Re: Ibuprofen isn't cutting it...

[Guest guest]

Thank you soo much for being a GREAT mom and a GREAT friend.Do you really

realize how many people you have helped because of this list ? Yes,we have lost

several children but think of the hundreds you have saved.Without you I doubt

would be where he is today.You... told us about the Enbrel study back when

was barely 4 yrs old.He is now over 1 yr off MTX and now off of Enbrel.Not

only do I feel Dr. Lovell is responsible for this but you too.

TYSM.

Becki and " THE BAREFOOT TN FLASH "

________________________________

From: Georgina <gmckin11@...>

Sent: Thu, February 17, 2011 8:43:59 PM

Subject: Re: Ibuprofen isn't cutting it...

Ditto for my son, . Long-term use of a daily NSAID has been a part of

his treatment regime since May of 1995. He trien several types in the

beginning but found through trial and error that the most effective, for

him, has been Indomethacin. Twice a day. Morning and evening. For the past

few months he's had a new rheumatologist. At age 21, he needed to transition

from a pediatric rheumatologist he'd seen since the age of six to a doctor

who treats adults. Well, after a few visits the new doc felt he was doing so

well that he no longer needed the 50mg Indomethacin twice a day. He'd been

in a medicated remission with no arthritic symptoms for close to two years!

Unfortunately, by day three, Josh was in pretty bad shape. Even morning

stiffness had returned and I think he'd forgotten how rough that was. Or had

wanted to forget, at least. He had really sore ankles, knees, wrists, and

neck. His general sense of well-being was replaced by stiffness, aches, and

pains. Not good.

Josh is informed about the associated risks, particularly with long-term

use, and he knows from personal experience about the dangers (hn the past

he's had experience with gastrointestinal bleeding,duodenal inflammation,

ulceration). However, he eventually phoned the doc to tell him his body just

wasn't ready for the change yet. He missed school and he missed work and he

was worried that it would only get worse if he didn't get back on schedule

with an evening dose again.

He told me he'd rather feel pretty good day to day and risk not living quite

as long than have to live with so much pain everyday that he couldn't do the

things that were important to him., like going to school and going to work

and being able to socialize.

Seems that even after all these years the arthritis is still just waiting

for a chance to rear it head.

Fortunately, though, Josh is on the med again : )

Aloha,

Georgina

Re: Ibuprofen isn't cutting it...

My daughter has been taking an NSAID since August 2001 I think.

Currently--and for most of the time it has been Celebrex. She also takes

MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

early days--and Remicade--and a bunch of other medications. And she takes

some other things too but for her the Celebrex does make a difference in her

day to day pain and ability so she is still taking it about 10 years later.

e, mom to 'joe' 24 poly+

[Guest guest]

Georgina made this list. This list saved my daughter's life. I don't have to

say anything more. (n, 22, systemic and alive because of this list)

On Feb 18, 2011, at 9:50 PM, Becki Larson wrote:

> Thank you soo much for being a GREAT mom and a GREAT friend.Do you really

> realize how many people you have helped because of this list ? Yes,we have

lost

> several children but think of the hundreds you have saved.Without you I doubt

> would be where he is today.You... told us about the Enbrel study back

when

> was barely 4 yrs old.He is now over 1 yr off MTX and now off of

Enbrel.Not

> only do I feel Dr. Lovell is responsible for this but you too.

> TYSM.

> Becki and " THE BAREFOOT TN FLASH "

>

> ________________________________

> From: Georgina <gmckin11@...>

>

> Sent: Thu, February 17, 2011 8:43:59 PM

> Subject: Re: Ibuprofen isn't cutting it...

>

> Ditto for my son, . Long-term use of a daily NSAID has been a part of

> his treatment regime since May of 1995. He trien several types in the

> beginning but found through trial and error that the most effective, for

> him, has been Indomethacin. Twice a day. Morning and evening. For the past

> few months he's had a new rheumatologist. At age 21, he needed to transition

> from a pediatric rheumatologist he'd seen since the age of six to a doctor

> who treats adults. Well, after a few visits the new doc felt he was doing so

> well that he no longer needed the 50mg Indomethacin twice a day. He'd been

> in a medicated remission with no arthritic symptoms for close to two years!

