Enbrel

[Guest guest]

Hi,

I'm in the UK though ... maybe people who are in the US don't need to wait.

Steve

Subject: Re: Enbrel

Hi Steve,

I don't know why your doctor told you there is a waiting list for Enbrel.

There used to be but they opened an extra laboratory and it is available

now.

I'd check with another Rhuematologist around you and see if your doctor

might

be wrong.

And................when there was a waiting list when I first started taking

it, I just called the Enbrel company and told them I REALLY needed to try it

and I got a very understanding person who gave me some I.D. number and I had

it

at my pharmacy within a few days. Give it a try. I'm not familiar with any

of the other drugs except for Remicade and I told you I did not do well on

it.

Caroline takes Humira and seems to be pleased and I think Marcia still

takes

Kineret and is doing well on it also. These drugs all seem to be " hit and

misses " . I just wish I could get off the MTX but it doesn't seem likely

that it

will happen.

Ca. Carmen

[Guest guest]

Carmen I know in Canada if you have Stills any of the biologics are hard to get approval for.First you havta prove you need it here you have to fail to improve with other drugs first then,if you dont get better your rhumy has to apply on your behalf(well at least in Alberta not really sure about all the other provinces).Take care maybe its same sorta thing in England. d.Canada PS anyone who has R.A though automayically qualifys though kinda stupid really

Re: Re: Enbrel

I'll check out the Enbrel wait for you in the U.K.

Ca. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Debra,

I am also on Enbrel, I began it about the middle to end of Jan. I

noticed a major difference after the very first injection. My pain

levels ae at about a 2-3 as of now. With the vioxx that is, 25 mg a

day, and the sulfasalizine 2000mg a day. I go back to the doctor on

Monday and I think she wants to stop the sulfasalizine here soon, it

may actually be on Monday. Guess I'll just have to wait do find out.

Do you have any insurance? I have Humana and they cover mine. I

think the cash price is 1,502 for 8 injections a month. (which is 2

times a week) I only pay a $45 copay. I don't mind paying that copay

but like the vioxx is like 90 dollars or so cash price just can't

see why I have to pay a $45 copay for something that is only 90

dollars. Anyway, I'm going to get off this soap box. Maybe you

should try, www.helpingpatients.org. I don't know that enliven

services is part of their organazition as of yet due to Enbrel being

so new to the market. Good luck, I know how it is to need the meds

and not have the money, i'm only 25 and don't feel I should have

this type of stress but it is obivous that my genetics didn't agree.

Anyhow,hope you get some help.

Keli

> Hi..

> I recently completed a six month study using enbrel to treat

my

> PA. I have been so amazed all of my symptoms disappeared. My

skin

> completely cleared. The aching and fatigue were completely gone.

> Now the study is over and I am in the second month of no

medication.

> The stiffness in my back and joints just started. The medication

is

> not covered by insurance and is $1,300. per month. Does anyone

> know of a cheaper resource? Has anyone else had any experience

with

> this medication? It was truly a miracle for me.

>

> Debra

[Guest guest]

hi debra,

i started taking enbrel in jan. insurance co. mistakenly paid for it.

am off now until new insurance starts in june, i could tell within a

month of not taking it the difference.

enliven has an assistance program,i didn't qualify because i have

anthem senior advantage thru medicare,(and anthem doesn't cover it

because they only cover generic). i was turned down on appeal to

anthem, now under appeal to medicare, an outside co. reviews the

appeals for them. but, as i said, my husband's new insurance kicks

in june 1.

needymeds.com refers you back to enliven, i don't know about the

websites just mentioned this week.

medicaid does help if you are willing to go thru their screening

process. if you belong to a church, sometimes if they are able to

help, they will contribute. walmart is the cheapest i have found

the enbrel.

that's about all i can think of to help, i have been trying to get

help since feb. with no luck. counting the days down til june!

susan in ohio

ps. it's not made in canada, even tried that route, actually was

given phone no. by rep at anthem.

