Re: Info on Enbrel that may help

February 12, 2006

Hi Bill,

My daughter, e, started on Enbrel when she was 3yrs old. My husband and

I were also very hesitant to put her on it due to the side effects. She has

poly JRA and had 6-8 joints involved. She had wonderful results and was

actually symptom free for a year. Our rheumy took her off it in hopes she

had outgrown the JRA. She did great for about 9 months then it came back.

Knowing what we knew about the Enbrel, our doctor put her right back on it

and she is once again symptom free. She is not doing the MTX combo because

her stomach couldn't handle the MTX. She is doing great with just the

Enbrel. We have to consider what our children might be like without the

medication. It's very hard sometimes to put them on such strong medicine,

but when you can see great results, like e jumping on her bed (she's the

only one in the family allowed to do that because then I know she's feeling

good .. . lol) it all seems worth it. I hope Darren has just as good

results . . Keep us posted.

Blessings to you and your family!

Barb and e (5 JRA)

Info on Enbrel that may help

> Hi all,

> My name is Bill From Australia.

> I only recently became a member and I am so amazed by the number of peolpe

> who have the same challenge as we do.

> My son Darren was hit with still's disease in May 2002. We spent 6 weeks

> in hospital until the doctors finally came up with the answer to what was

> wrong with him. It has been a rollacoster ride and like any parent we dont

> want to see our children in pain and suffering. To have a child who could

> stike me out playing in backyard baseball ( for I am a baseball player)

> and throw as hard as a 10 year old at at age 5, then in 1 week be in

> hosptial and hasnt throw a ball since that horrible day is just heart

> breaking. Darren is now started Enbrel and has been on the drug for now 3

> weeks. I really didnt want to put Darren on Enbrel due to medical

> information I read and the serious side effects, however with the pressure

> from the doctors, the school and children support groups I had to start

> him on it for Darren missed half a year of school in 2005. Unfortunantly

> I have not meet anyone or know of anyone here in Australia who has a child

> suffering from still's disease to speak to ab!

> out issues. God bless doctors, however some of the specialist just dont

> seem to understand what we go through. I mean we are in the year 2006

> where technolgy in changing this earth faster as never seen before, body

> transplants that they said were impossible to do only a decade ago, yet

> the only medication they could give us was Prednisolone which seems the be

> used for everything, and Methotrexate which was originally developed for

> cancer back in the sixties and now Enbrel which is so potent and is only

> the last resource. I am sorry that my email is so long however this is the

> first time in 4 years that I have had the chance to talk to someone who

> understands what it is like to have a child with this disease.

> I would appreciate if anyone could email me back if they are on Enbrel and

> what sort of results they are acheiving or not acheiving.

> I have been doing some major research in the area of cellular

> communication for it seems that with every medical website, journals, text

> books that I have studied on still's disease and auto immunes that the

> key problem is a communication breakdown in the immune system where it

> attacks its own self and good cells due to a miss understanding. That if

> you can get the cells talking again and reconising each other, you can

> then stop the over active immune system which would bring it back to its

> normal level and remove the problem. Yets just pray that God will create

> something that will do this and help people through out the world.

> I ve got to go now for Darren needs my help to get up.

> I look forward to hearing from someone soon.

> God Bless

> Bill

>

February 13, 2006

Hello Bill!

My son isn't on Enbrel but he's heading for stronger more potent drugs as

the days go by. He's on the Prednisone and MTX now and they don't seem to be

doing much of anything and more and more joints keep getting added to the pain

side. Good luck with this new treatment. Please keep us updated on you and

your son.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: " Bill Illicic " <bmi1@...>

Hi all,

My name is Bill From Australia.

I only recently became a member and I am so amazed by the number of peolpe who

have the same challenge as we do.

My son Darren was hit with still's disease in May 2002. We spent 6 weeks in

hospital until the doctors finally came up with the answer to what was wrong

with him. It has been a rollacoster ride and like any parent we dont want to see

our children in pain and suffering. To have a child who could stike me out

playing in backyard baseball ( for I am a baseball player) and throw as hard as

a 10 year old at at age 5, then in 1 week be in hosptial and hasnt throw a ball

since that horrible day is just heart breaking. Darren is now started Enbrel and

has been on the drug for now 3 weeks. I really didnt want to put Darren on

Enbrel due to medical information I read and the serious side effects, however

with the pressure from the doctors, the school and children support groups I had

to start him on it for Darren missed half a year of school in 2005.

