Methotrexate

[Guest guest]

I take it.  It is really my only drug I can take as I am allergic to sulfa and

can never take biologics again. It helped me the last time I was on it. I still

get swollen joints but nothing like without it.  I feel much better on it than

off it. There are side effects and potential problems with it which must be

considered, but for me it is allowing me to live my life.  Patty

[Guest guest]

I am amazed how much of this medication some of you can take. I wish I could

take more, but at 12.5mg/ week, my ALT result goes up and I have to go off it

for a couple weeks. Blood work every month, and my rheumy says studies show

better results when you combine MTX with the biologics, so I have taken it with

Enbrel, Humira, and currently Simponi, but will probably be starting Remicade in

Feb. All these biologics will go bye bye in Dec 2011 when my Cobra ends. I

picked up my Simponi as the Kaiser pharmacy yesterday and it would have cost

$2045!! So I will probably only be on MTX which is much less. I haven't had any

hair loss but take my folic acid every day.

" lovemycat3 " <catloveris@...>

[Guest guest]

greetings jennifer,

 

i don't really post to this list; mostly i just lurk and read other peoples

posts.  yours caught my eye for some reason though.  i started on

MTX (methotrexate) the end of janurary.  I didn't see any improvement at all

till early march.  i continued to see slow inprovement till about a month ago

when things kind of leveled off again.  I will see the doc again in about 5

weeks.  then we will figure out where to go next as i still am nowhere close to

where i need to be to lead anything resembling a life.  as far as people

telling you to ignore or push through the pain, well, they don't live with it

and can never really understand.  when i'm faced with that type of a situation,

i try to remain patient and educate the person.  it's about the only thing we

can do.  best of luck.

 

blessings,

elizabeth

From: <jellynn21@...>

Subject: [ ] Methotrexate

Date: Monday, May 24, 2010, 4:06 PM

 

Hi,

I was wondering how long after starting metho does it usually take to see if it

is working. I have only been on it for 3 weeks and have had no improvement. My

hands keep hurting so much almost all day. Just typing this is hard and I have

had more swelling and overall pain. I also have fibromyalgia which doesn't help.

I am going on vacation in a couple of weeks and want to feel better. If anyone

has any ideas it would help.

my husband just tells me to ignore it or to just push myself to get out and do

things. He doesn't understand that sometimes I am so tired and hurt so much just

breathing is hard. But I want so much to enjoy my trip.

Thanks for letting me rant a little

[Guest guest]

Hi...

It takes 6 to 8 weeks to get the drug in your system to a point that it is

effective. I started feeling better effects after four weeks but it is a slow

process. Usually a Rheumatologist will increase the dose once you are use to it.

In my experience I found " pushing it " only results in pain. Staying in motion

and being flexible without pushing it is the key, range of motion excersises

help and light activitity that does not put stress on your joints and flare

areas. If I could ignore it I wouldn't be taking all this medication.

Stan

Seattle, Rain.

[ ] Methotrexate

Hi,

I was wondering how long after starting metho does it usually take to see if it

is working.  I have only been on it for 3 weeks and have had no improvement.

 My hands keep hurting so much almost all day.  Just typing this is hard and I

have had more swelling and overall pain.  I also have fibromyalgia which

doesn't help.  I am going on vacation in a couple of weeks and want to feel

better.  If anyone has any ideas it would help.  

  my husband just tells me to ignore it or to just push myself to get out and

do things.  He doesn't understand that sometimes I am so tired and hurt so much

just breathing is hard.  But I want so much to enjoy my trip.

  Thanks for letting me rant a little

[Guest guest]

Hi

Sometimes too much information can be a bad thing :-). The side effects listed

with mtx are possibilities - not probabilities. My daughter Audrey was diagnosed

with arthritis at 13 months. She has been on naproxen, mtx, enbrel and now

Remicade. I worry about the chances of causing cancer, but I also worry about

the effects of inflammation on her joints and especially her eyes. To me, the

possibilities are not worth worrying about right now. Right now I need to be

worrying about the effects of the iritis on her NOW. I need to worry about the

damaging effects of inflammation NOW and those risks. Its a balancing act for

sure. You need to make the best decision for you, but obviously the doc is

worried about joint damage if he's suggesting mtx. The worst side effect Audrey

has is nausea, and we counteract that with ondansetron before her shot. She's a

little tired the next day too, but not bad. One thing I keep in mind is that

even if just a few people had a certain side effect from the medication, that

means it has to be listed as a possibility. That doesn't mean YOU will get that

side effect.

