/Enbrel

[Guest guest]

Hi all,

Many of you newbies have no idea who me or are, but I can ramble on and

on and on.....

After 18 months of questioning Dr. Lovell at Cinci about increasing

's Enbrel to atleast the starting dose of .4mg per kilo he finaly did.Like

it was finaly his idea,lol The boy had been on the same starting dose from

barely 4 to barely 8.

Having one of the best and most notorious ped rheumies in the world has it's

pros and cons not to mention the Dr. that did the original trials of Enbrel on

kids,then add in if it's been studied on children he had something to do with

it.

He has always been by the book and his Enbrel excuse was always the FDA said

to do .4mg per kilo but as far as they knew .2mg per kilo worked just as

well.The first FDA aproval was to split the dose in half and give 2x a week.Then

you could give the whole dose in 1 shot but never give more then 1ml in the same

spot.Due to being in the 3 yr sfaety study we had to wait for permission.

Now they are doing studies and have kids taking 50mg of the 25mg vials all at

once.

It took 8 days to get the approval from the insurance company.Way longer then

when he first started and they called my crying saying he was approved.

I came right home before picking up the kids to check out these syringes.I

was so scared that it would be a fixed syringe.I had to do a happy dance when I

seen it was a removable BD Precision Glide.

The 3ml syringe is so much easier then the 1ml.You draw back and it pushes up

any air on it's own.There was never any air bubbles to get out.I took off the

26gauge 5/8 needle and put on his 27gauge 1/2 inch which is the recommended

norm and what he has had for 5 yrs,adding MTX into it.

One hour after Emla it was time.The idea was to just not let him see the

syringe.

The little stinker said " Aren't I getting a little more then I used to? " Daddy

and I told him he was right and with our fingers tried to show him how small

of an amount it was.He DEMANDED to see it and when he did he didn't like it.It

took a little convincing and he agreed.He did say he would rather get 2 shots

a week.

His little bottom lip started quivering and a single tear slid from each

eye.My heart sunck and I just wanted to grab him in my arms and smother him with

hugs and kisses.Unfortunately I had to go back 5 yrs ago when he was 3 and be

nurse not mommy,well 50/50 compromise.

He cried a soft cry the entire time.Anxiety and fear at it's best.Once it was

over and I left to give him his privacy, less then a minuite later he was

laughing and pretending to saw his daddy in half.

My biggest fear was that when I pushed the plunger it would just squirt in

him way too fast.Such a small amount in a big syringe.It turned out that there

was alot of resistance,especialy at first,but once it started it was no

differant then a 1ml syringe.

At times I can't believe we are doing this to see if if will get rid of some

harmless morning stiffness.s stiffness is at 6 am ,he runs straight from

his bed to the shower,kinda awkward but not much.We give it 2 months and if no

change back to just 25mg instead of the 32.5mg.A child or adult can be in

complete control,even remission and if the morning stiffness is less then 15

minuites it's normal and nothing to worry about.

's local rheumy wouldn't write a script for labs,just said it could be

done in 3 months when we drive to Cincinnati.Never gone 3 months before but

Lovell had no problem waiting a couple days and wrote us a script.

He had things on there that most of your kids get but with it was

always a simple CBS with diff,SGOP,SGOT (ALT,AST)and SED. and at our local

hospital

outpatiant lab was less the $60.

He added CRP,Bun,Creatnine,Liver Profile and urine.$160 but still less then

the originals done at the childrens hospital by $100.

It seems like I heard on TV that the CRP was a good,cheap heart test at $100

as far as inflimation is concerned.Blahhh I pay the first $500.

Hugs to all.

Becki and 8 systemic

[Guest guest]

Hi Becki

I am a long time member of the list but have not posted in a long time. Kids

getting older,

busier, - and I just kind of needed a break for a while. I tend to get lost in

time reading

the emails. My daughter Mickey is now 12, she's had systemic jra since she was

three.

She started Enbrel about mid June. Prior to that her right knee had been very

swollen with

effusions... (the size of a large grapefruit.. and she is tiny for 12) for about

6 months and

nothing was making a difference. She has had it injected directly so many times,

and it

used to really help but the last time the effussions returned quite quickly and

we really put

off doing it again so soon.