[Guest guest]

I don't know about anyone else but my husband and I look at the

Enbrel company as drug pushers. Let me explain. A drug pusher

will give you your first few doses for free and once they have

you 'hooked' they start charging you. It gets to the point that

you will pay anything to get it because it makes you feel so

good. It takes the pain away. Now look at those so called studies

that Enbrel does. Make you feel good for 6 months then take it

away. Now, want more? Feels pretty good to be pain free doesn't

it? Nice smooth skin. It will only cost you $1,300 to feel that

way again. I really don't think they are studies at all. They

have been doing that for a long time. I think they do it to get

more people to buy their product no matter what the outrageous

cost is.

Just my opinion.

Mickey in WI

[Guest guest]

My expedrience with Enbrel is only of two months duration, but I'm definitely

not pain free and I have a great deal of swelling [more than before] but I do

have more days of more energy [not bunches, but lotsd better], but I have

several days down if I do things several days in a row. How long did your

Enbrel take to give such wonderful results? Ohh, yes, another positive is that

my skin has cleared. My rheumy had suggested I try reducing my mtx from four to

gradually one. I was down to one, but I took two this week to see if that

affects the swelling. I don't know how long the insurance will provide a month

of the medication for $50. I keep being afraid they'll say, " Enough! "

lajollaocaso <lajollaocaso@...> wrote:Hi..

I recently completed a six month study using enbrel to treat my

PA. I have been so amazed all of my symptoms disappeared. My skin

completely cleared. The aching and fatigue were completely gone.

Now the study is over and I am in the second month of no medication.

The stiffness in my back and joints just started. The medication is

not covered by insurance and is $1,300. per month. Does anyone

know of a cheaper resource? Has anyone else had any experience with

this medication? It was truly a miracle for me.

Debra

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

Also,in August 2001,list member Jack aka Cornishpro@... began to

conduct extensive research which he publishes as the " Psoriatic Arthritis

Research Newsletter " , monthly in our email and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage as well as the

archives of the list.

Don't forget that the list archives comprise a tremendous amount of information

(Over three years of messages and answers).Feel free to browse them at your

convenience.

LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or

question, chances are there is a person who has been around a while who can help

you out with AT LEAST an educated guess for an answer! If not,we can steer you

in the right direction with a good website to go to,

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

Orin, List Editor

, List Editor

and any others who help in any way (thank you!)

[Guest guest]

I have been involved in 2 study programs using Enbrel to treat

Psoriasis. I also have PA. I had my PA under control using MTX and

NSAID's. I would still get occasional flair ups in my joints. My P

was not controlled by the treatment and I had 12% of my body covered

in moderate to heavy scale. 2 1/2 years ago I switched medical plans

at work and signed up for a PPO. I then started going to Stanford

Univ. Med Center. My Dermatologist submitted me to their Clinical

Trials group. I qualified for the a blind study using Enbrel to treat

P. I had to go off my old treatments for 45 days before the study

started. My PA started to act up just before the study. Once I was

on the Enbrel it calmed down and I only had occasional flair-ups. My

P started clearing up steadily and I now only have a couple of small

patches. I am down to less than 2% coverage on my skin. When the

study ended I was off Enbrel for 2 months while waiting for a second

study to start-up. Some of my patches returned and I had joint pain

in my hands during the second month. I was able to control that with

NSAID's. I am currently on a long term study using 50mg/week. I take

2 injections twice a week. My PA is fully controlled and I am seeing

a slow but steady improvement in my skin.

Enbrel is the only medication that I use now. I have been taking

it for almost 2 1/2 years now. While it has not completely cleared up

my skin I am seeing a slow improvement each month. I had rapid

improvement in the first 4-5 months I was on the drug. After 6 months

my skin had cleared up about 45%. My improvement tapered off then. I

think that the change was also due to dosage. I do not know what

dosage I was on during the blind portion of the study. I suspect it

was 50mg/week. After 6 months I was moved to the open phase of the

study and my dosage was 25mg/week. This is when my improvment seemed

to slow down.

