Re: tisha looking for kineret

[Guest guest]

can you tell me how to get ahold of the AMGEN........he is 10 now. and he has

suffered a great deal ......thank you,,,,, sorry i just have never heard of this

place. tish

margueritewestfall <mwestfal@...> wrote:

Hello again,

So two years into the disease? How old is your child now? I would be

surprised if it's not available...but, you could go onto the AMGEN

website and ask..they are the manufacuters of the drug...would you

ever come to the united states for treatment? I'll be anxious to hear

more about your situation. Marguerite and

> > Hello All,

> > had an appointment at Texas ish Rite in Dallas

> > yesterday. It was the second time in 4 years that we went with

no

> > complaints (once earlier this spring)....what a blessing and hugh

> > relief. was diagnosed at a year of age and had been in a

> > constant flare for 3 1/2 years. The steroid pulses only seemed

to

> > tone down the inflammation, the rash was daily, anemia, ESR 115-

30,

> > swollen & painful joints, PLTs at times greater than 1

> million...many

> > of you reading this have been here. Feeling " good " becomes a

> > realitive term...you never seem to get totaly healthy.

> > has been on high dose IV steroids, MTX, Enbrel and was

> > finally started on KINERET (this January). As many of you know,

the

> > results were dramatic. His labs are normal, no swelling, rash, no

> > pain, no arthritis, no fevers....he looks and feels great. He has

> > gained 7 lbs since April and grown 3 1/2 inches...It has been a

> true

> > miracle.

> > The reason for this post is to give you all hope. After

> talking

> > with his rheumatologist, Marilynn Punaro...she informed me that

> they

> > know that systemic jra patients OVER PRODUCE INTERLEUKIN-1...it

is

> a

> > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the

> PRECURSOR

> > to IL-6 (some of you may have heard about an IL-6 drug coming

> > available). She believes that you inhibit IL-1 formation with

> Kineret

> > and you stop the inflammaion cycle in these kids. She doesn't

> think

> > the IL-6 drug is the way to go (not to mention it isn't even

> > available in the US). They have studied Enbrel in systemic kids

(on

> a

> > large scale) and it did not work (not to say that some of the

kids

> > out there haven't responded...they may have...but for the severe

> > systemic kids Kineret appears to be the key). Her hopes is to

study

> > Kineret on a larger group (she has had a hard time getting AMGEN

to

> > support her study because it is a " small patient population " ) As

> you

> > know it is a very expensive drug that was originally developed

for

> > adults (adults have not responded to it). She has published an

> > abstract recently describing Kineret in 10 patients ( being

> > #6). Nine out of the ten have responded dramatically like

.

> > Only one patient hasn't responded...sadly enough...it may have

been

> a

> > situation of too little too late...in that she is now 13 and has

> had

> > systemic symptoms since 18 months of age (it brought tears to my

> > eyes...god bless her..she is still experiencing fevers, etc.).

She

> > thinks that Kineret should be tried as a first line thearpy EVEN

> > before STEROIDS in controlling inflammation in systemic patients.

> As

> > far as long term effects...we don't know...but, we don't know

about

> a

> > lot of these medications that we are forced to try. She feels

that

> it

> > is safer than some of the longer half life drugs (Enbrel and

> > Remicade). Because Kineret has such a short half life it is given

> as

> > a daily injection.

> > Well, I just wanted to share our experience and knowledge

from

> > yesterday's visit. I hope it may help any of you out there that

> feel

> > lost and without hope in battling this disease. If anyone wants

to

> > contact me about Kineret please email me directly at

mwestfal " at "

> >

>

ktc.com.

