Methotrexate

September 21, 2004

--let me know if I can help in anyway, I wonder if you called the

place I get Nicks from they might be able to fill Carolines' script??

Hugs Helen and (7,systemic)

- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> Wow Helen. That is awesome! I may be heading up your way if I

can't find any

> here in the cities! We were lucky and the hospital has a little

left. They

> were able to give us enough for her next 5 shots. They even put

them in

> pre-filled syringes. Very handy!

>

> The shots are coming along. Right now we have a friend of ours who

is a

> nurse giving them. Alan watches her baby every afternoon for them

so when

> she picks her up on Wednesday's and Friday's she just gives

Caroline her

> shots. She still cries and throws a fit, but I believe that one

day it will

> get better!!! She isn't handling the Prednisone taper that great,

but we

> added Ibuprofen after her last visit and I can tell its making a

> difference...

>

> Take care...

>

> Alia and Caroline, age 2, poly and uveitis

>

> Re: Methotrexate

>

> -Alia,,

>

> Last month Walgreens couldnt find any of the MTX with preserative

> for us either and ordered in 4 vials of the single use stuff but

> VERY kindly only charged me what I pay for the one vial of multi

use

> stuff as they know I was paying out of pocket for it. I thought

that

> was very kind of them.

>

> Since the methotrexate is now covered under our " major medical "

and

> we dont pay anything for it. I have to send the RX to the drug

> company that has our account and they ship it to me. Just last

week

> i received a 10ml vial for multi dose use which should last me a

few

> months, it comes from Zanodyne. They are based in KY, perhaps you

> can get in touch with them and see if its available anywhere here??

>

> How Miss C doing with her MTX and enbrel injections??? hows she

> doing with the decrease in meds???

>

> Hugs Helen and (7,systemic)

>

> -- In , Arthurnator@w... wrote:

> > Hi Alia,

> > I first heard of this a few months ago mayby longer.Our pharmacy

> hadn't heard

> > of this but they had enough on hand to get through the

last

> of the

> > taper.Over the years I have had MTX made by a few differant

> companies the latest

> > and longest being Zanodyne.

> > The only advice I can offer is for your rheumy to prescribe 4

> vials of MTX

> > preservative free to cover the month.Before our drug company

> switched to Express

> > Scripts I still had the same co-pay if it was 1 vial a month or

4.

> > Good luck finding the preservative free,s had both types

and

> he prefered

> > with preservative and you had the luxury of multiple doses.

> > Hugs

> > Becki and 6 systemic

> >

September 21, 2004

I will. Thanks so much Helen!

Alia and Caroline, age 2, poly and uveitis

Re: Methotrexate

>

> -Alia,,

>

> Last month Walgreens couldnt find any of the MTX with preserative

> for us either and ordered in 4 vials of the single use stuff but

> VERY kindly only charged me what I pay for the one vial of multi

use

> stuff as they know I was paying out of pocket for it. I thought

that

> was very kind of them.

>

> Since the methotrexate is now covered under our " major medical "

and

> we dont pay anything for it. I have to send the RX to the drug

> company that has our account and they ship it to me. Just last

week

> i received a 10ml vial for multi dose use which should last me a

few

> months, it comes from Zanodyne. They are based in KY, perhaps you

> can get in touch with them and see if its available anywhere here??

>

> How Miss C doing with her MTX and enbrel injections??? hows she

> doing with the decrease in meds???

>

> Hugs Helen and (7,systemic)

>

> -- In , Arthurnator@w... wrote:

> > Hi Alia,

> > I first heard of this a few months ago mayby longer.Our pharmacy

> hadn't heard

> > of this but they had enough on hand to get through the

last

> of the

> > taper.Over the years I have had MTX made by a few differant

> companies the latest

> > and longest being Zanodyne.

> > The only advice I can offer is for your rheumy to prescribe 4

> vials of MTX

> > preservative free to cover the month.Before our drug company

> switched to Express

> > Scripts I still had the same co-pay if it was 1 vial a month or

4.

> > Good luck finding the preservative free,s had both types

and

> he prefered

> > with preservative and you had the luxury of multiple doses.

> > Hugs

> > Becki and 6 systemic

> >

September 21, 2004

Hi all,

Acoarding to Cincinnati Childrens somebody has stoped makeing injectable

MTX,they are having a hard time getting any at all ,not just with preservative.

