can only speak from my own personal trials with it, but I've

learned

a lot from people on here. Our pain is evil, you don't know how you will

feel from one day to the next, but MTX can help get you on the right track. I'm

sure you'll start on a low dose and eventually increase over time. Give it a

shot, be very open with your Rheumatologist. It will take about 4 to 5

weeks to work. I hope this has helped you.

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/4/2008 4:45:02 P.M. Eastern Daylight Time,

kamilleon@... writes:

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and

just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info

and after doing some research, I cannot explain to you all how scared sh*tless

I am about starting this medication! I can't remember any other time I have

been scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Non-text portions of this message have been removed]

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info and

after doing some research, I cannot explain to you all how scared sh*tless I am

about starting this medication! I can't remember any other time I have been

scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Guest guest]

Several medications we have to take sound very scary. Yet it's important to

remember that not every side effect listed will happen to you. Legally, those

things have to be listed. My doctor once told me, if someone is sure that they

don't want to sleep at night, that they should read all of those little

pamphlets from the pharmacy right before going to bed. What it does for one

person, it might not do for a next. Just like Plaquenil. Many of us can take

it without getting any toxicity so the same is most likely for methotrexate and

other drugs as well. Just like with Sulfasalazine, there are many that can take

it and hardly get any infections. I've been off the drug more than I have been

on it due to constantly getting sick, despite taking care of myself, wearing a

face mask, staying away from sick people, washing my hands constantly.

Hopefully here you will be able to find some positive information on

Methotrexate. One of my doctors once said the internet is a

great place for information but to be very careful what I read. Here, is the

first place the information is always accurate. Discuss your fears with the

doctor. Perhaps you can try it for awhile to see how you do on it. One of my

favorite new mantras (being a sufferer of a severe anxiety disorder) is " I've

nothing to fear but fear itself. " Just take small baby steps with this and I

hope that it works for you:)

sposy@... wrote: Hi Kami,

Methotrexate is scary. However, it is the most common medication used in the

treatment of RA with the longest, highest success rate. Anyone, please

correct me if I'm wrong. I am taking 8 a week now every Thursday, and I have

to

admit that it helps. Thursdays are a bad day for me, it makes me " fuzzy " ...I

lose focus, etc..and I get tired. By Friday, I'm full of beans again and it

lasts through to Tuesday night , Wednesay. We on this list are all on

different doses, some the injectable, and we take it the ways that it works

for us

individually. I am also on Plaquenil. So far I've had no eye issues. With

MTX you will have to have regular blood levels taken to monitor your liver.

You should also really stick to a routine when taking it, pick the same day,

same time, etc. Take it with a few crackers or whatever when you take your

pills to help with any nausea. It is a scary drug , but it is one that is

helfpul. You have to make a decision regarding your pain level. This can help,

and I believe that you won't find it as bad as the written word, but that all

has to be written as it is a form of chemo. This list is a wealth of

knowledge and I can only speak from my own personal trials with it, but I've

learned

a lot from people on here. Our pain is evil, you don't know how you will

feel from one day to the next, but MTX can help get you on the right track.

I'm

sure you'll start on a low dose and eventually increase over time. Give it a

shot, be very open with your Rheumatologist. It will take about 4 to 5

weeks to work. I hope this has helped you.

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/4/2008 4:45:02 P.M. Eastern Daylight Time,

kamilleon@... writes:

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and

just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info

and after doing some research, I cannot explain to you all how scared sh*tless

I am about starting this medication! I can't remember any other time I have

been scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Non-text portions of this message have been removed]

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Is there anything we can do about that whiped out feeling. that's how i

feel lately a day after the metho.

Jolene

In a message dated 5/4/2008 10:10:03 P.M. Eastern Daylight Time,

brightt@... writes:

Kami,

You've already gotten some great feedback, but I thought I'd chime in a

little anyway.

I totally understand why you feel frightened of MTX. I was too. In

fact, all the drugs sound scary. Anyway, I trust my very wonderful

doctor; and she really wanted me to give it a try.

Now, I've been taking MTX for almost 2 years. It has helped me sooo

much. The only side effect I've experienced is a little bit of thinning

hair, but not a dramatic amount. (And, like a lot of others, I tend to

feel really tired or, sometimes, wiped out for about 24 hours after my

weekly dose.)

I see my rheumy every 3 months, and she questions me carefully for any

possible problems; plus she has my blood tested regularly.

I hope that you're helped as much by MTX as I have been. :-)

Many good wishes,

Prakasha

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favorites at AOL Food.