The day after her second injection she came running downstairs to show me her

knee... it

was half the size it had been. By the next day... the effussions were

completely gone.

I do have a question... we are thrilled for obvious reasons with the results of

the Enbrel -

but I have been doing some catch up reading... and I notice some of the kids

stop

responding after a while. Do you know what the typical signs of that are? Is it

what I'd

expect... a return of morning stiffness, effusions, etc? Mickey has mentioned

lately that

she sometimes feels kind of sharp pains in her knee and hips (her other

significant

problem areas), they come and go - but more often again. We see her rheum. in a

few

weeks, I just wondered. It has worked so well for her... I never thought beyond

to what

might happen though of course I've read that that happens.

My other question is this... from what you describe, the needle system you use

is way

different from what we have. Air bubbles are a real worry for me. I am used to

the syringes

we use for the mtx, but the enbrel ones I always have problems with. Mickey is

on a very

small dose... she gets two doses from the one vial. She is very small for

twelve, only about

62 pounds and about 4'7 " . She has grown a lot in the last year... for her,

anyway. She was

on prednisone since she was three but has been off it for almost two years...

something

we never thought we'd see!

Can you tell me more about the syringes you use for ? They sound... less

worrisome

than the ones that come with the kit we get. We live in Canada... do you have to

ask for a

different delivery system? The book I have says not to use the adaptor, (because

we get

two uses from each vial) I had to buy the 25 guage needles to reconstitute the

Enbrel,

then draw the dosage out, then I switch needles to the 27 1/2 - but air bubbles

are a

constant worry. The nurse said as long as its sub-q and I make sure to draw back

so I

know I'm not in a vein, its okay but I am finding it increasingly nerve wracking

and I've

been giving her the mtx injections for 9 years!

thanks

Lynn, mom to Mickey, 12, systemic since 3

Ontario, Canada

>

> Hi all,

> Many of you newbies have no idea who me or are, but I can ramble on and

> on and on.....

> After 18 months of questioning Dr. Lovell at Cinci about increasing

> 's Enbrel to atleast the starting dose of .4mg per kilo he finaly

did.Like

> it was finaly his idea,lol The boy had been on the same starting dose from

> barely 4 to barely 8.

> Having one of the best and most notorious ped rheumies in the world has it's

> pros and cons not to mention the Dr. that did the original trials of Enbrel on

> kids,then add in if it's been studied on children he had something to do with

> it.

> He has always been by the book and his Enbrel excuse was always the FDA said

> to do .4mg per kilo but as far as they knew .2mg per kilo worked just as

> well.The first FDA aproval was to split the dose in half and give 2x a

week.Then

> you could give the whole dose in 1 shot but never give more then 1ml in the

same

> spot.Due to being in the 3 yr sfaety study we had to wait for permission.

> Now they are doing studies and have kids taking 50mg of the 25mg vials all at

> once.

> It took 8 days to get the approval from the insurance company.Way longer then

> when he first started and they called my crying saying he was approved.

> I came right home before picking up the kids to check out these syringes.I

> was so scared that it would be a fixed syringe.I had to do a happy dance when

I

> seen it was a removable BD Precision Glide.

> The 3ml syringe is so much easier then the 1ml.You draw back and it pushes up

> any air on it's own.There was never any air bubbles to get out.I took off the

> 26gauge 5/8 needle and put on his 27gauge 1/2 inch which is the recommended

> norm and what he has had for 5 yrs,adding MTX into it.

> One hour after Emla it was time.The idea was to just not let him see the

> syringe.

> The little stinker said " Aren't I getting a little more then I used to? " Daddy

> and I told him he was right and with our fingers tried to show him how small

> of an amount it was.He DEMANDED to see it and when he did he didn't like it.It

> took a little convincing and he agreed.He did say he would rather get 2 shots

> a week.

> His little bottom lip started quivering and a single tear slid from each

> eye.My heart sunck and I just wanted to grab him in my arms and smother him

with

> hugs and kisses.Unfortunately I had to go back 5 yrs ago when he was 3 and be

> nurse not mommy,well 50/50 compromise.