I was able to get our pharmacies last vial but it's preservative free and a

huge 10ml 250mg vial,lol luckily they called whoever and can get more,only

preservative free but they can get 2ml vials.

Hugs

Becki and 6 systemic

September 22, 2004

Hi Alia,

If you mean will switching to pills be less effective then shots then it's

just hard to say.There is so much controversy over that subject.Some research

says shots are better some research says there is no differance.

Cincinnati wanted to put on pills but his tummy just couldn't handle

them.I want so bad to put the injectable in s drink because he never had

tummy trouble that route but afraid he might not respond as well.See,the old

thinking that shots are better then oral. just bawled yesterday when we had

our talk and explained what was happening and why he had to go back to takeing

the yellow shots.

I guess I should be grateful that Bi Lo can get preservative free MTX even

though it's hard on my checkbook.I just hate throwing those barely used vials in

the trash.

I hope you can find some and better yet some company picks up the slack and

soon.

Hugs

Becki and 6 systemic

September 22, 2004

It's what 's doctor told us to do for her!

Diane (, 5, pauci, iritis)

September 22, 2004

This is not good news! Caroline's doc. said that if this does happen that we

will have to switch to tablets and then crush them. Does anyone know if we

lost any effectiveness with this method??

Alia and Caroline, age 2, poly and uveitis

Re: Methotrexate

Hi all,

Acoarding to Cincinnati Childrens somebody has stoped makeing injectable

MTX,they are having a hard time getting any at all ,not just with

preservative.

I was able to get our pharmacies last vial but it's preservative free and a

huge 10ml 250mg vial,lol luckily they called whoever and can get more,only

preservative free but they can get 2ml vials.

Hugs

Becki and 6 systemic

September 22, 2004

Hi! I am new to this and not even sure if I am responding

correctly. I have only posted one message. I tried to send another

and for some reason it did not go through.

Anyway, my three year old son has just been put on Methotrexate. He

takes three pills. The doctor offered the liquid method but chose

the pills. He did not say that one way was more effective than the

other. We just put the pills in a little container then crush them up

with the " handle " end of a knife. We then add a little applesauce

and give it to him with the applesauce. We do not really mix it up

because I want to see that he is getting all of it. Both Dr. and

Pharm. said it was O.K. to give with applesauce.

Christi and Logan, age 3, systemic

> This is not good news! Caroline's doc. said that if this does

happen that we

> will have to switch to tablets and then crush them. Does anyone

know if we

> lost any effectiveness with this method??

>

> Alia and Caroline, age 2, poly and uveitis

>

> Re: Methotrexate

>

> Hi all,

> Acoarding to Cincinnati Childrens somebody has stoped makeing

injectable

> MTX,they are having a hard time getting any at all ,not just with

> preservative.

> I was able to get our pharmacies last vial but it's preservative

free and a

> huge 10ml 250mg vial,lol luckily they called whoever and can get

more,only

> preservative free but they can get 2ml vials.

> Hugs

> Becki and 6 systemic

>

September 22, 2004

What's the deal here again with the mtx. vial size and preservative

issue? We have always gotten a 10ml vial that we get 10 shots out

of (1ml each) and we store it at room temp. I'm assuming that this

has preservative in it. Is that the issue, that some people are

allergic to the preservative?

Stacia and Hunter 8 systemic, iritis

> Hi Alia,

> If you mean will switching to pills be less effective then shots

then it's

> just hard to say.There is so much controversy over that

subject.Some research

> says shots are better some research says there is no differance.

> Cincinnati wanted to put on pills but his tummy just

couldn't handle

> them.I want so bad to put the injectable in s drink because

he never had

> tummy trouble that route but afraid he might not respond as

well.See,the old

> thinking that shots are better then oral. just bawled

yesterday when we had

> our talk and explained what was happening and why he had to go

back to takeing

> the yellow shots.

> I guess I should be grateful that Bi Lo can get preservative free

MTX even

> though it's hard on my checkbook.I just hate throwing those barely

used vials in

> the trash.

> I hope you can find some and better yet some company picks up the

slack and

> soon.

> Hugs

> Becki and 6 systemic

>

September 22, 2004

-Stacia...