Hope that helps,

Methotrexate

Hi everyone:

I have had Arthritis since the age of five. I am all grown up now, but have

struggled with it continually. I have recently been having very bad flare-ups in

most of my joints, and my Doctor feels it may have went into rhuematoid. They

are talking about starting me on methotrexate, and I have done my own internet

research, and what I have read concerns me greatly. I know many of you and your

children take it. Can anyone tell me what your experience has been with it good

and bad please. I am hesitant to take it. Thanks

[Guest guest]

,

I am sorry that you continue to struggle with this.

Methotrexate

Hi everyone:

I have had Arthritis since the age of five. I am all grown up now, but have

struggled with it continually. I have recently been having very bad flare-ups in

most of my joints, and my Doctor feels it may have went into rhuematoid. They

are talking about starting me on methotrexate, and I have done my own internet

research, and what I have read concerns me greatly. I know many of you and your

children take it. Can anyone tell me what your experience has been with it good

and bad please. I am hesitant to take it. Thanks

[Guest guest]

,

I will try this again. I am sorry that you have had to deal with this disease

for so long. My daughter Jaye has been dealing with it for quite some

time along with some other issues. She was diagnosed at age 11 but the ped then

told us that we had probably been dealing with it for many years before that.

Jaye has now been on mtx for almost a year and does not have bad side

effects. She is more tired on the day after the injection but does not get

sick. She is taking meloxicam & hydroxichloroquine along with the methotrexate

for the arthritis and then folic acid to help with the tummy and prevacid for

her gerd. She is also on anti seizure med's. She does real well with taking the

injections. I know it makes her more tired the next day so we generally give it

to her on Friday night just before bed. We get regular lab draws to check her

out so that her med's for arthur and the keppra do not cause problems. I focus

on the good rather then the what might be's. She is much better now then she

was before she started the mtx.

Veri & Jaye 16 poly

Methotrexate

Hi everyone:

I have had Arthritis since the age of five. I am all grown up now, but have

struggled with it continually. I have recently been having very bad flare-ups in

most of my joints, and my Doctor feels it may have went into rhuematoid. They

are talking about starting me on methotrexate, and I have done my own internet

research, and what I have read concerns me greatly. I know many of you and your

children take it. Can anyone tell me what your experience has been with it good

and bad please. I am hesitant to take it. Thanks

[Guest guest]

Hello , My daughter Carmelita, 11 was diagnoised 2 years ago, but I suspect

she had JRA since she was about 5.  It just took a long time to get it.  She

has been on oral  mtx since day one and she did a total 360 in her activity and

pain level.  The first couple weeks she throw up once a week both times she had

pizza.  Recently she has been complaining about stomach pains after she takes

the mtx but I think it has more to do with eating late.  My son had swine flu

last year and she had to be treated as if she had it because she was on mtx and

once her fever reached 104 and we had to go to the ER to make sure it wasn't a

serious virus.  I am currently re-researching the long term effects of being on

mtx.  But for now the quality of her life improved dramaticly.  Can you share

some of the sites where you found the troubling information? 

 

Good luck and God Bless.

From: <kgardner002@...>

Subject: Methotrexate

Date: Friday, August 13, 2010, 11:59 AM

 

Hi everyone:

I have had Arthritis since the age of five. I am all grown up now, but have

struggled with it continually. I have recently been having very bad flare-ups in

most of my joints, and my Doctor feels it may have went into rhuematoid. They

are talking about starting me on methotrexate, and I have done my own internet

research, and what I have read concerns me greatly. I know many of you and your

children take it. Can anyone tell me what your experience has been with it good

and bad please. I am hesitant to take it. Thanks

[Guest guest]

Tons of us have experience with mtx. It is the gold standard treatment for jra.

Ask away on your questions.

