KINERET has worked wonders

[Guest guest]

Hi Marguarite,

WhooHoo! Glad to hear that responded so well to the Kineret.s systemic and was maxed out on everything they could give him.Moderate doses of steroids were the only thing that would settle things down.His miricle drug was Enbrel,it worked wonders for him.Valentines we party because it will be exactly 1yr off the steroids.

I hope things continue to get better.

Hugs

Becki and 5 systemic

[Guest guest]

Hello All,

My son (age 4, systemic JRA) was diagnosed at a year of age. He

has had severe systemic disease ( at his sickest...ESR as high as 115

and Hgb 6, PLTS over 1 million) We have gone down many paths (Motrin,

steroids, MTX, Enbrel) with little relief from this disease. We

finally started Kineret this past January. has had a rash

everyday for the last 3 years....a constant reminder that the disease

has not been controlled. After the FIRST dose of Kineret his rash

has disappeared, he seems to have more energy and almost no pain in

his joints, the swelling in his wrist and ankles has been

dramatically reduced. This is the first medication that has truly

made a difference. I just wanted to share this information with all

of you that are dealing with systemic JRA....this has been truly a

life changing experience. Sincerely, Marguerite and

P.S. Some of you may already know that this drug (Kineret) is an

interleukin-1 antagonist....they think that systemics seem to over

produce this inflammatory substance and this drug is able to " soak "

it up like a sponge....They also think that interleukin-6 is very

high and definitely a major player in kids that have systemic JRA.

They are still working on releasing an interleukin-6 antagonist. I

guess this just makes me very hopeful that we are on the brink of

truly treating this disease.

P.S.S. Kineret is given as a subcutaneous shot daily...

[Guest guest]

Hi Becki,

We'll be celebrating with you, in spirit, in recognition of this big

milestone. Josh has already been talking about the party we're going to

have when he gets off of prednisone. It's been a long time coming so

we'll definitely have to do something special.

Enjoy the day! Hugs for !

Aloha,

Georgina

Arthurnator@... wrote:

> Hi Marguarite,

> WhooHoo! Glad to hear that responded so well to the Kineret.s

> systemic and was maxed out on everything they could give him.Moderate

> doses of steroids were the only thing that would settle things down.His

> miricle drug was Enbrel,it worked wonders for him.Valentines we party

> because it will be exactly 1yr off the steroids.

> I hope things continue to get better.

> Hugs

> Becki and 5 systemic

[Guest guest]

Hi Marguerite,

I just wanted you to know how happy I was to hear the wonderful news.

Thanks so much for sharing it with us. I am so excited for your ,

that he responded so well and so very quickly. After the very first

dose!?! That's incredible. It must have been so encouraging for you to

see the rash just dissolve away like that.

I remember our friend/old group member in Ireland, who had very fast and

dramatic improvements from Kineret, too. Elliot's Dad also said

it had worked extremely well for his son, when Enbrel didn't seem to

make much of a difference at all, in controlling his systemic JRA.

I'm so happy that after some trial and error things are finally working.

I hope the improvements has experienced will be long lasting.

Thanks again, for letting us all know.

Aloha,

Georgina

margueritewestfall wrote:

> Hello All,

> My son (age 4, systemic JRA) was diagnosed at a year of age. He

> has had severe systemic disease ( at his sickest...ESR as high as 115

> and Hgb 6, PLTS over 1 million) We have gone down many paths (Motrin,

> steroids, MTX, Enbrel) with little relief from this disease. We

> finally started Kineret this past January. has had a rash

> everyday for the last 3 years....a constant reminder that the disease

> has not been controlled. After the FIRST dose of Kineret his rash

> has disappeared, he seems to have more energy and almost no pain in

> his joints, the swelling in his wrist and ankles has been

> dramatically reduced. This is the first medication that has truly

> made a difference. I just wanted to share this information with all

> of you that are dealing with systemic JRA....this has been truly a

> life changing experience. Sincerely, Marguerite and

>

> P.S. Some of you may already know that this drug (Kineret) is an

> interleukin-1 antagonist....they think that systemics seem to over

> produce this inflammatory substance and this drug is able to " soak "

> it up like a sponge....They also think that interleukin-6 is very

> high and definitely a major player in kids that have systemic JRA.

> They are still working on releasing an interleukin-6 antagonist. I

> guess this just makes me very hopeful that we are on the brink of

> truly treating this disease.

> P.S.S. Kineret is given as a subcutaneous shot daily...