Theres 2 different types of MTX vails...

One is a single use vial ( preservative free) that you can only use

1 time.

The other is a multi use vial ( WITH preservative) that you can use

over and over.

Both types come in various sizes. I think the confusion is that it

is getting hard in some areas to get the multi use vial. And now it

seems that it might be hard to find either kind.

Our pharmacy had a hard time getting the multi use vial last month

and instead got me 4 single use vials that I had to throw away after

one use. Thankfully, with our medical providing the MTX now I just

received a 10ml bottle that will last 3 months. ( Nick is on 17.5mg)

I hope this is just a temp shortage....

Hope this helps

Hugs Helen and (7,systemic)

-- In , " staciar101 " <staciar@c...> wrote:

> What's the deal here again with the mtx. vial size and

preservative

> issue? We have always gotten a 10ml vial that we get 10 shots out

> of (1ml each) and we store it at room temp. I'm assuming that

this

> has preservative in it. Is that the issue, that some people are

> allergic to the preservative?

>

> Stacia and Hunter 8 systemic, iritis

>

> > Hi Alia,

> > If you mean will switching to pills be less effective then shots

> then it's

> > just hard to say.There is so much controversy over that

> subject.Some research

> > says shots are better some research says there is no differance.

> > Cincinnati wanted to put on pills but his tummy just

> couldn't handle

> > them.I want so bad to put the injectable in s drink because

> he never had

> > tummy trouble that route but afraid he might not respond as

> well.See,the old

> > thinking that shots are better then oral. just bawled

> yesterday when we had

> > our talk and explained what was happening and why he had to go

> back to takeing

> > the yellow shots.

> > I guess I should be grateful that Bi Lo can get preservative

free

> MTX even

> > though it's hard on my checkbook.I just hate throwing those

barely

> used vials in

> > the trash.

> > I hope you can find some and better yet some company picks up

the

> slack and

> > soon.

> > Hugs

> > Becki and 6 systemic

> >

September 23, 2004

To my knowledge, and in our rheumy's opinion, injectable mtx is a

little bit more effective than oral(pills). However, the difference

is not very big. I think it's based on the fact that taken orally,

any med works a bit slower and doesn't absorb as well. My son takes

oral mtx and it does seem to work well on him. The main reason to

switching oral mtx to injections is nausea the pills are causing. It

makes sense that if the kid tends to throw up, the pills don't work

that well. If there's no big nausea problem, I wouldn't worry as long

as there's some form of mtx available.

It is funny, though, that we have all mtx we need here, but are very

short on Enbrel and Remicade.

Soili

September 24, 2004

Christi - Hi, we have a 6 year old who is systemic, Hunter. She takes the

MTX in pill form and we also crush it and put it in yogurt, pudding and ice

cream. We do the same and don't crush it to much. But I wish now we had

started

with the liquid - I still worry that she doesn't get the full amount with

mixing it with food. Sandi Ken Hunter (systemic 6)

October 18, 2004

Hi Tamara...

I do experience drowsiness (sometimes worse than at other times ~ I don't know

why) and occassional headaches. I also seem a little MORE " out of it " ~ rather

spacy, but not dizzy, than I used to be. Yikes, if you knew me before you'd

know that's a rather scary thought.

Anyway, hope that helps. In the beginning I took the MTX with Remicade and it's

my understanding that the remicade is the one that worked very quickly ~ and

that MTX takes a little while to begin to help ~ 6 weeks is what my doctor told

me.

Anyway, hope the side-effects subside and the drug helps!

(Idaho)

Tamara <artfulmindless@...> wrote:

Hi All,

Just a quick question, I haven't gotten to try many drugs for my P or

PA due to wanting to have my babies as med free as possible. But, in

the meantime, I have become about 80% covered with the P and my PA is

flaring badly. Doctor started me on Methotrexate and I took my first

dose on Friday. I didn't know what to expect, but basically, it took

me out for about 2 days. I was very dizzy, drowsy, and sick to my

stomach. Is this the norm?

Tamara

October 19, 2004

Thanks so much for the info. Sounds like what I experienced is

pretty norm, if there is a norm. I was just hoping it would get

easier as I have 4 small children at home, but my ins. requires I try

this before any biologics.

