Methotrexate

[Guest guest]

Abby was on oral methotrexate for 3 months and her arthritis started to spread

to other joints so we started on methotrexate injections and that put her into

medicated remission after about 2 months.  From what I understand when you take

the oral your body processes it differently every time so you don't get the same

amount into your system each time, but with the injections it is always the same

every time.

 

(Abby-2 pauci)

From: suwakcl <suwakcl@...>

Subject: methotrexate

Date: Friday, June 12, 2009, 1:03 PM

Hello,

we have a daughter with JRA idiopathic

who has had symptoms for a year,

and was diagnosed in March 2009.

She is 16 years old.

She has been on oral Methotrexate

(20 mg weekly)

with predisone (7.5 mg daily)

since March 2009.

I am wondering if Methotrexate

is the drug of choice?

and

if others have stayed on this

since it was working and not

advanced to other drugs?

We go to Nemour's Clinic

again in July.

thanks for this group!

We find very interesting reads

and people here.

God bless you!

Momma Lori

[Guest guest]

Hi and welcome to the group. Yes, as of now, MTX is usually the first

DMARD that is tried and is often quite successful in getting the disease

under control. Some people are on this and do not need to go on to other

drugs. It seems to me that your daughter is on a dose of MTX that is

rather high. Plus with the prednisone, I would think if she cannot get

under control and lower the pred and stay in control, then she may need

to go on to another drug, perhaps one of the biologics. I only say this

because this is the same dose my husband is right now (minus the

steroids, which he is off of now), and his rheumy would like him to move

on to Enbrel or Humira. The dr feels this will get him feeling better.

My husband is resistant to the idea. But many of the kids here (and

adults with JIA, or one of its forms, or RA) do go on to the biologic

drugs with more success than just the MTX. Sometimes, as I said, the MTX

does the trick and you can begin reducing the other drugs used and

eventually even reduce the MTX itself. My son was doing quite well on it

and was able to start reducing it.

Hope this helps some. Feel free to post any questions you may have.

Someone here has probably had some experience with whatever you may need

to know. Plus there are a number of us with teen/young adult children so

we have experience dealing with a chronic illness in their teen

years,too.

Michele ( 22, spondy)

________________________________

From: [mailto: ] On

Behalf Of suwakcl

Sent: Friday, June 12, 2009 12:03 PM

Subject: methotrexate

Hello,

we have a daughter with JRA idiopathic

who has had symptoms for a year,

and was diagnosed in March 2009.

She is 16 years old.

She has been on oral Methotrexate

(20 mg weekly)

with predisone (7.5 mg daily)

since March 2009.

I am wondering if Methotrexate

is the drug of choice?

and

if others have stayed on this

since it was working and not

advanced to other drugs?

We go to Nemour's Clinic

again in July.

thanks for this group!

We find very interesting reads

and people here.

God bless you!

Momma Lori

[Guest guest]

Hello and welcome. I wish you didn't have to be here, but since you have to, you

have found a great group. Everyone here is wonderful and very informative.

My 15 year old daughter is on the same dosage of methotrexate as your daughter,

but she gets the shot. She is on a slightly higher dose of prednisone than your

daughter. She also takes Kineret. When first diagnosed in March of 2007, she was

put on naproxen. Oral methotrexate was added about a month later and within a

few months she was also put on Remicade infussions. She stayed on that regimen

for about 7 months when the remicade stopped working. She was changed to Enbrel

and became allergic within 3 months. She was changed to Humira and became

allergic within 4 months. She was taken off methotrexate and put on Arava and

prednisone was added. We did that for about 5 months and the Arava just never

worked for her. That is when she was put on Kineret, back on methotrexate at the

current dosage and lowered the prednisone slightly. She still has many flares

and a lot of inflammation, but since she has tried so many medications, we are

at a tough spot. We are trying to get the insurance company to approve a new

biologic called simponi, but we're not sure they will approve it since it is not

approved in children at this time.

So, to answer your question, yes, some people to stay on methotrexate alone if

it is working. Steroids are a wonder drug, but most people have a love hate

relationship with them. They make you feel better, but also cause other issues.

As far as the dosage of methotrexate that your daughter is on, it is a little

high, but it's the same dosage as my daughter is on. I also take methotrexate

and I only take 17.5 mgs weekly. If it's working, I guess that's a good thing,

but if she is still having issues such as pain and inflammation, I would ask

about adding a biologic.

