Re: MTX Non Preservative Question

[Guest guest]

Hi Sandy,

We too get the mtx vials and our daughter's dose is so small-0.3ml

that we waste the remainder of the 2ml in the vial. (Don't know if

this is the smaller vial or the larger vial you are referring too.)

We chose to start doing the injections at home because of the expense

of taking her to the office once a week to have it done. We did our

first last week-my husband had to do it because I just couldn't. Is

giving her the injections yourself an option for you?

Sorry I can't be of more help-but also interested in what the others

say about refrigerating a dose to use the next week.

Tracey (Madi-14mo systemic)

>

> Hi ya'll - hope everyone is doing great with the warming

tempartures. My

> questions is for many of the older sight members. We recently

stopped taking

> Hunter to the Hospital Oncology Department to get her MTX shot.

We were not

> pleased with some of the choices the department were making and

have chosen

> to hire a private nurse to give the shot at our home. Our

pharmacist has

> only been able to receive the non preservative MTX and it is in a

large vial.

> Isn't it possible to draw off one extra injection and keep it

refrigerated for

> one week? I thought I remembered reading this back when there was

a MTX

> shortage. Our insurance will not pay for the home care (even the

MTX). When we

> go to Atlanta in July - there is a pharmacy we went to before (two

years

> ago) that has the smaller vials - will go there and stock up.

Any advice would

> be appreciated. See you all in Atlanta. Sandi Ken and Hunter

> (Systemic/Asthmatic 7)

>

>

>

[Guest guest]

Hi Sandi,

Our experience was to draw out of each vile as many injections as we

could. (usually 3) Then we would store the (shots) in the frig and

use them up each week and then start over again with a new vile.

There was a mtx shortage during the time Aundrea was on it so we had

to look at every option to make it last. Our pharmacist and members

from this list told us about this option.

P.S. We would sit the shot out for an hour or so prior to giving it

so that it could warm up to room temp.

(Aundrea 10 systemic jra)

>

> Hi ya'll - hope everyone is doing great with the warming

tempartures. My

> questions is for many of the older sight members. We recently

stopped taking

> Hunter to the Hospital Oncology Department to get her MTX shot.

We were not

> pleased with some of the choices the department were making and

have chosen

> to hire a private nurse to give the shot at our home. Our

pharmacist has

> only been able to receive the non preservative MTX and it is in a

large vial.

> Isn't it possible to draw off one extra injection and keep it

refrigerated for

> one week? I thought I remembered reading this back when there

was a MTX

> shortage. Our insurance will not pay for the home care (even the

MTX). When we

> go to Atlanta in July - there is a pharmacy we went to before

(two years

> ago) that has the smaller vials - will go there and stock up.

Any advice would

> be appreciated. See you all in Atlanta. Sandi Ken and Hunter

> (Systemic/Asthmatic 7)

>

>

>

[Guest guest]

Sandi,

I will second what said. I would draw up as many sypringe

fulls as I could get out of a bottle, all at the same time and would

store then in the fridge and use one a week until they were gone. I

dont remember how many I would get out of a vail or how big the vail

was ( too many med changes over the years) I didnt even let them

warm up and Nick never complained.

I know giving an injection is scary, but have you thought of trying

it yourself now that Hunter is use to getting them. They really are

so simple to do. Try playing with an orange and injecting water into

it. I did this and so did Nick to get him familiar with the whole

idea. The 1st shot I thought I would throw up, but i got though it

and now its just so simple its no big deal. In fact I sometimes

inject nick while hes sitting at the table playing because he doesnt

want to stop. I lift up his shirt, wipe with the achohol and inject.

he doesnt even stop playing.

Good luck.

Hugs Helen and (8,systemic)

-- In , " sonia1md " <sonia1md@...> wrote:

>

> Hi Sandi,

>

> Our experience was to draw out of each vile as many injections as

we

> could. (usually 3) Then we would store the (shots) in the frig

and

> use them up each week and then start over again with a new vile.

> There was a mtx shortage during the time Aundrea was on it so we

had

> to look at every option to make it last. Our pharmacist and

members

> from this list told us about this option.

>

> P.S. We would sit the shot out for an hour or so prior to giving

it

> so that it could warm up to room temp.

>

> (Aundrea 10 systemic jra)

>

>

>

> >

> > Hi ya'll - hope everyone is doing great with the warming

> tempartures. My

> > questions is for many of the older sight members. We recently

> stopped taking

> > Hunter to the Hospital Oncology Department to get her MTX

shot.