Thanks,

Tamara

>

> Hi Tamara...

>

> I do experience drowsiness (sometimes worse than at other times ~ I

don't know why) and occassional headaches. I also seem a little

MORE " out of it " ~ rather spacy, but not dizzy, than I used to be.

Yikes, if you knew me before you'd know that's a rather scary

thought.

>

> Anyway, hope that helps. In the beginning I took the MTX with

Remicade and it's my understanding that the remicade is the one that

worked very quickly ~ and that MTX takes a little while to begin to

help ~ 6 weeks is what my doctor told me.

>

> Anyway, hope the side-effects subside and the drug helps!

>

> (Idaho)

October 19, 2004

>

> Hi All,

>

> Just a quick question, I haven't gotten to try many drugs for my P or

> PA due to wanting to have my babies as med free as possible. But, in

> the meantime, I have become about 80% covered with the P and my PA is

> flaring badly. Doctor started me on Methotrexate and I took my first

> dose on Friday. I didn't know what to expect, but basically, it took

> me out for about 2 days. I was very dizzy, drowsy, and sick to my

> stomach. Is this the norm?

>

> Tamara

Tamara,

My nausea wasn't subsiding after a few months on MTX pills so my

doctor switched me to injection. I felt the same way when I first

started the injections but my body adjusted after a few months. Now I

just feel tired 12 to 24 hours after my dose. I didn't ever have

dizziness. My joints and skin showed slight improvement at 4 weeks,

great improvement at 6 weeks.

Feel Better, Ellen

October 19, 2004

--- Tamara <artfulmindless@...> wrote:

Does it lessen with more doses?

Well, sort of. My body seems to adjust to the dose

after three or four weeks. But as soon as I get used

to it, the doc increases my dose. Such is our life.

<sigh>

--

=====

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

Stein

www.noblefusion.com/astein

If you're tired of fighting battles with yourself

If you want to be somebody else

Change your mind...

-- Sister Hazel

__________________________________________________

October 19, 2004

Hi Tamara~

It's so wrong that the insurance compaines are controlling patient treatment

plans ~ and in this case, preventing doctors from giving the most aggressive

treatment which most of the doctors admit is much better for the patient ~ the

less the joints are inflamed, the better the long term outlook (in terms of

permanant damage and remission)... Darn them!

Anyway, what is the dosage you are taking of mtx? For me, the tiredness and

headaches have not gotten better over time ~ just some weeks are better than

others, but none are unbearable for me, but I also only take 7.5mg a week (3

pills)...

Warm wishes,

(Idaho)

October 20, 2004

Oh ,

Do I hear you! I work for the insurance company!!!! It sucks that I

am required to take the methotrexate before taking a potentially

safer drug because of cost. I am on 5 pills a week, I think like

20.something. I took my first dose friday. I am researching now to

see how long I am going to have to take the methotrexate before the

ins co feels I have given it the old college try. We shall see.

Tamara

>

> Hi Tamara~

>

> It's so wrong that the insurance compaines are controlling patient

treatment plans ~ and in this case, preventing doctors from giving

the most aggressive treatment which most of the doctors admit is much

better for the patient ~ the less the joints are inflamed, the better

the long term outlook (in terms of permanant damage and

remission)... Darn them!

>

> Anyway, what is the dosage you are taking of mtx? For me, the

tiredness and headaches have not gotten better over time ~ just some

weeks are better than others, but none are unbearable for me, but I

also only take 7.5mg a week (3 pills)...

>

> Warm wishes,

>

> (Idaho)

October 24, 2004

Hi Tamara,

I don't know what is the norm for taking MTX but I didn't really have any of

the reactions you mentioned although since they added Ciclosporin to the mix

I always feel sick and have actually been sick a couple of times.

Take care,

November 15, 2004

CC, I can only tell you how mtx worked out for me. I don't remember the dosage

towards the end but it was high. I never lost hair until I went on Arava and

the symptoms I got from mtx didn't get worse as the dosage went up. For me they

were awful from day one until I had to quit because the highest dose was not

working. I'm sorry your insurance company limits your Remicade. I know it is

frustrating and I hope you find a solution. Best wishes, Cheri

Chuck Currie <ccurrie@...> wrote:

I'm sure someone has asked this question before so please forgive the

repetition.