Well, I think I have talked your ear off...LOL. Welcome and feel free to ask all

the questions needed.

If your daughter wants someone to talk to, let me know and I can provide my

daughters email if you want.

and 15

>

> Hello,

> we have a daughter with JRA idiopathic

> who has had symptoms for a year,

> and was diagnosed in March 2009.

> She is 16 years old.

>

> She has been on oral Methotrexate

> (20 mg weekly)

> with predisone (7.5 mg daily)

> since March 2009.

>

> I am wondering if Methotrexate

> is the drug of choice?

> and

> if others have stayed on this

> since it was working and not

> advanced to other drugs?

>

> We go to Nemour's Clinic

> again in July.

>

> thanks for this group!

> We find very interesting reads

> and people here.

>

> God bless you!

> Momma Lori

>

[Guest guest]

Hello!

My daughter, , was officially diagnosed in January of 2008. Her doctor

started her on injectable methotrexate and Naproxen. At the time he said that

we could go with the oral MTX, but the injectable is much more effective. It

did wonders for us for about two months. After that it seemed to maintain, but

not help improve. Eventually was taken off of Naproxen, had Enbrel added

to her MTX, and her MTX was changed to oral. She's on 7.5 MG a week. The MTX

goes up and down with her labwork. She's been off of it for about 3 months now

due to her white cell counts being low, but hopefully her next labs will show

that she can start back on it.

I hope that the doctor had written a script for labwork to be done

occassionally? They check the white blood cells, and also the liver since it

can affect the liver. Em's goes every 6 weeks. All of this can be so confusing.

I'm sorry that you have to join this club, but at least you've found a great

place for info and support. Good luck to you both!

>

> Hello,

> we have a daughter with JRA idiopathic

> who has had symptoms for a year,

> and was diagnosed in March 2009.

> She is 16 years old.

>

> She has been on oral Methotrexate

> (20 mg weekly)

> with predisone (7.5 mg daily)

> since March 2009.

>

> I am wondering if Methotrexate

> is the drug of choice?

> and

> if others have stayed on this

> since it was working and not

> advanced to other drugs?

>

> We go to Nemour's Clinic

> again in July.

>

> thanks for this group!

> We find very interesting reads

> and people here.

>

> God bless you!

> Momma Lori

>

[Guest guest]

You really don't have to be that scared to go on methotrexate. Taking folic

acid will minimize some of the symptoms you worry about. I have been taking

it for a few years now and although I was afraid to go on it I have found it

isn't that big a deal. I take it by injection now.

Gareeth

[Guest guest]

: I haven't taken MTX - went straight to Enbrel; but from what I read

here, most of the things you're talking about in terms of side effects can be

avoided or they lesson over time; but I can just about guarantee you that most

docs will tell you that the side effects of being on prednisone long term make

it just about the worse option you can choose. Short-term, " emergency " type use

that's carefully controlled is OK; but long term use of prednisone can really do

permanent damage to your body in so many ways. There are definitely better

options.

Joanna Hoelscher

[Guest guest]

- Not everyone gets the side effects mentioned from the MTX. In fact I

think that the majority of the people on MTX don't have any. Like Gareeth said,

taking folic acid really helps. I personally would be more scared to be on the

prednisone long term than the MTX.

[Guest guest]

I too was on Prednisone for about a year. During that time I gained 45 pounds

and swelling in my ankles remained bad. I asked my rheumy to take me off it and

I decided to try Arava. This drug has been a Godsend to me. I lost the weight,

lost the swelling and my pain levels have gone down. I take a prescribed pain

killer, but I very seldom need it.

Keep in mind that you must taper off prednisone as your doctor tells you, but

give Arava some thought

Walt

[Guest guest]

, I spent about two years on Prednisone while the docs were trying to

figure things out and then they forced me off. Please listen to them. I have had

a hip replaced and have lost half of my left wrist to this disease. I have

ostoporosis also and would suggest that you get a DEXA scan to see what the

Prednisone has done to your bones. The docs aren't fooling when they tell you

that long term prednisone is worse that the side effects that you probably won't

experience with other meds. You may find that you might progress to a biologic

rather quickly and quite a few of us get much better relief with the biologics

and Methotrexate. I am just on Enbrel presently and doing reasonably well. Good

luck.