> > God Bless and Merry CHristmas, Marguerite and (systemic 5)

> >

> >

> >

> >

> >

[Guest guest]

Hi tisha,

funny you should email back so soon..i got the box of medication and

I'm on the phone right now with amgen...they gave me the phone number

of amgen/ kineret/ canada at 866-204-3546 (customer care)...so it

sounds like it is available...marguerite

> > > Hello All,

> > > had an appointment at Texas ish Rite in Dallas

> > > yesterday. It was the second time in 4 years that we went with

> no

> > > complaints (once earlier this spring)....what a blessing and

hugh

> > > relief. was diagnosed at a year of age and had been in a

> > > constant flare for 3 1/2 years. The steroid pulses only seemed

> to

> > > tone down the inflammation, the rash was daily, anemia, ESR 115-

> 30,

> > > swollen & painful joints, PLTs at times greater than 1

> > million...many

> > > of you reading this have been here. Feeling " good " becomes a

> > > realitive term...you never seem to get totaly healthy.

> > > has been on high dose IV steroids, MTX, Enbrel and

was

> > > finally started on KINERET (this January). As many of you know,

> the

> > > results were dramatic. His labs are normal, no swelling, rash,

no

> > > pain, no arthritis, no fevers....he looks and feels great. He

has

> > > gained 7 lbs since April and grown 3 1/2 inches...It has been a

> > true

> > > miracle.

> > > The reason for this post is to give you all hope. After

> > talking

> > > with his rheumatologist, Marilynn Punaro...she informed me that

> > they

> > > know that systemic jra patients OVER PRODUCE INTERLEUKIN-1...it

> is

> > a

> > > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the

> > PRECURSOR

> > > to IL-6 (some of you may have heard about an IL-6 drug coming

> > > available). She believes that you inhibit IL-1 formation with

> > Kineret

> > > and you stop the inflammaion cycle in these kids. She doesn't

> > think

> > > the IL-6 drug is the way to go (not to mention it isn't even

> > > available in the US). They have studied Enbrel in systemic kids

> (on

> > a

> > > large scale) and it did not work (not to say that some of the

> kids

> > > out there haven't responded...they may have...but for the

severe

> > > systemic kids Kineret appears to be the key). Her hopes is to

> study

> > > Kineret on a larger group (she has had a hard time getting

AMGEN

> to

> > > support her study because it is a " small patient population " )

As

> > you

> > > know it is a very expensive drug that was originally developed

> for

> > > adults (adults have not responded to it). She has published an

> > > abstract recently describing Kineret in 10 patients (

being

> > > #6). Nine out of the ten have responded dramatically like

> .

> > > Only one patient hasn't responded...sadly enough...it may have

> been

> > a

> > > situation of too little too late...in that she is now 13 and

has

> > had

> > > systemic symptoms since 18 months of age (it brought tears to

my

> > > eyes...god bless her..she is still experiencing fevers, etc.).

> She

> > > thinks that Kineret should be tried as a first line thearpy

EVEN

> > > before STEROIDS in controlling inflammation in systemic

patients.

> > As

> > > far as long term effects...we don't know...but, we don't know

> about

> > a

> > > lot of these medications that we are forced to try. She feels

> that

> > it

> > > is safer than some of the longer half life drugs (Enbrel and

> > > Remicade). Because Kineret has such a short half life it is

given

> > as

> > > a daily injection.

> > > Well, I just wanted to share our experience and knowledge

> from

> > > yesterday's visit. I hope it may help any of you out there

that

> > feel

> > > lost and without hope in battling this disease. If anyone wants

> to

> > > contact me about Kineret please email me directly at

> mwestfal " at "

> > >

> >

>

ktc.com.