> We were not

> > pleased with some of the choices the department were making and

> have chosen

> > to hire a private nurse to give the shot at our home. Our

> pharmacist has

> > only been able to receive the non preservative MTX and it is in

a

> large vial.

> > Isn't it possible to draw off one extra injection and keep it

> refrigerated for

> > one week? I thought I remembered reading this back when there

> was a MTX

> > shortage. Our insurance will not pay for the home care (even

the

> MTX). When we

> > go to Atlanta in July - there is a pharmacy we went to before

> (two years

> > ago) that has the smaller vials - will go there and stock up.

> Any advice would

> > be appreciated. See you all in Atlanta. Sandi Ken and Hunter

> > (Systemic/Asthmatic 7)

> >

> >

> >

[Guest guest]

We're supposed to be starting home injection of Bayly with Mtx.

Reading this, and the conflicting advice/information we've been given

from the Paed Rheumy, Chemist, local Paed, and Community Nurses IS

SCARING THE HELL OUTTA ME!

I don't want to do this at all.

Maybe fighting Bayly each week to take his tablets is safer for all?

Jo

Bayly, 4, extended oligo

> > >

> > > Hi ya'll - hope everyone is doing great with the warming

> > tempartures. My

> > > questions is for many of the older sight members. We recently

> > stopped taking

> > > Hunter to the Hospital Oncology Department to get her MTX shot.

> > We were not

> > > pleased with some of the choices the department were making and

> > have chosen

> > > to hire a private nurse to give the shot at our home. Our

> > pharmacist has

> > > only been able to receive the non preservative MTX and it is

in a

> > large vial.

> > > Isn't it possible to draw off one extra injection and keep it

> > refrigerated for

> > > one week? I thought I remembered reading this back when there

was

> > a MTX

> > > shortage. Our insurance will not pay for the home care (even

the

> > MTX). When we

> > > go to Atlanta in July - there is a pharmacy we went to before

(two

> > years

> > > ago) that has the smaller vials - will go there and stock up.

> > Any advice would

> > > be appreciated. See you all in Atlanta. Sandi Ken and Hunter

> > > (Systemic/Asthmatic 7)

> > >

> > >

> > >

[Guest guest]

Hi Jo,

We are newbies (well, about 2 months into the whole thing) and we are

currently giving our daughter mtx injections at home also. She is

almost 15mo old, and she's a trooper. We've noticed she's a lot

calmer with us giving it to her than going to the peds office and

having it done. So that's been a plus :-) What kind of conflicting

advice have you gotten from your rheumy and ped, etc? We weren't

told to begin with that we shouldn't re-use the vial so we did(we

used it orally to begin with), but have now started to use a new one

with each injection. Which part of the whole thing is scary-maybe as

newbies we are missing the boat!

Tracey

(Madi, 14 mo, systemic)

> > > >

> > > > Hi ya'll - hope everyone is doing great with the warming

> > > tempartures. My

> > > > questions is for many of the older sight members. We

recently

> > > stopped taking

> > > > Hunter to the Hospital Oncology Department to get her MTX

shot.

> > > We were not

> > > > pleased with some of the choices the department were making

and

> > > have chosen

> > > > to hire a private nurse to give the shot at our home. Our

> > > pharmacist has

> > > > only been able to receive the non preservative MTX and it is

> in a

> > > large vial.

> > > > Isn't it possible to draw off one extra injection and keep it

> > > refrigerated for

> > > > one week? I thought I remembered reading this back when

there

> was

> > > a MTX

> > > > shortage. Our insurance will not pay for the home care

(even

> the

> > > MTX). When we

> > > > go to Atlanta in July - there is a pharmacy we went to

before

> (two

> > > years

> > > > ago) that has the smaller vials - will go there and stock up.

> > > Any advice would

> > > > be appreciated. See you all in Atlanta. Sandi Ken and

Hunter

> > > > (Systemic/Asthmatic 7)

> > > >

> > > >

> > > >

[Guest guest]

Hi Tracey,

One of the other JIA mums whose daughter has injectable Mtx at the

hospital each week, says the nurses wear the whole head-to-toe-with-

gloves, and she's not allowed in the room even when her daughter has

the shots.

