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Re: The taper begins....

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Colleen,

OMG,I am so happy for you and Cailtlin.At AJAO your babys trials with JRA

were just heartbreaking.I am just tickled that you have finaly found a drug that

is helping.

Everything crossed on a sucessful steroid taper.

Hugs

Becki and 6 systemic

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In a message dated 10/7/04 12:54:43 PM Eastern Daylight Time,

bookissmom@... writes:

>

> Please keep your fingers crossed and prayers up :)

> Thanks-

> Colleen

> mom to Caitlin (6, systemic)

>

Hi Colleen:

What wonderful news WHOHOO, oops should be whispering right:) I hope and

pray Caitlin continues to improve daily and the pred. tapers goes smoothly.

Take care.

Patty

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Colleen,

This is such GREAT NEWS and thanks for sharing your " cautious " joy.

One month of no pain is fantastic. I'll be praying for a smooth

pred. taper! Who cares if you get to be in the MRA trial as long as

Caitlin continues to do well. I'll be very curious to see if the

sed and CRP continue to drop. Cheers girl.

Stacia and Hunter 8 systemic, iritis

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Hi Colleen,

I am so happy to hear that things are heading in a such a positive

direction for Caitlin. I truly understand your feelings and I'm right

there with you, hoping that everything will at least remain stable or,

better yet, continue to improve. It's so uplifting, to hear about other

children who are doing better over the course of time.

Wishing both of you much success with the plans to taper!

Aloha,

Georgina

bookissmom wrote:

>

> Hi all-

> We had a great visit with the doc this week and things are really

> moving in the right direction. I don't know how to show in type that

> I am whispering, but you get the idea! I'm afraid to say it aloud as

> if I am tempting fate. It feels a bit like a dream.... and I hope it

> lasts.

> Caitlin's Sed is down to 41 and her CRP is down to 4.2. I know that

> is still high and for many, that may seem in the " bad " range. But two

> months ago, she was at 111 and 16.7. What's more, she has not had any

> morning stiffness since September 7 - one month ago today. And no

> fevers. Her activity level is up, her fatigue is down, and her

> temperament is vastly improved (so is mine!). I think that the Humira

> is working. The doc think it is the Humira in combo with the cytoxan

> (which we started four months ago) - which sort of makes sense, as she

> had failed the other TNF blockers in the past.

>

> In any case, we have put off the most recent pred pulse. She was only

> on 3mg a day. We are reducung to 1.5 this week and next week will

> attempt without it at all. Caitlin has been on oral prednisone since

> DX in July of 2001. This could be a huge milestone!!!

>

> Ironically, I have been one anxiously waiting for the MRA trials.

> Now, if and when they start the trials, and if there is a trial site

> near us, Caitlin might be excluded due to this success with Humira.

> Well, one day at a time and I will take the success no matter how it

> comes!

>

> Please keep your fingers crossed and prayers up :)

> Thanks-

> Colleen

> mom to Caitlin (6, systemic)

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