Re: SYSTEMICS Please read

[Guest guest]

Hi Marguerite,

Thank you so much for sharing your Kineret experience. I'm going to talk to

Eliot's doctor about it during our next visit. Your message was full of hope!

Just what we all need!

I hope keeps well!

Chloe mom to Eliot (Systemic 10)

[Guest guest]

Hi Marguerite,

Glad to hear is still doing so great on the Kiniret.I know how great it

is to finaly find your childs miricle drug coctail.

Thanks again for helping my friend Tammy feel more comfortable with the

Kiniret unfortunately it didn't work for .

The sad thing is they tried doing large scale studies on Kiniret a couple

years ago and they just couldn't get enough kids so they droped it.Without the

studies they have learned that it is very promising for systemics but not so

great for Poly and Pauci.The TNF's still rule there as do systemics with poly

course.At AJAO they talked alot about this and also mentioned that they think

that MRA the Interlukin 6 drug will become a first line treatment for

SoJRA.Looks

like Kiniret might become the 1st though.

I hope continues to do great for years to come.

Hugs

Becki and 6 systemic

[Guest guest]

how can i get this medicine for my son, he lives in bc canada.thank you trish

margueritewestfall <mwestfal@...> wrote:

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 Marguerite,

Thank you for posting this very helpful infomation, i intend to

print it out and keep it in Nicks folder for future reference.

Im so glad that is still doing so well.. he is indeed the

poster child for Kineret )))))

Hugs Helen and (7,systemic)

-- In , " margueritewestfall " <mwestfal@k...>

wrote:

>

> 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)