Unfortunantly I have not meet anyone or know of anyone here in Australia who has

a child suffering from still's disease to speak to about issues. God bless

doctors, however some of the specialist just dont seem to understand what we go

through. I mean we are in the year 2006 where technolgy in changing this earth

faster as never seen before, body transplants that they said were impossible to

do only a decade ago, yet the only medication they could give us was

Prednisolone which seems the be used for everything, and Methotrexate which was

originally developed for cancer back in the sixties and now Enbrel which is so

potent and is only the last resource. I am sorry that my email is so long

however this is the first time in 4 years that I have had the chance to talk to

someone who understands what it is like to have a child with this disease.

I would appreciate if anyone could email me back if they are on Enbrel and what

sort of results they are acheiving or not acheiving.

I have been doing some major research in the area of cellular communication for

it seems that with every medical website, journals, text books that I have

studied on still's disease and auto immunes that the key problem is a

communication breakdown in the immune system where it attacks its own self and

good cells due to a miss understanding. That if you can get the cells talking

again and reconising each other, you can then stop the over active immune system

which would bring it back to its normal level and remove the problem. Yets just

pray that God will create something that will do this and help people through

out the world.

I ve got to go now for Darren needs my help to get up.

I look forward to hearing from someone soon.

God Bless

Bill

February 13, 2006

Bill,

My son was diagnosed with Stills in June 2001.

He was maxed out on MTX,Ibuprofen,Plaquenil and still couldn't get below 7mg

pred without all heck breaking loose.

He started Enbrel Sept 2003 and within 9 days everything went away.He has

been in a medicated remission the entire time with the exception of when they

tried to take him off his MTX.Within weeks of restarting it all the arthritis

went away again.

The drugs are scarey but has never had a problem with side effects.He

is having a hard winter this yr with infections but so far nothing serious.He

even tested positive for the flu last Friday but was only realy sick for 1 day.

Hugs

Becki and 7 systemic

February 13, 2006

Hi, Bill. Sorry to hear about your son. Unfortunately I can't help with

any info on Stills or Enbrel; my son has spondylitis and is on

methotrexate, but I did want to let you know about Jo, who lives " Down

Under " . She posts often and may be able to offer some info on things

jra-wise in Australia. I know that others on this list have kids on

Enbrel and I hope they can help you. Take a look at old posts and you

can see some of things Jo has posted about. Her son's name is Bayley.

Post often and let us know how your son is doing, Michele ( 18,

spondy)

February 13, 2006

Welcome fellow Australian!

Did you get my email about the local support?

If you're in NSW there is a Family Picnic we're having in Arthritis

Awareness Week (April 2-9) at Lane Cove National Park in northern

Sydney.

Did Darren's doctor call it Still's Disease? As I thought all the

Aussie docs called it Systemic? I know a few little children with it

here, and could put you in touch with the families.

Anyway, cheers,

Jo

Bayly, 3, extended oligo

>

> Hi all,

> My name is Bill From Australia.

> I only recently became a member and I am so amazed by the number

of peolpe who have the same challenge as we do.

> My son Darren was hit with still's disease in May 2002. We spent 6

weeks in hospital until the doctors finally came up with the answer

to what was wrong with him. It has been a rollacoster ride and like

any parent we dont want to see our children in pain and suffering.

To have a child who could stike me out playing in backyard baseball

( for I am a baseball player) and throw as hard as a 10 year old at

at age 5, then in 1 week be in hosptial and hasnt throw a ball since

that horrible day is just heart breaking. Darren is now started

Enbrel and has been on the drug for now 3 weeks. I really didnt want

to put Darren on Enbrel due to medical information I read and the

serious side effects, however with the pressure from the doctors,

the school and children support groups I had to start him on it for

Darren missed half a year of school in 2005. Unfortunantly I have

not meet anyone or know of anyone here in Australia who has a child

suffering from still's disease to speak to about issues. God bless

doctors, however some of the specialist just dont seem to understand

what we go through. I mean we are in the year 2006 where technolgy

in changing this earth faster as never seen before, body transplants

that they said were impossible to do only a decade ago, yet the only

medication they could give us was Prednisolone which seems the be

used for everything, and Methotrexate which was originally

developed for cancer back in the sixties and now Enbrel which is so

potent and is only the last resource. I am sorry that my email is so

long however this is the first time in 4 years that I have had the

chance to talk to someone who understands what it is like to have a

child with this disease.