" wiltuck46 " <wilson.don@...>

[Guest guest]

Hi ,

Ditto what others have said. Prednisone is a short term solution that does

NOTHING to address your disease it ONLY addresses the symptoms. MTX is a long

term solution that addresses the DISEASE and in turn the symptoms should lessen.

While I understand your concern, You have been taking Prednisone for over a

year. That would cause me WAY more concern than the " possible " side effects of

MTX.

I have been on MTX for over 6 years and never experienced a side effect!! I too

had concerns, but when I could barely walk, had multiple sausage fingers & toes,

nearly every joint hurt, didn't sleep much.... Well, I was willing to try most

anything. I hope you don't need to get to that point.

Today, I am 99% normal.

You should be concerned, you should ask questions, but you should NOT be scared.

I tend to think of things as " What's the worst case scenario? "

For you, try MTX. IF you start to experience side effects, there is nothing that

says you MUST continue taking it. STOP. Any possible side effects are only

possible While you continue taking the drug. I don't recall Ever seeing anyone

stating that they continued to have side effects even after they stopped taking

MTX. So your risk is minimized.

Stay Well,

[Guest guest]

I was on methotrexate for 7 years and thought my liver was fine too. It

isn't I have liver damage. It is a powerful drug and can destroy your

liver without you even knowing it. cathy from ma

[Guest guest]

Yes methotrexate can be as dangerous as prednisone. It also causes

brittle bones and It can totally hurt your liver. I do not drink

either and had to have 3 hip replacements. cathy from ma totally

[Guest guest]

Well of course it can. Which is why we get blood tests every months.

Arthritis is a powerful disease. It needs powerful meds to get it under

control.

Gareeth

pretzelb3@... wrote:

> I was on methotrexate for 7 years and thought my liver was fine too.

> It isn't I have liver damage. It is a powerful drug and can destroy

> your liver without you even knowing it. cathy from ma

[Guest guest]

Hi I was reading what you had on here. And 24 hours I suffer with arthritis.

Nothing seems to help me that the gave give me. Seem the more pills one takes

the more toxin in the body. I do know I didn't need diabetes from all the the

arthritis I have all threw me. When the doctor gave me prednisone, I became

full blown diabetes big time. My sister call me and asked me what I was on and I

told her. She said stop this medication right now. But being on it short time I

ended up with diabetes type 2. So this add another slam for my body to fight

with for the rest of my life. angel3_04607 MAINE

[Guest guest]

Walt what is the sign effects on ARAVA for arthritis And what type do you

have?

" angel3_04607 " <angel3_04607@...>

[Guest guest]

Angel: the quickest way to find out about side effects on any of these drugs is

to just do a web search. Type in Arava and you will find info from the mfg and

from other reliable websites. WebMD is one I particularly like because it gives

me enough detail but in language I can understand.

I have learned a lot of practical info from the participants in this support

group but you owe it to yourself to research this disease and treatment options

independently. Every one of us reacts differently to the various drugs that are

available to treat PsA so what one person tells you could be totally different

from the next. Doing your own research is the only way you can become an active

participant/partner with your rheumy in managing your disease.

FYI:: when I was first diagnosed, I had major concerns about Enbrel - which is

what my rheumatologist reccommended. If you read the side effects, they are

very scary. However, they are also relatively rare. So, I asked for advice

from both my internist and my orthopedist and both agreed with my rheumy that

of the three classes of drugs you could take (steroids like prednisone, MTX or

TNF blockers - which included Enbrel), they both agreed with my rheumy that a

TNF blocker like Enbrel was the best option, though I know MTX works for some

and is far cheaper. My docs thought the TNF blockers worked more quickly and

effectively and - overall - had fewer side effects.

The main thing is to take something that actually stops the progression of the

disease rather than just masks it's symptoms, as does prednisone. I'm very

surprised your doctor kept you on it for so long without trying something else,

though I don't know your history and why he chose this route. It seems that

most docs use it sparingly and only during the worst kind of flare, when nothing

else helps. (You might want to check out both short and long-term effects of

prednisone as part of your research. The long-term effects can be significant,

such as the avascular necrosis which someone has just sent out a query about.)