Our Paed Rheumy says the dosage kids have for Arthritis really isn't

that big or bad and not necessary to wear all that. One of the

Community Nurses from our local hospital says oh yeah ya gotta wear all

that, 'cause it's toxic and dangerous and all. Another nurse says we

shouldn't be doing it at home at all (and actually seemed to know

bugger-all about arthritis in children!)

The chemist/pharmacist said he'd do the initial couple of shots for us,

as he is also a RN, but then said it would be better getting it done at

the doctor's office...but Bayly's treating doctor at the hospital, says

he hasn't any experience of them doing them at the Paed Clinic Bayly

attends!

Add my hubby's needle-phobia-

See why I'm a tad worried?

J

> Hi Jo,

>

> We are newbies (well, about 2 months into the whole thing) and we are

> currently giving our daughter mtx injections at home also. She is

> almost 15mo old, and she's a trooper. We've noticed she's a lot

> calmer with us giving it to her than going to the peds office and

> having it done. So that's been a plus :-) What kind of conflicting

> advice have you gotten from your rheumy and ped, etc? We weren't

> told to begin with that we shouldn't re-use the vial so we did(we

> used it orally to begin with), but have now started to use a new one

> with each injection. Which part of the whole thing is scary-maybe as

> newbies we are missing the boat!

> Tracey

> (Madi, 14 mo, systemic)

[Guest guest]

Hi Jo,

Ok, I'll give you that, our nurse at the ped was scared to give our

daughter the shot-it's just not common in a pediatric setting-at

least here it's not. She read up on it and called our rheumy who

settled her fears. She in turn taught us how to give it to our

daughter (by the way, I couldn't give her the shot, my hubby has to

and I hold her down, sounds like you don't have that option). It is

very bad for a woman of childbearing age to come in contact with the

mtx-it causes birth defects, and those not used to working with chemo

don't want to take any chances. We however are done having kids so

that doesn't scare me, but I still wear gloves (that's it) for " just

in case. " I figure I'm injecting her, what harm can it be to me to

get it on my skin? (That goes for the pills too-I worked in pharmacy

for years and was told not to touch any chemo agents at all when I

was pregnant with my kids.) We had 2 friends from church-both nurses-

offer to give our daughter the injections. Do you have anybody else

who could help you other than your husband? Does Bayly's dr. want

you to inject him for better arthritis control, or are you just

having major issues with him getting it down in pill form? Good luck

and let us know what you decide and how it goes.

Tracey

Madi, 14mo, systemic

In , " Jo & Grant " <joking70@...> wrote:

>

> Hi Tracey,

> One of the other JIA mums whose daughter has injectable Mtx at the

> hospital each week, says the nurses wear the whole head-to-toe-with-

> gloves, and she's not allowed in the room even when her daughter

has

> the shots.

> Our Paed Rheumy says the dosage kids have for Arthritis really

isn't

> that big or bad and not necessary to wear all that. One of the

> Community Nurses from our local hospital says oh yeah ya gotta wear

all

> that, 'cause it's toxic and dangerous and all. Another nurse says

we

> shouldn't be doing it at home at all (and actually seemed to know

> bugger-all about arthritis in children!)

> The chemist/pharmacist said he'd do the initial couple of shots for

us,

> as he is also a RN, but then said it would be better getting it

done at

> the doctor's office...but Bayly's treating doctor at the hospital,

says

> he hasn't any experience of them doing them at the Paed Clinic

Bayly

> attends!

>

> Add my hubby's needle-phobia-

>

> See why I'm a tad worried?

> J

>

>

> > Hi Jo,

> >

> > We are newbies (well, about 2 months into the whole thing) and we

are

> > currently giving our daughter mtx injections at home also. She

is

> > almost 15mo old, and she's a trooper. We've noticed she's a lot

> > calmer with us giving it to her than going to the peds office and

> > having it done. So that's been a plus :-) What kind of

conflicting

> > advice have you gotten from your rheumy and ped, etc? We weren't

> > told to begin with that we shouldn't re-use the vial so we did(we

> > used it orally to begin with), but have now started to use a new

one

> > with each injection. Which part of the whole thing is scary-

maybe as

> > newbies we are missing the boat!

> > Tracey

> > (Madi, 14 mo, systemic)

>

[Guest guest]

-Jo,

I know you are torn and worried about injecting MTX. It is a tough

move for any parents to make.

Try to remember the good it will do Bayly. Think about all that it

will hopefully give him back. It can be such a wonderful drug and

while the side effects can scare anyone, the good it can do for your

little man far outweigh the negative.