> > > God Bless and Merry CHristmas, Marguerite and (systemic 5)

> > >

> > >

> > >

> > >

> > >

[Guest guest]

thank you so much. trish

margueritewestfall <mwestfal@...> wrote:

Hi tisha,

funny you should email back so soon..i got the box of medication and

I'm on the phone right now with amgen...they gave me the phone number

of amgen/ kineret/ canada at 866-204-3546 (customer care)...so it

sounds like it is available...marguerite

> > > Hello All,

> > > had an appointment at Texas ish Rite in Dallas

> > > yesterday. It was the second time in 4 years that we went with

> no

> > > complaints (once earlier this spring)....what a blessing and

hugh

> > > relief. was diagnosed at a year of age and had been in a

> > > constant flare for 3 1/2 years. The steroid pulses only seemed

> to

> > > tone down the inflammation, the rash was daily, anemia, ESR 115-

> 30,

> > > swollen & painful joints, PLTs at times greater than 1

> > million...many

> > > of you reading this have been here. Feeling " good " becomes a

> > > realitive term...you never seem to get totaly healthy.

> > > has been on high dose IV steroids, MTX, Enbrel and

was

> > > finally started on KINERET (this January). As many of you know,

> the

> > > results were dramatic. His labs are normal, no swelling, rash,

no

> > > pain, no arthritis, no fevers....he looks and feels great. He

has

> > > gained 7 lbs since April and grown 3 1/2 inches...It has been a

> > true

> > > miracle.

> > > The reason for this post is to give you all hope. After

> > talking

> > > with his rheumatologist, Marilynn Punaro...she informed me that

> > they

> > > know that systemic jra patients OVER PRODUCE INTERLEUKIN-1...it

> is

> > a

> > > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the

> > PRECURSOR

> > > to IL-6 (some of you may have heard about an IL-6 drug coming

> > > available). She believes that you inhibit IL-1 formation with

> > Kineret

> > > and you stop the inflammaion cycle in these kids. She doesn't

> > think

> > > the IL-6 drug is the way to go (not to mention it isn't even

> > > available in the US). They have studied Enbrel in systemic kids

> (on

> > a

> > > large scale) and it did not work (not to say that some of the

> kids

> > > out there haven't responded...they may have...but for the

severe

> > > systemic kids Kineret appears to be the key). Her hopes is to

> study

> > > Kineret on a larger group (she has had a hard time getting

AMGEN

> to

> > > support her study because it is a " small patient population " )

As

> > you

> > > know it is a very expensive drug that was originally developed

> for

> > > adults (adults have not responded to it). She has published an

> > > abstract recently describing Kineret in 10 patients (

being

> > > #6). Nine out of the ten have responded dramatically like

> .

> > > Only one patient hasn't responded...sadly enough...it may have

> been

> > a

> > > situation of too little too late...in that she is now 13 and

has

> > had

> > > systemic symptoms since 18 months of age (it brought tears to

my

> > > eyes...god bless her..she is still experiencing fevers, etc.).

> She

> > > thinks that Kineret should be tried as a first line thearpy

EVEN

> > > before STEROIDS in controlling inflammation in systemic

patients.

> > As

> > > far as long term effects...we don't know...but, we don't know

> about

> > a

> > > lot of these medications that we are forced to try. She feels

> that

> > it

> > > is safer than some of the longer half life drugs (Enbrel and

> > > Remicade). Because Kineret has such a short half life it is

given

> > as

> > > a daily injection.

> > > Well, I just wanted to share our experience and knowledge

> from

> > > yesterday's visit. I hope it may help any of you out there

that

> > feel

> > > lost and without hope in battling this disease. If anyone wants

> to

> > > contact me about Kineret please email me directly at

> mwestfal " at "

> > >

> >

>

ktc.com.