Enbrel is an approved medication for P and PA. I would appeal to your

insurance company and have your doctor write a letter indicating the

sucsess you have had with the medication. A treatment that has shown

to be sucsessful and is not as hazardous to your liver should not be

refused. $1,300/mo is not cheap but there are plenty of approved

drugs that cost more than that. They should approve it. Keep writing

them and don't take no for an answer. The cost of Enbrel should come

down as it is finding more uses and the demand is going up. They have

increased production and it is more readily available now. When my my

first trial ended you had to go on a waiting list to get the drug. I

think that it cost even more then since it was in such short supply.

Good Luck

Cunningham

Hi..

> I recently completed a six month study using enbrel to treat my

> PA. I have been so amazed all of my symptoms disappeared. My skin

> completely cleared. The aching and fatigue were completely gone.

> Now the study is over and I am in the second month of no medication.

> The stiffness in my back and joints just started. The medication is

> not covered by insurance and is $1,300. per month. Does anyone

> know of a cheaper resource? Has anyone else had any experience with

> this medication? It was truly a miracle for me.

>

> Debra

>

>

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@y...).

>

> Also,in August 2001,list member Jack aka Cornishpro@a...

began to conduct extensive research which he publishes as the

" Psoriatic Arthritis Research Newsletter " , monthly in our email and

digest format. Many thanks to Jack. Back issues of the newsletter are

stored on our PA webpage as well as the archives of the list.

>

> Don't forget that the list archives comprise a tremendous amount of

information (Over three years of messages and answers).Feel free to

browse them at your convenience.

>

> LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment

or question, chances are there is a person who has been around a while

who can help you out with AT LEAST an educated guess for an answer! If

not,we can steer you in the right direction with a good website to go to,

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> Orin, List Editor

> , List Editor

> and any others who help in any way (thank you!)

>

>

[Guest guest]

I'm relatively new to all of this but......I don't get it. If

Enbrel suppresses the immune system why would there be less flu,

colds, etc. ?

I just haven't been sick since I

> started taking it.

>

>

> I have to agree with Liz. Since I have taken Enbrel, I never get

the flu, have a cold, etc. For some reason, my overall health

improved.

>

> in Poulsbo, Wa.

>

>

[Guest guest]

I agree that since I started taking it about 1-1/2 years ago I have

to watch out not to get any infections since the immune system is

very low. I have had 2 that I got from my grand kids that really

knocked me for a loop. The only way to get rid of them was to get

off all meds for a couple of weeks and take an antibiotic. That is

no fun. I have learned that if the kids are sick, I don't go near

them. I also learned that the MTX and Enbrel do work because I

couldn't wait to get back on them I hurt so bad.

Dick

[Guest guest]

DITTO!!!

[ ] Enbrel

Liz wrote: I just haven't been sick since I

started taking it.

I have to agree with Liz. Since I have taken Enbrel, I never get the

flu, have a cold, etc. For some reason, my overall health improved.

[Guest guest]

Dear Faye,

I guess that means you cannot have surgery while on Enbrel...and that was my

plan...to have a hysterectomy and uvulotomy while on it....while I didn't have

any inflammation going on so I wouldn't have flares after the surgery...

So there goes my only hope...

But thanks for letting me know...

I guess you can get serious infections while on it from surgery???

I;ll pray for you...I know it's tuff...codeine would kill me...I'd be out of

it all day....and unable to work...I'm close to that point now anyways even

while on the pred, which I hate due to the constant shakiness and weakness, all

the while, I'm trying to gain weight again and it's tuff when your metabolism

is going crazy on pred! It's a wonder I eat on this severe sore throat and

mouth...I think the only thing really helping is the vitamin regimen I went on,

but I can't seem to get off the pred.