It will become very routine after awhile. I do not wear gloves. I

just wipe the MTX bottle with a wipe, draw up the meds. stick the

covered end of the syringe in my teeth to hold it while i wipe

Nick's belly with another wipe. Wait a few seconds for it to dry,

pull out the needle from the cover in my mouth, stick and squirt.

Nick rubs his belly afterwards for a few seconds and goes on his

merry way.

Hang in there Jo... it will be fine.

hugs Helen and (8,systemic)

-- In , " Jo & Grant " <joking70@...> wrote:

>

> Hi Tracey,

> One of the other JIA mums whose daughter has injectable Mtx at the

> hospital each week, says the nurses wear the whole head-to-toe-

with-

> gloves, and she's not allowed in the room even when her daughter

has

> the shots.

> Our Paed Rheumy says the dosage kids have for Arthritis really

isn't

> that big or bad and not necessary to wear all that. One of the

> Community Nurses from our local hospital says oh yeah ya gotta

wear all

> that, 'cause it's toxic and dangerous and all. Another nurse says

we

> shouldn't be doing it at home at all (and actually seemed to know

> bugger-all about arthritis in children!)

> The chemist/pharmacist said he'd do the initial couple of shots

for us,

> as he is also a RN, but then said it would be better getting it

done at

> the doctor's office...but Bayly's treating doctor at the hospital,

says

> he hasn't any experience of them doing them at the Paed Clinic

Bayly

> attends!

>

> Add my hubby's needle-phobia-

>

> See why I'm a tad worried?

> J

>

>

> > Hi Jo,

> >

> > We are newbies (well, about 2 months into the whole thing) and

we are

> > currently giving our daughter mtx injections at home also. She

is

> > almost 15mo old, and she's a trooper. We've noticed she's a lot

> > calmer with us giving it to her than going to the peds office

and

> > having it done. So that's been a plus :-) What kind of

conflicting

> > advice have you gotten from your rheumy and ped, etc? We

weren't

> > told to begin with that we shouldn't re-use the vial so we did

(we

> > used it orally to begin with), but have now started to use a new

one

> > with each injection. Which part of the whole thing is scary-

maybe as

> > newbies we are missing the boat!

> > Tracey

> > (Madi, 14 mo, systemic)

>

[Guest guest]

Good Grief the very thought of that nasty MAS still lingering

around or trying to resurface nearly scares my socks off....Please

keep us posted on how the next pulmonary test goes. I will be

keeping her in my prayers!

sonia (aundrea 10 systemic jra)-

-- In , Price <bc.price@...> wrote:

>

> Hi AJ,

>

> n takes her mtx on Saturday nights, and the enbrel on Monday

and

> Thursdays.

>

> On another subject, I brought n to the pumonologist about

her

> cough. It is the remnants of the MAS, or the MAS trying to come

> back. The cough surfaced as we tapered the prednisone. She has

been

> given numerous pulmonary function tests and has failed all of

them.

> She was put on inhaled steroids and we have stopped the

prednisone

> taper until a more sophisticated pulmonary test is done on June

6th.

> She can't inhale or exhale the normal amount. (n, 17,

> systemic)

>

>

> On May 28, 2006, at 3:42 PM, ajaomom@... wrote:

>

> >

> > In a message dated 5/28/2006 6:37:11 P.M. Eastern Daylight Time,

> > hburger64@... writes:

> >

> > It will become very routine after awhile. I do not wear gloves.

I

> > just wipe the MTX bottle with a wipe, draw up the meds. stick

the

> > covered end of the syringe in my teeth to hold it while i wipe

> > Nick's belly with another wipe. Wait a few seconds for it to

dry,

> > pull out the needle from the cover in my mouth, stick and

squirt.

> > Nick rubs his belly afterwards for a few seconds and goes on his

> > merry way.

> >

> >

> >

> > HELEN,

> > Your directions are awesome!!! I wish someone could do

that

> > for me for

> > enbrel, lots of steps with that one. Kinda made me nervous.

She

> > had her

> > first injection last night. I do have a question

though......how

> > do you all

> > spread it out??? And do you give mtx the same day as the

> > enbrel?? Talk to

> > you soon!!!

> >

> > Luv and hugs,

> > Aj and Holly (12 yrs old, systemic jra since 9/94)

> > _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/

> > visit/holly)

> >

> >

> >

> >

> >