> He cried a soft cry the entire time.Anxiety and fear at it's best.Once it was

> over and I left to give him his privacy, less then a minuite later he was

> laughing and pretending to saw his daddy in half.

> My biggest fear was that when I pushed the plunger it would just squirt in

> him way too fast.Such a small amount in a big syringe.It turned out that there

> was alot of resistance,especialy at first,but once it started it was no

> differant then a 1ml syringe.

> At times I can't believe we are doing this to see if if will get rid of some

> harmless morning stiffness.s stiffness is at 6 am ,he runs straight from

> his bed to the shower,kinda awkward but not much.We give it 2 months and if no

> change back to just 25mg instead of the 32.5mg.A child or adult can be in

> complete control,even remission and if the morning stiffness is less then 15

> minuites it's normal and nothing to worry about.

> 's local rheumy wouldn't write a script for labs,just said it could be

> done in 3 months when we drive to Cincinnati.Never gone 3 months before but

> Lovell had no problem waiting a couple days and wrote us a script.

> He had things on there that most of your kids get but with it was

> always a simple CBS with diff,SGOP,SGOT (ALT,AST)and SED. and at our local

hospital

> outpatiant lab was less the $60.

> He added CRP,Bun,Creatnine,Liver Profile and urine.$160 but still less then

> the originals done at the childrens hospital by $100.

> It seems like I heard on TV that the CRP was a good,cheap heart test at $100

> as far as inflimation is concerned.Blahhh I pay the first $500.

> Hugs to all.

> Becki and 8 systemic

>

>

>

[Guest guest]

Lynn,

Since the injection is sub cut I wouldn't worry to much about air bubbles.

The best way to get rid of the little buggers is by drawing the syrine with the

Enbrel in it and flick the syringe with your thumb and first finger (just like

you would flick a bug off from you) then slowly push the Enbrel back up toward

the needle being very careful not to push any Enbrel out of the syringe. I am a

visiting nurse and have a patient who I give Enbrel injections to weekly.

Teri

Lynn <llyoung@...> wrote:

Hi Becki

I am a long time member of the list but have not posted in a long time. Kids

getting older,

busier, - and I just kind of needed a break for a while. I tend to get lost in

time reading

the emails. My daughter Mickey is now 12, she's had systemic jra since she was

three.

She started Enbrel about mid June. Prior to that her right knee had been very

swollen with

effusions... (the size of a large grapefruit.. and she is tiny for 12) for about

6 months and

nothing was making a difference. She has had it injected directly so many times,

and it

used to really help but the last time the effussions returned quite quickly and

we really put

off doing it again so soon.

The day after her second injection she came running downstairs to show me her

knee... it

was half the size it had been. By the next day... the effussions were completely

gone.

I do have a question... we are thrilled for obvious reasons with the results of

the Enbrel -

but I have been doing some catch up reading... and I notice some of the kids

stop

responding after a while. Do you know what the typical signs of that are? Is it

what I'd

expect... a return of morning stiffness, effusions, etc? Mickey has mentioned

lately that

she sometimes feels kind of sharp pains in her knee and hips (her other

significant

problem areas), they come and go - but more often again. We see her rheum. in a

few

weeks, I just wondered. It has worked so well for her... I never thought beyond

to what

might happen though of course I've read that that happens.

My other question is this... from what you describe, the needle system you use

is way

different from what we have. Air bubbles are a real worry for me. I am used to

the syringes

we use for the mtx, but the enbrel ones I always have problems with. Mickey is

on a very

small dose... she gets two doses from the one vial. She is very small for

twelve, only about

62 pounds and about 4'7 " . She has grown a lot in the last year... for her,

anyway. She was

on prednisone since she was three but has been off it for almost two years...

something

we never thought we'd see!