Sent from my iPhone

On Jan 28, 2011, at 6:39 AM, " dmosawi " <denisemosawi@...> wrote:

> Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

>

>

[Guest guest]

This is one of those things that depends on each child. It can depend on the

dosage they are given as well. I know some have had very upset stomach and even

to vomiting. Some it just makes them more tired on the day or two after.

Jaye was 15 when she started mtx and her only side effect was being more tired.

She does not get upset stomach at all. But then she is older and a good size

girl. I am not sure if size or age has much to do with the side effects or not.

I just know it helps her. So we give it on Friday night before bed so she can be

lazy on Saturday if she needs to be. She now also gets enbrel on Friday night

as well and I have not noticed much of any side effect that it has that is

negative. The only thing we have noticed is that she is doing much better.

Veri & Jaye 17 today and poly

Methotrexate

Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

[Guest guest]

Audrey is seven now and has been on injectible mtx for a long time. She gets

the severe nausea and vomiting from it so she takes an anti-nausea drug

called Zofran (generic name is ondansetron). We tried the phenergran but

the liquid was green and so nasty tasting she refused to take it and the few

times I did manage to get it down her, she still vomited all night long.

She's also on Humira every other week and so far seeems to be doing great on

it.

mom to her hero Audrey that has been battling this stupid disease gor

6 1/2 years now without remission of any type.

Sent via DROID on Verizon Wireless

Methotrexate

Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

[Guest guest]

My daughters hair was thinner during Metx. We did see it pick up on growth.

She was sick more. I watching Bruising on her. I asked my peditrcian not to

expose her to the sick room and they put us off to the side area. If she got a

fever I took in. Her eyes stayed clear. Terri B

From: newmom2003@...

Sent: Saturday, January 29, 2011 8:37 PM

Subject: Re: Methotrexate

Audrey is seven now and has been on injectible mtx for a long time. She gets

the severe nausea and vomiting from it so she takes an anti-nausea drug

called Zofran (generic name is ondansetron). We tried the phenergran but

the liquid was green and so nasty tasting she refused to take it and the few

times I did manage to get it down her, she still vomited all night long.

She's also on Humira every other week and so far seeems to be doing great on

it.

mom to her hero Audrey that has been battling this stupid disease gor

6 1/2 years now without remission of any type.

Sent via DROID on Verizon Wireless

Methotrexate

Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

[Guest guest]

Yep. Kat's been on it for about 3 years. Age 3 - 6. Naseau & vomiting which

is now under control, mouth sores that we fight with folic acid, tired and out

of sorts the next day or two. Definately worth it though. Spondy SO much

better with it. Liver starts to react at high doses though so she's also been

on Enbrel & now Humira. Still working on finding just the right mix. Good

luck!

Kirsten

mom to , 6, spondy

>

> Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

>

[Guest guest]

Yep. Kat's been on it for about 3 years. Age 3 - 6. Naseau & vomiting which

is now under control, mouth sores that we fight with folic acid, tired and out

of sorts the next day or two. Definately worth it though. Spondy SO much

better with it. Liver starts to react at high doses though so she's also been

on Enbrel & now Humira. Still working on finding just the right mix. Good

luck!

Kirsten

mom to , 6, spondy

>

> Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

>

[Guest guest]

Hi, now 12 1/2 started on his 3rd birthday as the injectable in juice. On

the second dose I could tell he was ready to throw up but didn't. After about 3

moths we switched to the shots.He never,ever had any other side effects from the

injectable.Several yrs later he had been in a medicated remission for so long

they switched him to the pills. After about 6 months he told his ped rheumy that

he wanted to go back on the shots and they asked him why.'s answer was "

They make my stomach hurt and sometimes I throw the pills up whole " . The ped

rheumy was just fine with that because the shots work better and you absorb the

whole dose unlike the pills. The shots are safer and it is to my understanding

the MTX itself does not cause the stomach to become sick,it has something to do

with a chemical that reacts with the brain that tells the stomach to get sick.

There are meds though to help counteract it. List all your concerns and take

them with you to your next appointment or just call them up and discuss it.

Becki and 12 systemic onset drug free come Valentines Day

________________________________

From: dmosawi <denisemosawi@...>

Sent: Fri, January 28, 2011 8:39:38 AM

Subject: Methotrexate

Does anyone has an experience of the side effects of Methotrexate on young

children? (6 - 8 years old)?