My dosage of methotrexate has gone up from 10 mg each week to 20 mg. What

are the most common side effects people experience at this level?

Without warning my health insurance company recently cut back on the number

of Humira treatments they are willing to pay for. My doctor increased the

methotrexate to help compensate while we fight to get back all the needed

Humira treatments.

One of the listed side effects is hair loss. Does that actually happen at

20 mg or is that only at higher dosages?

Any feedback people have would be appreciated.

Best wishes,

CC

****

Chuck Currie

233 Spring Avenue

Webster Groves, MO 63119

314-963-0496

<http://www.chuckandliz.com> www.chuckandliz.com

November 15, 2004

hi chuck,

I take mtx 20mg a week...when i'm not on an anti-biotic which i have

been on several in the last two months so haven't been able to take it.

I experience some tiredness the next day after taking it. I will say

that I can tell a difference of having to be off of it versus on it.

The reason I'm not taking it when on anti-biotics is that the two drugs

conteract each other...the anti-biotic won't work.

I understand the frustration of what insurance will and will not pay

for. I hope you can get the Humira treatments you need. Good luck!

Carla

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.792 / Virus Database: 536 - Release Date: 11/9/2004

November 15, 2004

MTX doesn't work at all for me until 40mg once a week. My docs have forced me to

reduce it to 25mg at the moment and I have P all over my face and through my

hair, shoulders and chest and back. I am not sleeping at all because of the

joint pain and have spent the last 3 weeks in agony barely getting out of bed to

get to the toilet (in fact, there have been times when I haven't made it!).

The only alternative I have been given was prednisolone and that gave me

diabetes. It worked wonderfully. But now the diabetes complicates my treatment

for PA. My local doctor said re3cently, " No-one ever died from joint pain, but

they do die from kidney and liver damage. " It just shows how very little he

knows. The joint pain can drive a person to suicide. My has the keys already.

Greg.

Re: [ ] methotrexate

Hi, Chuck. I just ramped up to 20 mg of methotrexate

about two months ago. (I moved up slowly over a six

month period.)

When I hit 20 mg, I found I was not " bouncing back "

after a few weeks like I had on lesser doses. My

symptoms include multiple mouth ulcers that simply

won't heal, exhaustion, irritability, insomnia, and

lack of appetite. I also have a craving for bread --

which I gave up months ago to reduce the gluten in my

diet. The doc's nurse said " ride it out " . Argh.

I also entered a major flare. I don't know if it was

because of the MTX, or in spite of it. It could have

been triggered by bronchitis, my flu shot, the change

in weather, or the bread. No clue.

Anyway, here's how I'm compensating:

1) plenty of fluids (H20 and Gatorade)

2) plenty of folic acid and B vitamins (Foltx /Folbee

tablets by prescription -- a mega dose combo of Folic

Acid, B6 and B12) will help with fatigue and reduce

the possibility of hair loss.

3) plenty of rest / sleep

4) plenty of lean protein, raw fruits, and fresh or

frozen veggies (Yeah, I know -- hard to find unless

you cook it yourself.)

The Folbee tablet does wonders for me. My hair is

actually fuller and longer, and my nails don't crack

and peel anymore.

Good luck and hang in there.

--

November 15, 2004

Dear Greg, Well I hope you are joking about the suicide. Unfortunately

I've felt that way myself when the pain was too bad, so I have a hard time

ignoring it when someone mentions it. First of all, I would find a doctor

that understand about pain. It sounds like you need pain management or at

least a rheumatologist with a heart or a soul. It might be true that no one

dies directly from joint pain, but it sure can make your life not worth

living when the pain is bad. I would have been tempted to ask him, when was

his last flare and how many joints are affected now? He sounds like a real

jerk. Believe me, I've seen a million jerks...I think the ratio is

something like 5 to 1, but when you find that one doctor it's worth all the

hassle and trouble.

If you find a pain doctor, but can't get in right away, I would consider

going to the ER for a pain shot. Sometimes they will give you something to

stop the pain and even if you break the cycle for a few hours, you can get

yourself under control and able to deal with it when it comes back. Before

I was in pain management I went to the ER several times, due to my jaw being

almost destroyed by arthritis. It caused and still does cause chronic

facial pain and muscle spasms. When my pain started spreading that's when I

realized I had something else going on. I have a lot of pain now in my hip,

knee, back, neck, hands and even my feet. I think I just named the whole

body! I have no doubt I wouldn't be here today without pain management. So

please try to get your pain under control. Then you can start to deal with

all the other problems. Just don't give up!