Joanna Hoelscher

[Guest guest]

I can be brilliant without hardly taking an anti-inflammatory then I can feel

stiff in certain joints. i had a pain in my hip it went for three months and

came back. If I sit down for a while I am sore when I get up but then I can

walk for miles.

My right shoulder is the worst right now. Fingers and toes good. Feet grand,

hip good for a few days with anti-inflammatory but shoulder annoying.

Dermot Brennan <diarmaidobraonain@...>

[Guest guest]

Hi ,

What happened? Please Share. I was told that as long as I have regular blood

work every 2 months and a liver biopsy every 3-4 years, that my liver functions

would be monitored adequately. Was this not true for you? Please let me know

more about your situation. As someone who has been on MTX for over 6 years, you

have raised my concern level.

Stay Well.

[Guest guest]

I just read a medical paper that stated that the methotrexate helps delay the

body's production of antibodies against the biologics (Enbrel, Humira, etc.)

That convinced me to stay on the methotrexate, although I too dislike the side

effects. (I'm also on Humira, folic acid, Mobic for the arthritis.)

Dena

[Guest guest]

My body responded better to sulfasalazine many years ago.  Methotrexate just

made me sick. My BIG help these days is Enbrel.  I've found the herb cat's

claw helps my Enbrel. 

Psoriatic arthritis is a spondyloarthropy and I've found lots of good

information at the Spondylitis Association.

http://www.spondylitis.org/press/news/206.aspx

on methotrexate. 

http://www.spondylitis.org/about/medications.aspx 

on other medications.

Janette <janettemorgan@...>

[Guest guest]

I went to the health food place and they had ideas on how to help with the pain

and fatigue. We have a natural vitamin store and the lady there told me that

drinking milk is bad for people with PsA, and she had other ides on what kind of

herbs and vitamins to take. I also gave her a list of the pills I was on so they

wouldn't interfere with each other. Hope it helps, I am also on the methotrexate

and it doesn't do anything to make me feel better. good luck.

Sue Kaminsky <skaykam48@...>

[Guest guest]

The Methotrexate keeps the body from fighting the biologics that you are taking.

I have blood work every 6 weeks when I get my infusion of Remicade. I was

getting blood work done every 8 weeks with infusion but they decreased the weeks

for my infusion and I always get it done together. The MTX makes me sick so I

have to take meds for that to so I won't start vomiting. I been on it for 3 1/2

yrs now and don't see stopping it in my future. I see a rheumy at UNC Hospital

in Chapel hill, N.C. and she is great.

" skinnc71 " <skinnc71@...>

[Guest guest]

Just found this on the group's site:

http://www.medicalnewstoday.com/articles/172611.php

Thought you'd like this part:  Wei Wei, from Anhui Medical University, China,

worked with a team of

researchers to test the novel treatment by comparing it to the

established anti-rheumatic drug methotrexate, in 503 RA patients.

Patients who received a 12-week course of CCII capsules showed

significantly improved joint function, with fewer and milder adverse

effects than those taking methotrexate.

Janette <janettemorgan@...>

[Guest guest]

A lot of people find it worth taking. For me I have not found it so yet and

I am a little fed up with my rheumatologist for not trying something else

after all these years. When I took it orally I would get fairly bad stomach

issues with it. I still have a day of some stomach cramping and loose stool

taking it as a shot but not anything as bad as I did taking it orally. It

does leech off folic acid in your body so it is important you take folic

acid or you can wind up with problems related to that. I have not had any of

those issues though.

Gareeth

janeemeney wrote:

<<Does anyone else take this medication, how do you find it, does it

caue any problems , is it worth taking>>

[Guest guest]

I have read that taking the MTX lessens the chances of antibodies building up to

the biologics.(in my case Humira) so that is why I continue to take it. I know

a preteen with rheumatic arthritis who takes my same dose of MTX (20 mg/wk) and

she doesn't have any side effects. Me...a different story...nausea, diarrhea,

extreme-extreme fatigue, light sensitivity and killer headaches for two days

each time I take it. Has it helped my arthritis? Yes, the combination of

Humira and MTX has improved pain and function by about 50%, but the side effects

are a major trade off.

Dena

www.arthritisBAM.blogspot.com