Can you tell me more about the syringes you use for ? They sound... less

worrisome

than the ones that come with the kit we get. We live in Canada... do you have to

ask for a

different delivery system? The book I have says not to use the adaptor, (because

we get

two uses from each vial) I had to buy the 25 guage needles to reconstitute the

Enbrel,

then draw the dosage out, then I switch needles to the 27 1/2 - but air bubbles

are a

constant worry. The nurse said as long as its sub-q and I make sure to draw back

so I

know I'm not in a vein, its okay but I am finding it increasingly nerve wracking

and I've

been giving her the mtx injections for 9 years!

thanks

Lynn, mom to Mickey, 12, systemic since 3

Ontario, Canada

>

> Hi all,

> Many of you newbies have no idea who me or are, but I can ramble on and

> on and on.....

> After 18 months of questioning Dr. Lovell at Cinci about increasing

> 's Enbrel to atleast the starting dose of .4mg per kilo he finaly

did.Like

> it was finaly his idea,lol The boy had been on the same starting dose from

> barely 4 to barely 8.

> Having one of the best and most notorious ped rheumies in the world has it's

> pros and cons not to mention the Dr. that did the original trials of Enbrel on

> kids,then add in if it's been studied on children he had something to do with

> it.

> He has always been by the book and his Enbrel excuse was always the FDA said

> to do .4mg per kilo but as far as they knew .2mg per kilo worked just as

> well.The first FDA aproval was to split the dose in half and give 2x a

week.Then

> you could give the whole dose in 1 shot but never give more then 1ml in the

same

> spot.Due to being in the 3 yr sfaety study we had to wait for permission.

> Now they are doing studies and have kids taking 50mg of the 25mg vials all at

> once.

> It took 8 days to get the approval from the insurance company.Way longer then

> when he first started and they called my crying saying he was approved.

> I came right home before picking up the kids to check out these syringes.I

> was so scared that it would be a fixed syringe.I had to do a happy dance when

I

> seen it was a removable BD Precision Glide.

> The 3ml syringe is so much easier then the 1ml.You draw back and it pushes up

> any air on it's own.There was never any air bubbles to get out.I took off the

> 26gauge 5/8 needle and put on his 27gauge 1/2 inch which is the recommended

> norm and what he has had for 5 yrs,adding MTX into it.

> One hour after Emla it was time.The idea was to just not let him see the

> syringe.

> The little stinker said " Aren't I getting a little more then I used to? " Daddy

> and I told him he was right and with our fingers tried to show him how small

> of an amount it was.He DEMANDED to see it and when he did he didn't like it.It

> took a little convincing and he agreed.He did say he would rather get 2 shots

> a week.

> His little bottom lip started quivering and a single tear slid from each

> eye.My heart sunck and I just wanted to grab him in my arms and smother him

with

> hugs and kisses.Unfortunately I had to go back 5 yrs ago when he was 3 and be

> nurse not mommy,well 50/50 compromise.

> He cried a soft cry the entire time.Anxiety and fear at it's best.Once it was

> over and I left to give him his privacy, less then a minuite later he was

> laughing and pretending to saw his daddy in half.

> My biggest fear was that when I pushed the plunger it would just squirt in

> him way too fast.Such a small amount in a big syringe.It turned out that there

> was alot of resistance,especialy at first,but once it started it was no

> differant then a 1ml syringe.

> At times I can't believe we are doing this to see if if will get rid of some

> harmless morning stiffness.s stiffness is at 6 am ,he runs straight from

> his bed to the shower,kinda awkward but not much.We give it 2 months and if no

> change back to just 25mg instead of the 32.5mg.A child or adult can be in

> complete control,even remission and if the morning stiffness is less then 15

> minuites it's normal and nothing to worry about.

> 's local rheumy wouldn't write a script for labs,just said it could be

> done in 3 months when we drive to Cincinnati.Never gone 3 months before but

> Lovell had no problem waiting a couple days and wrote us a script.

> He had things on there that most of your kids get but with it was

> always a simple CBS with diff,SGOP,SGOT (ALT,AST)and SED. and at our local

hospital

> outpatiant lab was less the $60.

> He added CRP,Bun,Creatnine,Liver Profile and urine.$160 but still less then

> the originals done at the childrens hospital by $100.

> It seems like I heard on TV that the CRP was a good,cheap heart test at $100

> as far as inflimation is concerned.Blahhh I pay the first $500.

> Hugs to all.

> Becki and 8 systemic

>

>

>