> I would appreciate if anyone could email me back if they are on

Enbrel and what sort of results they are acheiving or not acheiving.

> I have been doing some major research in the area of cellular

communication for it seems that with every medical website,

journals, text books that I have studied on still's disease and auto

immunes that the key problem is a communication breakdown in the

immune system where it attacks its own self and good cells due to a

miss understanding. That if you can get the cells talking again and

reconising each other, you can then stop the over active immune

system which would bring it back to its normal level and remove the

problem. Yets just pray that God will create something that will do

this and help people through out the world.

> I ve got to go now for Darren needs my help to get up.

> I look forward to hearing from someone soon.

> God Bless

> Bill

>

February 14, 2006

Hey there Bill,

have you been in touch with AF Qld? 1800 011 041. They can give you

resources, and also put Darren's name down for Camp Footloose each

year, help around September.

If you like, I'll get Nadine at AF NSW to give you an " e " as she's

the one who runs it. She als has RA from a young age so she knows

what's going on!

And there are people in Qld that we know who are exploring other

alteratives, such as food, for their JIA children.

Let's work on this together 'cause no, you are not alone!

Jo

Bayly, 3, extended oligo

> >

> > Hi all,

> > My name is Bill From Australia.

> > I only recently became a member and I am so amazed by the number

> of peolpe who have the same challenge as we do.

> > My son Darren was hit with still's disease in May 2002. We spent

6

> weeks in hospital until the doctors finally came up with the

answer

> to what was wrong with him. It has been a rollacoster ride and

like

> any parent we dont want to see our children in pain and suffering.

> To have a child who could stike me out playing in backyard

baseball

> ( for I am a baseball player) and throw as hard as a 10 year old

at

> at age 5, then in 1 week be in hosptial and hasnt throw a ball

since

> that horrible day is just heart breaking. Darren is now started

> Enbrel and has been on the drug for now 3 weeks. I really didnt

want

> to put Darren on Enbrel due to medical information I read and the

> serious side effects, however with the pressure from the doctors,

> the school and children support groups I had to start him on it

for

> Darren missed half a year of school in 2005. Unfortunantly I have

> not meet anyone or know of anyone here in Australia who has a

child

> suffering from still's disease to speak to about issues. God bless

> doctors, however some of the specialist just dont seem to

understand

> what we go through. I mean we are in the year 2006 where technolgy

> in changing this earth faster as never seen before, body

transplants

> that they said were impossible to do only a decade ago, yet the

only

> medication they could give us was Prednisolone which seems the be

> used for everything, and Methotrexate which was originally

> developed for cancer back in the sixties and now Enbrel which is

so

> potent and is only the last resource. I am sorry that my email is

so

> long however this is the first time in 4 years that I have had

the

> chance to talk to someone who understands what it is like to have

a

> child with this disease.

> > I would appreciate if anyone could email me back if they are on

> Enbrel and what sort of results they are acheiving or not

acheiving.

> > I have been doing some major research in the area of cellular

> communication for it seems that with every medical website,

> journals, text books that I have studied on still's disease and

auto

> immunes that the key problem is a communication breakdown in the

> immune system where it attacks its own self and good cells due to

a

> miss understanding. That if you can get the cells talking again

and

> reconising each other, you can then stop the over active immune

> system which would bring it back to its normal level and remove

the

> problem. Yets just pray that God will create something that will

do

> this and help people through out the world.

> > I ve got to go now for Darren needs my help to get up.

> > I look forward to hearing from someone soon.

> > God Bless

> > Bill

> >

February 14, 2006

Hi Jo & Grant.

Thank you so much for your email the other day.

It is a real blessing to get emails from people who care and understand what it

is like to go through this everyday.

I live on the Gold Coast in Queensland in the Gaven area.

Yes the doctors said it was still's disease and use the word systemic in between

their conversation when talking to me.

I would be blessed if you can refer anyone who is also suffering with this

challenge and what they have done to make things better.

I believe there has to be an answer than just simply taking highly toxic drugs

for the rest of your life.

I really hate it when doctors say now this will suppress the problem however it

wont fix it, and your child may have to be on this for a long period.

I say yets fix it and fix it now!

God Bless.

Bill & Darren( 10 Still's Disease)