Thanks so much for writing..

Debra!

[Guest guest]

Hi ,

I truly hope the enbrel works for your little Breana. Please remind me

-was it TRAPS that she has?

We will most probably decide to use it sometime in the near future. I

guess we are hugely lucky since the prednisone doesn't result in any

mood swings for Hana and not only brings down the fever but stops the

pain and gastro symptoms as well. I know this is very unusual for a

HIDs patient to have any luck at all with the prednisone, so we are

counting our blessings.

Do you think that the T & A helped with the fevers? Every 19 days is

still really too close. I don't know how you're surviving.

I'll be curious with how Breana deals with the 2x week injection. I

think that'll be the toughest part about it.

I hope she enters into an easy cycle very soon. Good luck,

linda

Mom to HIDs kids Hana 3 and Georgia 1

Vancouver BC

> Hi,

> I have not posted in a little while...but I have been reading

the posts.

> The ones about Enbrel caught my attention. BReana will be going

on Enbrel in November. We went thru hell last winter trying to get

her on it...even Dr. Kastner tried to get her it. But because she

wasn't four we had no luck. I had been thru the training on how to

administer the med and I still have the huge patient info kit!

> Prednisone is horrible for her...she has to take it since she

goes to over 107 , but she gets SEVERE mood swings and other side

effects...Before the T & A she was fevering every 12 days.....we now

have fever every 19 so she is on the Prednisone a lot! To much!

> I am hopeful that the Enbrel will help her, I just want her off

the Prednisone so badly.

>

> mom to BReana 4 in November and 14!

>

>

[Guest guest]

Hi ,

I truly hope the enbrel works for your little Breana. Please remind me

-was it TRAPS that she has?

We will most probably decide to use it sometime in the near future. I

guess we are hugely lucky since the prednisone doesn't result in any

mood swings for Hana and not only brings down the fever but stops the

pain and gastro symptoms as well. I know this is very unusual for a

HIDs patient to have any luck at all with the prednisone, so we are

counting our blessings.

Do you think that the T & A helped with the fevers? Every 19 days is

still really too close. I don't know how you're surviving.

I'll be curious with how Breana deals with the 2x week injection. I

think that'll be the toughest part about it.

I hope she enters into an easy cycle very soon. Good luck,

linda

Mom to HIDs kids Hana 3 and Georgia 1

Vancouver BC

> Hi,

> I have not posted in a little while...but I have been reading

the posts.

> The ones about Enbrel caught my attention. BReana will be going

on Enbrel in November. We went thru hell last winter trying to get

her on it...even Dr. Kastner tried to get her it. But because she

wasn't four we had no luck. I had been thru the training on how to

administer the med and I still have the huge patient info kit!

> Prednisone is horrible for her...she has to take it since she

goes to over 107 , but she gets SEVERE mood swings and other side

effects...Before the T & A she was fevering every 12 days.....we now

have fever every 19 so she is on the Prednisone a lot! To much!

> I am hopeful that the Enbrel will help her, I just want her off

the Prednisone so badly.

>

> mom to BReana 4 in November and 14!

>

>

[Guest guest]

HI ,

Dr. Kastner had felt strongly that Breana's testing would come back + for TRAPS

but it did not. Just goes to show you must have the testing done! We recently

had the only testing done that he did not do and that was for Muckle Wells

Syndrome since Breana is losing her hearing....still waiting for results(since

May).

Both Dr. Kastner and Her doc here at Boston Children's feel that the Enbrel may

have an effect on her since she has so many 'TRAPS' like symptoms. And as I

said if it will help the horrible side effects from the Prednisone lets try it.

I think the T & A helped add 7 days between her fevers since she was on a

solid 12 day cycle for 6 months before the T & A. Around here we are happy to

have those 7 days! Just in spreading out by 7 days we have seen a HUGE change

in Breana. Even went to the beach for the first time ever with her! (3 times)

As far as the injections..... I am scared to death! But her godmommy is a

hospice nurse and has said she will come help me...wont do it herself because I

need to learn but will hold my hand! And Breana's!!