[Guest guest]

is now 7 and has been on injectible MTX for almost two years. The only

side effect for him is being very sleepy the next day...so we give the shot

either Friday or Saturday evening. I am now noticing some bruising at the

injection site but he also gets a weekly Enbrel injection so I think it's from

that.

He calls the MTX the 'good shot' as opposed to the Enbrel...the 'bad shot'. He

also takes folic acid to fight the MTX side effects.

All the best,

& , 7, poly plus a bunch of other 'stuff'

Sent from my iPhone

[Guest guest]

Just wanted to say thank you to those of you that responded to my question on

the side effects of Methotrexate. My six year old son has been diagnosed this

week with polyarticular and psoriatic arthritis and so I am eager to learn as

much as possible about fellow sufferers experiences. It's great to know that

this support group exists.

[Guest guest]

hello,

My husband has been on this med since his diagnosis 4 years ago. He takes it on

Sunday and says he gets an upset stomach and headache.

Does anyone have suggestions for this?

Thanks

Kathy Harden

[Guest guest]

I have heard that taking Robitussin cough medicine after MTX helps with the side

effects, although I've not tried it personally.

>

> hello,

> My husband has been on this med since his diagnosis 4 years ago. He takes it

on Sunday and says he gets an upset stomach and headache.

> Does anyone have suggestions for this?

> Thanks

> Kathy Harden

>

[Guest guest]

you could try the injectable mtx

in PA

On Sun, Mar 27, 2011 at 11:48 PM, kathy <jkgvharden@...> wrote:

>

>

> hello,

> My husband has been on this med since his diagnosis 4 years ago. He takes

> it on Sunday and says he gets an upset stomach and headache.

> Does anyone have suggestions for this?

> Thanks

> Kathy Harden

>

>

>

[Guest guest]

Susie,

I too take Methotrexate and Folic Acid I also get mouth sores frequently. I have

found, at my doctor's suggestion (or maybe from someone here) that if I eat at

least a little yogurt every day it makes a BIG difference in helping to preven

the mouth sores.

in Califoria

[Guest guest]

Yes my Doctor told me to split the dose over a 24 hour period and that helpled a

ton check with your Doctor before doing this.

 

From: kathy <jkgvharden@...>

Subject: [ ] Methotrexate

Date: Sunday, March 27, 2011, 10:48 PM

 

hello,

My husband has been on this med since his diagnosis 4 years ago. He takes it on

Sunday and says he gets an upset stomach and headache.

Does anyone have suggestions for this?

Thanks

Kathy Harden

[Guest guest]

Try taking it before he goes to bed, often by morning it has metabolized. It

helped me.

also i use phenergen for nausea- it makes me sleepy too so i take the mtx & pehn

before bed once a week- used to be nauseous for days, now its much better

Beth

>

> hello,

> My husband has been on this med since his diagnosis 4 years ago. He takes it

on Sunday and says he gets an upset stomach and headache.

> Does anyone have suggestions for this?

> Thanks

> Kathy Harden

>

[Guest guest]

I take the MTX on Friday nights after eating something and an hour or two before

bed. No problems with stomach aches or headaches. Some people are more

sensitive to it though and do better with injections.

Janice in GA

> >

> > hello,

> > My husband has been on this med since his diagnosis 4 years ago. He takes it

on Sunday and says he gets an upset stomach and headache.

> > Does anyone have suggestions for this?

> > Thanks

> > Kathy Harden

> >

>

[Guest guest]

My headaches on MTX were so horrible, I could barely open my eyes for five

days..literally!!!! By the time I had to take my weekly dose, the headache was

GONE..only to come right back with the next dose . I managed to take it for

six weeks and had to give it up. I then took Arava, but it affected my liver so

I had to give that up. Humira was my saving grace. I had to stop it for

surgery, which I did for 12 weeks. Had surgery, but developed a near death

staph infection from the surgery and never restarted the Humira. I'm too afraid

.

My sister loves the MTX for her Psoriatic Arthritis!

> > >

> > > hello,

> > > My husband has been on this med since his diagnosis 4 years ago. He takes

it on Sunday and says he gets an upset stomach and headache.

> > > Does anyone have suggestions for this?

> > > Thanks

> > > Kathy Harden

> > >

> >

>