It is true that prednisone or the other type you took is hard on us. I've

been on it for almost 3 years now, and finally got down to 10mg a day. I

managed to stay there about 1 month and went into a major flare, so I just

increased it to 15mg. I saw my rheumatologist today and he still wants it

lower, but he understands that I can't walk without it. I also take Arava

and that has helped me tremendously. Before Arava I was almost bedridden,

but now I'm up most of the day, even if I still have trouble walking or

doing much of anything.

There are so many new drugs out there that I can't believe your doctor isn't

willing to try some of the newer drugs besides MTX. He needs a new PDR it

sounds like to me. I'm lucky that I don't have the psoriasis very bad, but

I do have a lot of joint pain. I also suffer with fibromyalgia,

erythromelalgia, asthma, IBS, TMJ, edema, spinal stenosis, and PA. If I

can find a great doctor to control my pain, you should be able to as well.

I just know there has to be a doctor out there who can help you. By the

way, you can find a pain doctor in your area by looking up the American

Academy of Pain Management. http://www.aapainmanage.org/

They can help you find a doctor in your area. There are many others, but I

know this one is sponsored by the American Medical Society.

Let me know how you are doing and I hope by now things have let up some. I

understand about limping to the bathroom. There were mornings when I didn't

make it either. Hang in there. Things can and usually do get better. Let

me know if I can help in anyway. Love, Fran

Re: [ ] methotrexate

MTX doesn't work at all for me until 40mg once a week. My docs have forced

me to reduce it to 25mg at the moment and I have P all over my face and

through my hair, shoulders and chest and back. I am not sleeping at all

because of the joint pain and have spent the last 3 weeks in agony barely

getting out of bed to get to the toilet (in fact, there have been times when

I haven't made it!).

The only alternative I have been given was prednisolone and that gave me

diabetes. It worked wonderfully. But now the diabetes complicates my

treatment for PA. My local doctor said re3cently, " No-one ever died from

joint pain, but they do die from kidney and liver damage. " It just shows how

very little he knows. The joint pain can drive a person to suicide. My has

the keys already.

Greg.

November 15, 2004

Greg,

I feel so badly for you, reading your post, and my heart goes out to

you...

Have you tried any of the biologics, such as Enbrel, Remicade,

Humira? What about gold? There must be something in the arthritis

arsenal that can help.

On another line, is your rheumy supportive, and if not, do you have

the option of seeking out the help of a new one? Please don't give

up hope, Greg, (and please put those keys away).....

I am sending you as many positive vibes as I can.

(near Vancouver, BC Canada)

>

> MTX doesn't work at all for me until 40mg once a week. My docs

have forced me to reduce it to 25mg at the moment and I have P all

over my face and through my hair, shoulders and chest and back. I am

not sleeping at all because of the joint pain and have spent the

last 3 weeks in agony barely getting out of bed to get to the toilet

(in fact, there have been times when I haven't made it!).

>

> The only alternative I have been given was prednisolone and that

gave me diabetes. It worked wonderfully. But now the diabetes

complicates my treatment for PA. My local doctor said re3cently, " No-

one ever died from joint pain, but they do die from kidney and liver

damage. " It just shows how very little he knows. The joint pain can

drive a person to suicide. My has the keys already.

>

> Greg.

November 15, 2004

Thanks Fran. I am in Australia and here dermatologidtd don't treat PA at all -

only rheumatologists do and a good one is as rare as hen's teeth.

All those new drugs you mention ? Well, they are not available in Australia.

Enbrel has just been approved but can only be given to people with RA who show

more than a certain level of joint deterioration. It is not allowed for PA at

all.

I have been told several times to just put up with it - which isn't very

helpful. I wish I could find a decent rheumy in Melbourne. The only good one I

know is in North Queensland - over 3000 km away.

Thanks again. This group helps on the bad days - even if only to know that I'm

not the only one going through this.

Greg.

RE: [ ] Methotrexate