Just curious but because you are not in the states would Enbrel be available

before the girls turn 4? Here in he states it is only FDA approved for 4+,

hence us needing to wait this past year!

Re: Enbrel

Hi ,

I truly hope the enbrel works for your little Breana. Please remind me

-was it TRAPS that she has?

We will most probably decide to use it sometime in the near future. I

guess we are hugely lucky since the prednisone doesn't result in any

mood swings for Hana and not only brings down the fever but stops the

pain and gastro symptoms as well. I know this is very unusual for a

HIDs patient to have any luck at all with the prednisone, so we are

counting our blessings.

Do you think that the T & A helped with the fevers? Every 19 days is

still really too close. I don't know how you're surviving.

I'll be curious with how Breana deals with the 2x week injection. I

think that'll be the toughest part about it.

I hope she enters into an easy cycle very soon. Good luck,

linda

Mom to HIDs kids Hana 3 and Georgia 1

Vancouver BC

> Hi,

> I have not posted in a little while...but I have been reading

the posts.

> The ones about Enbrel caught my attention. BReana will be going

on Enbrel in November. We went thru hell last winter trying to get

her on it...even Dr. Kastner tried to get her it. But because she

wasn't four we had no luck. I had been thru the training on how to

administer the med and I still have the huge patient info kit!

> Prednisone is horrible for her...she has to take it since she

goes to over 107 , but she gets SEVERE mood swings and other side

effects...Before the T & A she was fevering every 12 days.....we now

have fever every 19 so she is on the Prednisone a lot! To much!

> I am hopeful that the Enbrel will help her, I just want her off

the Prednisone so badly.

>

> mom to BReana 4 in November and 14!

>

>

[Guest guest]

HI ,

Dr. Kastner had felt strongly that Breana's testing would come back + for TRAPS

but it did not. Just goes to show you must have the testing done! We recently

had the only testing done that he did not do and that was for Muckle Wells

Syndrome since Breana is losing her hearing....still waiting for results(since

May).

Both Dr. Kastner and Her doc here at Boston Children's feel that the Enbrel may

have an effect on her since she has so many 'TRAPS' like symptoms. And as I

said if it will help the horrible side effects from the Prednisone lets try it.

I think the T & A helped add 7 days between her fevers since she was on a

solid 12 day cycle for 6 months before the T & A. Around here we are happy to

have those 7 days! Just in spreading out by 7 days we have seen a HUGE change

in Breana. Even went to the beach for the first time ever with her! (3 times)

As far as the injections..... I am scared to death! But her godmommy is a

hospice nurse and has said she will come help me...wont do it herself because I

need to learn but will hold my hand! And Breana's!!

Just curious but because you are not in the states would Enbrel be available

before the girls turn 4? Here in he states it is only FDA approved for 4+,

hence us needing to wait this past year!

Re: Enbrel

Hi ,

I truly hope the enbrel works for your little Breana. Please remind me

-was it TRAPS that she has?

We will most probably decide to use it sometime in the near future. I

guess we are hugely lucky since the prednisone doesn't result in any

mood swings for Hana and not only brings down the fever but stops the

pain and gastro symptoms as well. I know this is very unusual for a

HIDs patient to have any luck at all with the prednisone, so we are

counting our blessings.

Do you think that the T & A helped with the fevers? Every 19 days is

still really too close. I don't know how you're surviving.

I'll be curious with how Breana deals with the 2x week injection. I

think that'll be the toughest part about it.

I hope she enters into an easy cycle very soon. Good luck,

linda

Mom to HIDs kids Hana 3 and Georgia 1

Vancouver BC

> Hi,

> I have not posted in a little while...but I have been reading

the posts.