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[Guest guest]

I think that is right here. I was the one that tried to get Embrel,

but I couldn't afford it. So I'm taking Plaquenil and I haven't had any

trouble with my eyes....that I know of. I find out this week. And I haven't

had any pain at all...just a little stiffness in my left forefinger. But I've

also started to take Metho and I take 4 a week, and I think with the Plaquenil

that will be just right....for now....

if I get worse, my Dr. wants me to take Remicade, which I know nothing

about......but we don't know if my insurance will pay enough of it.

Anyway, like said, it is all trial and error, and each one of us

reacts differently....but taking " something " is better than nothing at

all...and I have a few friends who are suffering with RA and have had treatment

at all, other than some Aleve or something like that....

Barbara

stephanie <stephieann2@...> wrote:

Several medications we have to take sound very scary. Yet it's

important to remember that not every side effect listed will happen to you.

Legally, those things have to be listed. My doctor once told me, if someone is

sure that they don't want to sleep at night, that they should read all of those

little pamphlets from the pharmacy right before going to bed. What it does for

one person, it might not do for a next. Just like Plaquenil. Many of us can take

it without getting any toxicity so the same is most likely for methotrexate and

other drugs as well. Just like with Sulfasalazine, there are many that can take

it and hardly get any infections. I've been off the drug more than I have been

on it due to constantly getting sick, despite taking care of myself, wearing a

face mask, staying away from sick people, washing my hands constantly. Hopefully

here you will be able to find some positive information on Methotrexate. One of

my doctors once said the internet is a

great place for information but to be very careful what I read. Here, is the

first place the information is always accurate. Discuss your fears with the

doctor. Perhaps you can try it for awhile to see how you do on it. One of my

favorite new mantras (being a sufferer of a severe anxiety disorder) is " I've

nothing to fear but fear itself. " Just take small baby steps with this and I

hope that it works for you:)

sposy@... wrote: Hi Kami,

Methotrexate is scary. However, it is the most common medication used in the

treatment of RA with the longest, highest success rate. Anyone, please

correct me if I'm wrong. I am taking 8 a week now every Thursday, and I have to

admit that it helps. Thursdays are a bad day for me, it makes me " fuzzy " ...I

lose focus, etc..and I get tired. By Friday, I'm full of beans again and it

lasts through to Tuesday night , Wednesay. We on this list are all on

different doses, some the injectable, and we take it the ways that it works for

us

individually. I am also on Plaquenil. So far I've had no eye issues. With

MTX you will have to have regular blood levels taken to monitor your liver.

You should also really stick to a routine when taking it, pick the same day,

same time, etc. Take it with a few crackers or whatever when you take your

pills to help with any nausea. It is a scary drug , but it is one that is

helfpul. You have to make a decision regarding your pain level. This can help,

and I believe that you won't find it as bad as the written word, but that all

has to be written as it is a form of chemo. This list is a wealth of

knowledge and I can only speak from my own personal trials with it, but I've

learned

a lot from people on here. Our pain is evil, you don't know how you will

feel from one day to the next, but MTX can help get you on the right track. I'm

sure you'll start on a low dose and eventually increase over time. Give it a

shot, be very open with your Rheumatologist. It will take about 4 to 5

weeks to work. I hope this has helped you.

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/4/2008 4:45:02 P.M. Eastern Daylight Time,

kamilleon@... writes:

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and

just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info

and after doing some research, I cannot explain to you all how scared sh*tless

I am about starting this medication! I can't remember any other time I have

been scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Guest guest]

I kno what u mean about being scared. i was so scared i changed rheumys so he

wouldn't try to persuade me. i found a new doc and am om plaquenil for about a

year. I am doing great thank God..........no pain and no eye problems . I'll

pray for u and i'm sure u will be fine. Thousands of people use it bit i know

how scared i was when i read up on it

sposy@... wrote: Hi Kami,

Methotrexate is scary. However, it is the most common medication used in the

treatment of RA with the longest, highest success rate. Anyone, please

correct me if I'm wrong. I am taking 8 a week now every Thursday, and I have to

admit that it helps. Thursdays are a bad day for me, it makes me " fuzzy " ...I

lose focus, etc..and I get tired. By Friday, I'm full of beans again and it

lasts through to Tuesday night , Wednesay. We on this list are all on

different doses, some the injectable, and we take it the ways that it works for

us

individually. I am also on Plaquenil. So far I've had no eye issues. With

MTX you will have to have regular blood levels taken to monitor your liver.

