Re: 2 years, 7 months, 1 week and 6 days.....

[Guest guest]

Helen, awesome news! I hope he does great and never has to go back on it! How

has he been feeling?

Beth (Hannah, 10, unspecified arthritis; asthma; gerd)

hburger64 <hburger64@...> wrote:

after starting prednisone, took his last dose yesterday!!!

I sometimes wondered if this day would ever come.

It's been way over due....

hugs Helen and prednisone free !! (9,systemic)

[Guest guest]

Hi Helen-

Terrific news!!! I bet Nick starts to sprout up now..... I hope he's feeling

great. And I really hope and pray that's the last regular pred you all ever

have to endure again!!!!

Colleen

hburger64 <hburger64@...> wrote:

after starting prednisone, took his last dose yesterday!!!

I sometimes wondered if this day would ever come.

It's been way over due....

hugs Helen and prednisone free !! (9,systemic)

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Helen, what great news and I know you and he must be so happy. My hope is

that he never have to take another dose.....

Donna

[Guest guest]

Wonderful news! I am praying that nothing but more good news will

follow! :-)

(drea 11 systemic jra/gerd)

>

> after starting prednisone, took his last dose yesterday!!!

>

> I sometimes wondered if this day would ever come.

>

> It's been way over due....

>

> hugs Helen and prednisone free !! (9,systemic)

>

[Guest guest]

Hooray for Nick!!!!

Alia and Caroline, age 4, poly and uveitis

2 years, 7 months, 1 week and 6 days.....

after starting prednisone, took his last dose yesterday!!!

I sometimes wondered if this day would ever come.

It's been way over due....

hugs Helen and prednisone free !! (9,systemic)

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[Guest guest]

Helen,

That is WONDERFUL news! I hope this is a sign of better times ahead!

Liz

_____

From: [mailto: ] On Behalf

Of hburger64

Sent: Wednesday, October 11, 2006 10:00 AM

Subject: 2 years, 7 months, 1 week and 6 days.....

after starting prednisone, took his last dose yesterday!!!

I sometimes wondered if this day would ever come.

It's been way over due....

hugs Helen and prednisone free !! (9,systemic)

[Guest guest]

Three Cheers for !

Hip Hip

Hip Hip

Hip Hip

HOORAY!!!

http://www.kidsgetarthritistoo.org.au

[Guest guest]

--Beth,

Thanks, Nick is feeling great, the 3 days of higher doses of

prednisone not only helped with the vimiting, it also had the added

benefit of making his ankles feel much better ( I had no idea they

were even still bothering him) and since then hes not had any sore

or stiff joints )))

hugs Helen and (9,systemic)

- In , Beth Yohnk <yohnkmom@...> wrote:

>

> Helen, awesome news! I hope he does great and never has to go

back on it! How has he been feeling?

>

> Beth (Hannah, 10, unspecified arthritis; asthma; gerd)

>

> hburger64 <hburger64@...> wrote:

> after starting prednisone, took his last dose

yesterday!!!

>

> I sometimes wondered if this day would ever come.

>

> It's been way over due....

>

> hugs Helen and prednisone free !! (9,systemic)

>

>

>

>

>

>

>

[Guest guest]

-Hi Colleen,

Thanks, I sure hope this will be the start of his growing. I never

thought this day would come. It was such a battle to get off the

daily pred. But I am so happy we did it. I know we will more than

likely need bursts of steriods in the future, but i hope we never

ever have to go on it long term. ( nick still gets 25mg of solu-

medrol with his remicade)

How is Caitlin doing?? how is the trial going?? is it helping her??

hugs Helen and (9,systemic)

-- In , Colleen <bookissmom@...> wrote:

>

> Hi Helen-

>

> Terrific news!!! I bet Nick starts to sprout up now..... I hope

he's feeling great. And I really hope and pray that's the last

regular pred you all ever have to endure again!!!!

>

> Colleen

>

> hburger64 <hburger64@...> wrote:

> after starting prednisone, took his last dose

yesterday!!!

>

> I sometimes wondered if this day would ever come.

>

> It's been way over due....

>

> hugs Helen and prednisone free !! (9,systemic)

>

>

>

>

>

>

> ---------------------------------

> All-new - Fire up a more powerful email and get

things done faster.

>

>

[Guest guest]

Congratulations Nick! I hope all is going well. It made me think. Joe is at over

5 years of pred and over 5 years of diagnosis. That is okay, as long as she is

able to do what she needs/wants I guess we are okay with it.

e

---------------------------------

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[Guest guest]

Hi Helen:

I am thrilled to hear the Prednisone is done. Here's to it never being a

part of Nick's life again. Congrats.

Take care.

Patty

[Guest guest]

Hi Helen,

Just checking in to see how Nick is doing. I was very pleasantly surprised to

see your message about him finally tapering completely off the daily prednisone.