> The ones about Enbrel caught my attention. BReana will be going

on Enbrel in November. We went thru hell last winter trying to get

her on it...even Dr. Kastner tried to get her it. But because she

wasn't four we had no luck. I had been thru the training on how to

administer the med and I still have the huge patient info kit!

> Prednisone is horrible for her...she has to take it since she

goes to over 107 , but she gets SEVERE mood swings and other side

effects...Before the T & A she was fevering every 12 days.....we now

have fever every 19 so she is on the Prednisone a lot! To much!

> I am hopeful that the Enbrel will help her, I just want her off

the Prednisone so badly.

>

> mom to BReana 4 in November and 14!

>

>

[Guest guest]

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

HI ,

Dr. Kastner tried to get the enbrel but was denied due to her age and no DX

of the genetic disorders he is studying. My insurance carrier denied on the

basis of the FDA approval. Which kicks my butt because I have met parents of

children with JRA who are on Enbrel at 3 years old! We even got our local

politicians involved in the fight but because of that FDA approval no go.

As far as the compassionate use clause we even tried that! But the company

that makes ENbrel is also the same company that had the Phen Phen diet pill

trouble. So they are unwilling to take any " chances with a minor child " (quote

from my doc when he read the letter to me) We even looked into paying ourselves

but there was no way we could afford the $20,000.00 price tag for a years drug!

The final thing we had tossed around was changing her DX to JRA since that

might be a way to get her the Enbrel BUT that would have meant the insurance

company could say that she had to try other drugs first, which we knew we would

not be able to do!

The Muckle Wells testing was done here and her doc has been calling weekly!

UGH

I can not believe Janet is leaving! I had a tear filled talk with her when

I first heard the news! She has been such an asset in so many ways to me and so

many others!!!

We all are strong!!!!!!!!!!!! And in those times when we don't feel it we

have our companions in this group to remind us and lend a supportive hand!

Re: Enbrel

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

HI ,

Dr. Kastner tried to get the enbrel but was denied due to her age and no DX

of the genetic disorders he is studying. My insurance carrier denied on the

basis of the FDA approval. Which kicks my butt because I have met parents of

children with JRA who are on Enbrel at 3 years old! We even got our local

politicians involved in the fight but because of that FDA approval no go.

As far as the compassionate use clause we even tried that! But the company

that makes ENbrel is also the same company that had the Phen Phen diet pill

trouble. So they are unwilling to take any " chances with a minor child " (quote

from my doc when he read the letter to me) We even looked into paying ourselves

but there was no way we could afford the $20,000.00 price tag for a years drug!

The final thing we had tossed around was changing her DX to JRA since that

might be a way to get her the Enbrel BUT that would have meant the insurance

company could say that she had to try other drugs first, which we knew we would

not be able to do!

The Muckle Wells testing was done here and her doc has been calling weekly!

UGH

I can not believe Janet is leaving! I had a tear filled talk with her when

I first heard the news! She has been such an asset in so many ways to me and so

many others!!!

We all are strong!!!!!!!!!!!! And in those times when we don't feel it we

have our companions in this group to remind us and lend a supportive hand!

Re: Enbrel

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

oops forget to mention that if she does have MWS then treatment is with

Kinerat(sp)

Re: Enbrel

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

oops forget to mention that if she does have MWS then treatment is with

Kinerat(sp)

Re: Enbrel

Hi ,

I'm so sorry to hear about Breana having hearing problems too. I

wonder if she got a definitive diagnosis of Muckle wells that she

would be able to get on Enbrel sooner than 4. Can NIH give you the

prescription? I know they can administer the drugs under certain

circumstances.

Are you calling for the results? I called or emailed Janet once a

week after the inital 6 weeks of waiting until I got the results. I

have no idea if I got them any sooner becuse of my persistance, but

Janet was always very sweet about it and always gave me some sort of

response. The bad news is that she is retiring on Sept 10 and there

is no one yet to replace her.