You should also really stick to a routine when taking it, pick the same day,

same time, etc. Take it with a few crackers or whatever when you take your

pills to help with any nausea. It is a scary drug , but it is one that is

helfpul. You have to make a decision regarding your pain level. This can help,

and I believe that you won't find it as bad as the written word, but that all

has to be written as it is a form of chemo. This list is a wealth of

knowledge and I can only speak from my own personal trials with it, but I've

learned

a lot from people on here. Our pain is evil, you don't know how you will

feel from one day to the next, but MTX can help get you on the right track. I'm

sure you'll start on a low dose and eventually increase over time. Give it a

shot, be very open with your Rheumatologist. It will take about 4 to 5

weeks to work. I hope this has helped you.

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 5/4/2008 4:45:02 P.M. Eastern Daylight Time,

kamilleon@... writes:

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and

just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info

and after doing some research, I cannot explain to you all how scared sh*tless

I am about starting this medication! I can't remember any other time I have

been scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Guest guest]

Kami,

I have been on MTX a year next month. I also was afraid but I needed

to try what would stop or put this horrible disease into remission.

It hasn't been that bad, really. Sometimes I get a little nausea in

the morining but it goes away quickly. It hasn't worked that well

for me though. The nodules and my joints keep getting bigger and the

pain is really bad some days. After my surgery on the 15th the

Rheummy is going to try a different medication. Now, I am worried

about being off the MTX and what the new meds. might be! If it isn't

any worse, I can handle it. I think most of us live one day at a

time.

You will be just fine with monitoring. Don't forget, the monthly

blood work is a must. If your hair thins try Suave voulmizing foam.

It does the trick for me.

Take care Hon, I hope you have great results.

Shirley

>

> I had to stop Plaquenil last week due to changes in my retina. It

must have finally started working because... I stopped taking it on

Sunday and by yesterday I was in so much freaking pain again I

stayed in bed most of the day and just got out of bed at 4 PM

today..... WOWOWOWOW. I cannot believe I am in this much pain AGAIN.

It certainly was not missed!

>

> Wednesday I see the doctor about going on Methotrexate. They sent

me info and after doing some research, I cannot explain to you all

how scared sh*tless I am about starting this medication! I can't

remember any other time I have been scared to take a medication.

>

> Someone PLEASE tell me this is normal..... I am afraid I will go

in to the doctor on Wednesday and change my mind......

>

>

> *~ Kami ~*

>

>

>

>

>

[Guest guest]

Hi Kami, it's totally normal to be afraid. Just remember that if it's not a

good fit for you, you don't have to stay on it. However, if it really works

great for you, then with every dose you will gain confidence that it's working

with your body, and the anxiety about side effects decreases. Sometimes I

practice head-in-the-sand techniques when it comes to being freaked out about

the side effects from these meds. I figure that the mobility I gain is worth

the risk. Kate F

[ ] Scared about going on MTX

I had to stop Plaquenil last week due to changes in my retina. It must have

finally started working because... I stopped taking it on Sunday and by

yesterday I was in so much freaking pain again I stayed in bed most of the day

and just got out of bed at 4 PM today..... WOWOWOWOW. I cannot believe I am in

this much pain AGAIN. It certainly was not missed!

Wednesday I see the doctor about going on Methotrexate. They sent me info and

after doing some research, I cannot explain to you all how scared sh*tless I am

about starting this medication! I can't remember any other time I have been

scared to take a medication.

Someone PLEASE tell me this is normal..... I am afraid I will go in to the

doctor on Wednesday and change my mind......

*~ Kami ~*

[Guest guest]

Kami,

You've already gotten some great feedback, but I thought I'd chime in a

little anyway.

I totally understand why you feel frightened of MTX. I was too. In

fact, all the drugs sound scary. Anyway, I trust my very wonderful

doctor; and she really wanted me to give it a try.

Now, I've been taking MTX for almost 2 years. It has helped me sooo

much. The only side effect I've experienced is a little bit of thinning

hair, but not a dramatic amount. (And, like a lot of others, I tend to

feel really tired or, sometimes, wiped out for about 24 hours after my

weekly dose.)

I see my rheumy every 3 months, and she questions me carefully for any

possible problems; plus she has my blood tested regularly.

I hope that you're helped as much by MTX as I have been. :-)

Many good wishes,

Prakasha

[Guest guest]

It scared me so much I thought about not taking it but I think its worth the

risk. Which, after investigation, didn't quite seem so bad. Take your folic acid

and get your blood tested regularly, and whatever else your do says to do.

Fortunately, my docs office constantly reminds me that I'm due to have my blood

drawn. The months just seem to disappear.

ez

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

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