About Kineret ( was ... Re: Cindy and n)

[Guest guest]

Hi Georgina,

Hey, good question....Basically, they started the Kineret after he

failed Enbrel...I think that was to prove to the insurance company

that ALL PEDIATRIC drugs were tried...and then they gave the go ahead

for the Kineret. If anyone is interested...we pay about $300 for a

box....the total cost is about $1200 for a box (an adult's month

supply).....An adult would receive 1 cc injections and we give

(44 lbs.) 0.175 cc'c daily.... So it lasts a lot longer. Although,

will be included in this " study " , when in fact it might just be

a paper describing patient's individual response to the drug?...there

was no talk of the drug being withheld at any point. I tell you....I

would dig ditches or swim across the ocean to get this medicine. I

even wonder why he is on the MTX...it never got his symptoms under

control....and Kineret was almost overnight making a difference. The

rash that we looked at for 3 1/2 years literally disappeared after

one shot.... for the first time has been swimming this year(he

has never felt well enough)...the little guy actually has a

tan...something we never thought he could get....he used to just turn

into a strawberry if we took him out in the Texas heat....He has

grown an inch and a half between March and June....He is an all

together different child. He has not required any Motrin since

January....unbelievable...considering we were going through goverment

sized bottles of the stuff. I guess that is why I continue to read

the jra list...in hopes of giving some parent out there hope that

things can be different....Encourage your doctor's to learn more

about Kineret in the treatment of SYSTEMIC JRA....Thank you for all

of your support, Marguerite and

> > Hi ,

> > I read your message to Jalyn....and I couldn't agree more with

you.

> > It is sooo true about feeling up and down...with each and every

> > flare. Our son is now 4 1/2 (diagnosed at a year of

age)....He

> > too was in a constant flare since the onset of the disease. I

read

> > that n is still not in remission....Have you heard of

Kineret?

> > My son is treated at Texas ish Rite in Dallas. They are

coming

> > out with a study shortly...our son is patient number 6 in the

> > research. Bascially, all of their children with systemic disease

are

> > responding to Kineret. It would be worth trying? Best of luck

and

> > God Bless, Marguerite and (4 systemic)P.S. the results have

> > been beyond our wildest dreams.... has made truly a full

> > recovery!---