As for the 4 y.o. limit, Dr. Kastner sounded hopeful that if we wanted

the enbrel sooner than 4 that it may be possible (although it had

never been given to any one less than 4 before). Since we didn't

pursue it, we never did get a definitive answer.

I'm curious, who is turning you down-insurance? your doctor? NIH? it

blows me away that some one is such obvious need would be turned down.

There is a " compassionate use " clause with many drugs that sometimes

allows exceptions. I'm wondering what other avenue you can try.

Here in Canada the drug is not even approved yet, but can be given for

certain circumstances.

Hang in there. I remember when Hana had 110 days of fever between her

1st and 2nd birthday. I was so bleary eyed from the continuous lack

of sleep and the emotional toll. Eeks, those aren't good memories.

You're very strong . The good news i that this will come to an

end sometime soon.

> > Hi,

> > I have not posted in a little while...but I have been reading

> the posts.

> > The ones about Enbrel caught my attention. BReana will be going

> on Enbrel in November. We went thru hell last winter trying to get

> her on it...even Dr. Kastner tried to get her it. But because she

> wasn't four we had no luck. I had been thru the training on how to

> administer the med and I still have the huge patient info kit!

> > Prednisone is horrible for her...she has to take it since she

> goes to over 107 , but she gets SEVERE mood swings and other side

> effects...Before the T & A she was fevering every 12 days.....we now

> have fever every 19 so she is on the Prednisone a lot! To much!

> > I am hopeful that the Enbrel will help her, I just want her off

> the Prednisone so badly.

> >

> > mom to BReana 4 in November and 14!

> >

> >

[Guest guest]

Hi Ann, I have been on Enbrel for about a year and a half and it is

a wonderful drug. Not a cure all, but a lot of help. The big risk

with it is infections. If you get an infection you need to contact

your doctor right away. I have had two since starting it and both

times I had to stop taking it and my MTX until the infection was

gone. You learn just how well they work when you have to stop

taking them. The other thing is injection site reaction. I got

them for the first couple of months but do not get them very often

now. They just look a little black and blue for a day or so.

Good Luck with your's.

Dick

The smaller needles make it eaiser to take now then before.

[Guest guest]

Hi,

We tried to get BReana on Enbrel last year with no luck. She will be

starting Enbrel in November when she turns 4. I have looked into the side

effects and feel we need to give it a try. Breana has really bad self abusive

behavior when on Prednisone(every 19 days for 6 days). So we are willing to try

it, Dr. Costner is hopeful hat it will help her as are her doc's in Boston

Children's.

This was not a decision we came at easily due to the nature of

administration of the drug(injection) and the possible side effects. But like I

said above the side effects we are dealing with now make it very hard for Breana

to live and interact with children her age which limiting her social

skills...etc...etc..etc. So we will try and hope that it helps her.

mom to Breana 3.11 months! And Ashle y14 yrs

[Guest guest]

Hi,

We tried to get BReana on Enbrel last year with no luck. She will be

starting Enbrel in November when she turns 4. I have looked into the side

effects and feel we need to give it a try. Breana has really bad self abusive

behavior when on Prednisone(every 19 days for 6 days). So we are willing to try

it, Dr. Costner is hopeful hat it will help her as are her doc's in Boston

Children's.

This was not a decision we came at easily due to the nature of

administration of the drug(injection) and the possible side effects. But like I

said above the side effects we are dealing with now make it very hard for Breana

to live and interact with children her age which limiting her social

skills...etc...etc..etc. So we will try and hope that it helps her.

mom to Breana 3.11 months! And Ashle y14 yrs

[Guest guest]

In a message dated 10/20/2004 10:04:27 PM Eastern Standard Time,

tr1rt@... writes:

I like that this drug is working so well but the itchyness is driving me up

a wall.

I used t get some mild allergic reations with Enbrel and started taking an

antihistomine hours before the injection. I t helped tremondously.

Janet