> > > God Bless and Merry CHristmas, Marguerite and (systemic 5)

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi trish,

save my phone number and you can call anytime if you ever need more

specific help with the drug...(830) 997-4821 or mwestfal " at " ktc.com-

-- In , tisha <tisha_rocks@y...> wrote:

> thank you so much. trish

>

> margueritewestfall <mwestfal@k...> wrote:

> Hi tisha,

> funny you should email back so soon..i got the box of medication

and

> I'm on the phone right now with amgen...they gave me the phone

number

> of amgen/ kineret/ canada at 866-204-3546 (customer care)...so it

> sounds like it is available...marguerite

> > > > Hello All,

> > > > had an appointment at Texas ish Rite in

Dallas

> > > > yesterday. It was the second time in 4 years that we went

with

> > no

> > > > complaints (once earlier this spring)....what a blessing and

> hugh

> > > > relief. was diagnosed at a year of age and had been in

a

> > > > constant flare for 3 1/2 years. The steroid pulses only

seemed

> > to

> > > > tone down the inflammation, the rash was daily, anemia, ESR

115-

> > 30,

> > > > swollen & painful joints, PLTs at times greater than 1

> > > million...many

> > > > of you reading this have been here. Feeling " good " becomes a

> > > > realitive term...you never seem to get totaly healthy.

> > > > has been on high dose IV steroids, MTX, Enbrel and

> was

> > > > finally started on KINERET (this January). As many of you

know,

> > the

> > > > results were dramatic. His labs are normal, no swelling,

rash,

> no

> > > > pain, no arthritis, no fevers....he looks and feels great. He

> has

> > > > gained 7 lbs since April and grown 3 1/2 inches...It has been

a

> > > true

> > > > miracle.

> > > > The reason for this post is to give you all hope. After

> > > talking

> > > > with his rheumatologist, Marilynn Punaro...she informed me

that

> > > they

> > > > know that systemic jra patients OVER PRODUCE INTERLEUKIN-

1...it

> > is

> > > a

> > > > fact. Kineret is an antagonist for IL-1. Also, IL-1 is the

> > > PRECURSOR

> > > > to IL-6 (some of you may have heard about an IL-6 drug coming

> > > > available). She believes that you inhibit IL-1 formation with

> > > Kineret

> > > > and you stop the inflammaion cycle in these kids. She

doesn't

> > > think

> > > > the IL-6 drug is the way to go (not to mention it isn't even

> > > > available in the US). They have studied Enbrel in systemic

kids

> > (on

> > > a

> > > > large scale) and it did not work (not to say that some of the

> > kids

> > > > out there haven't responded...they may have...but for the

> severe

> > > > systemic kids Kineret appears to be the key). Her hopes is to

> > study

> > > > Kineret on a larger group (she has had a hard time getting

> AMGEN

> > to

> > > > support her study because it is a " small patient population " )

> As

> > > you

> > > > know it is a very expensive drug that was originally

developed

> > for

> > > > adults (adults have not responded to it). She has published

an

> > > > abstract recently describing Kineret in 10 patients (

> being

> > > > #6). Nine out of the ten have responded dramatically like

> > .

> > > > Only one patient hasn't responded...sadly enough...it may

have

> > been

> > > a

> > > > situation of too little too late...in that she is now 13 and

> has

> > > had

> > > > systemic symptoms since 18 months of age (it brought tears to

> my

> > > > eyes...god bless her..she is still experiencing fevers,

etc.).

> > She

> > > > thinks that Kineret should be tried as a first line thearpy

> EVEN

> > > > before STEROIDS in controlling inflammation in systemic

> patients.

> > > As

> > > > far as long term effects...we don't know...but, we don't know

> > about

> > > a

> > > > lot of these medications that we are forced to try. She feels

> > that

> > > it

> > > > is safer than some of the longer half life drugs (Enbrel and

> > > > Remicade). Because Kineret has such a short half life it is

> given

> > > as

> > > > a daily injection.

> > > > Well, I just wanted to share our experience and

knowledge

> > from

> > > > yesterday's visit. I hope it may help any of you out there

> that

> > > feel

> > > > lost and without hope in battling this disease. If anyone

wants

> > to

> > > > contact me about Kineret please email me directly at

> > mwestfal " at "

> > > >

> > >

> >

>

ktc.com.

> > > > God Bless and Merry CHristmas, Marguerite and (systemic

5)

> > > >

> > > >

> > > >

> > > >

> > > >