I hope Nick's arthritis symptoms will remain very well controlled without it and

that he has far better success than Josh. Unfortunately, Josh lasted only about

12 weeks before we had to return ... once he finally managed to get off it. It's

been a balancing act for us since the very beginning ~ May, 1995.

We saw the rheumatologist on Friday. I expressed my concerns about the Enbrel

not seeming to be as effective anymore but Josh wants to keep taking it. Feels

better with it than without it. However, I had really hoped - at least initially

- that Enbrel would do away with the need for Prednisone (Josh started taking

Enbrel during the first flare-up after discontinuing the daily Prednisone.) That

hasn't happened. He's currently STILL on 10mgs a day, since the flare in July

and continues to have pain and range of motion difficulties with his wrists and

right elbow. At least the other areas aren't quite so bothersome - for the time

being.

Hugs for Nick,

Georgina & Josh (systemic JA)

Re: 2 years, 7 months, 1 week and 6 days.....

-Hi Colleen,

Thanks, I sure hope this will be the start of his growing. I never

thought this day would come. It was such a battle to get off the

daily pred. But I am so happy we did it. I know we will more than

likely need bursts of steriods in the future, but i hope we never

ever have to go on it long term. ( nick still gets 25mg of solu-

medrol with his remicade)

How is Caitlin doing?? how is the trial going?? is it helping her??

hugs Helen and (9,systemic)

-- In , Colleen <bookissmom@...> wrote:

>

> Hi Helen-

>

> Terrific news!!! I bet Nick starts to sprout up now..... I hope

he's feeling great. And I really hope and pray that's the last

regular pred you all ever have to endure again!!!!

>

> Colleen

>

> hburger64 <hburger64@...> wrote:

> after starting prednisone, took his last dose

yesterday!!!

>

> I sometimes wondered if this day would ever come.

>

> It's been way over due....

>

> hugs Helen and prednisone free !! (9,systemic)

>

>

>

>

>

>

> ---------------------------------

> All-new - Fire up a more powerful email and get

things done faster.

>

>

[Guest guest]

-Georgina.

Good to hear from you. Nick is doing amazingly well. No fall out

from the prednisone total withdrawl ( OO!!)

Im sorry to hear is still struggling. It does sound like the

enbrel is not " doing its thing " completely. Nick only managed 9

months of enbrel before it stopped being effective.

We been doing remicade for a year now and I see such a differnce in

Nick and it must be going good, we were finally able to ditch the

pred.

heres to easier days ahead and more relief for Josh.

hugs Helen and (9,systemic)

-- In , " Georgina " <gmckin11@...> wrote:

>

> Hi Helen,

>

> Just checking in to see how Nick is doing. I was very pleasantly

surprised to see your message about him finally tapering completely

off the daily prednisone. I hope Nick's arthritis symptoms will

remain very well controlled without it and that he has far better

success than Josh. Unfortunately, Josh lasted only about 12 weeks

before we had to return ... once he finally managed to get off it.

It's been a balancing act for us since the very beginning ~ May,

1995.

>

> We saw the rheumatologist on Friday. I expressed my concerns about

the Enbrel not seeming to be as effective anymore but Josh wants to

keep taking it. Feels better with it than without it. However, I had

really hoped - at least initially - that Enbrel would do away with

the need for Prednisone (Josh started taking Enbrel during the first

flare-up after discontinuing the daily Prednisone.) That hasn't

happened. He's currently STILL on 10mgs a day, since the flare in

July and continues to have pain and range of motion difficulties

with his wrists and right elbow. At least the other areas aren't

quite so bothersome - for the time being.

>

> Hugs for Nick,

> Georgina & Josh (systemic JA)

>

> Re: 2 years, 7 months, 1 week and 6 days.....

>

>

> -Hi Colleen,

>

> Thanks, I sure hope this will be the start of his growing. I

never

> thought this day would come. It was such a battle to get off the

> daily pred. But I am so happy we did it. I know we will more

than

> likely need bursts of steriods in the future, but i hope we

never

> ever have to go on it long term. ( nick still gets 25mg of solu-

> medrol with his remicade)

>

> How is Caitlin doing?? how is the trial going?? is it helping

her??

>

> hugs Helen and (9,systemic)

>

> -- In , Colleen <bookissmom@> wrote:

> >

> > Hi Helen-

> >

> > Terrific news!!! I bet Nick starts to sprout up now..... I

hope

> he's feeling great. And I really hope and pray that's the last

> regular pred you all ever have to endure again!!!!

> >

> > Colleen

> >

> > hburger64 <hburger64@> wrote:

> > after starting prednisone, took his last dose

> yesterday!!!

> >

> > I sometimes wondered if this day would ever come.

> >

> > It's been way over due....

> >

> > hugs Helen and prednisone free !! (9,systemic)

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > All-new - Fire up a more powerful email and get

> things done faster.

> >

> >