>

> Unfortunately, by day three, Josh was in pretty bad shape. Even morning

> stiffness had returned and I think he'd forgotten how rough that was. Or had

> wanted to forget, at least. He had really sore ankles, knees, wrists, and

> neck. His general sense of well-being was replaced by stiffness, aches, and

> pains. Not good.

>

> Josh is informed about the associated risks, particularly with long-term

> use, and he knows from personal experience about the dangers (hn the past

> he's had experience with gastrointestinal bleeding,duodenal inflammation,

> ulceration). However, he eventually phoned the doc to tell him his body just

> wasn't ready for the change yet. He missed school and he missed work and he

> was worried that it would only get worse if he didn't get back on schedule

> with an evening dose again.

>

> He told me he'd rather feel pretty good day to day and risk not living quite

> as long than have to live with so much pain everyday that he couldn't do the

> things that were important to him., like going to school and going to work

> and being able to socialize.

>

> Seems that even after all these years the arthritis is still just waiting

> for a chance to rear it head.

>

> Fortunately, though, Josh is on the med again : )

>

> Aloha,

> Georgina

>

> Re: Ibuprofen isn't cutting it...

>

> My daughter has been taking an NSAID since August 2001 I think.

> Currently--and for most of the time it has been Celebrex. She also takes

> MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

> early days--and Remicade--and a bunch of other medications. And she takes

> some other things too but for her the Celebrex does make a difference in her

> day to day pain and ability so she is still taking it about 10 years later.

>

> e, mom to 'joe' 24 poly+

>

>

[Guest guest]

It’s so good to get an update on Josh and to hear that he’s doing well, in

spite of still needing all the meds. And he’s so grown up~~~ I still remember

the little boy I met in Minneapolis all those years ago!

Liz

From: [mailto: ] On Behalf Of

Georgina

Sent: Thursday, February 17, 2011 9:44 PM

Subject: Re: Ibuprofen isn't cutting it...

Ditto for my son, . Long-term use of a daily NSAID has been a part of

his treatment regime since May of 1995. He trien several types in the

beginning but found through trial and error that the most effective, for

him, has been Indomethacin. Twice a day. Morning and evening. For the past

few months he's had a new rheumatologist. At age 21, he needed to transition

from a pediatric rheumatologist he'd seen since the age of six to a doctor

who treats adults. Well, after a few visits the new doc felt he was doing so

well that he no longer needed the 50mg Indomethacin twice a day. He'd been

in a medicated remission with no arthritic symptoms for close to two years!

Unfortunately, by day three, Josh was in pretty bad shape. Even morning

stiffness had returned and I think he'd forgotten how rough that was. Or had

wanted to forget, at least. He had really sore ankles, knees, wrists, and

neck. His general sense of well-being was replaced by stiffness, aches, and

pains. Not good.

Josh is informed about the associated risks, particularly with long-term

use, and he knows from personal experience about the dangers (hn the past

he's had experience with gastrointestinal bleeding,duodenal inflammation,

ulceration). However, he eventually phoned the doc to tell him his body just

wasn't ready for the change yet. He missed school and he missed work and he

was worried that it would only get worse if he didn't get back on schedule

with an evening dose again.

He told me he'd rather feel pretty good day to day and risk not living quite

as long than have to live with so much pain everyday that he couldn't do the

things that were important to him., like going to school and going to work

and being able to socialize.

Seems that even after all these years the arthritis is still just waiting

for a chance to rear it head.

Fortunately, though, Josh is on the med again : )

Aloha,

Georgina

[Guest guest]

My daughter started out on high doses of ibuprofen and luckily, tolerated

the dosage well. The ibuprofen wasn't giving the results the rheumy wanted so

she was started on naprosyn. That was 10 yrs ago and she has been in remission

since. I am hoping this gives some of you hope that remission can happen. Now my

oldest has crohns so he is on Remicaid. He actually saw the same rheumy as

did and was glad to see that was continuing to do well.