Re: RE: JRA: 's rheumy visit + questions

January 7, 2008

sorry, I was rushed - I was meaning to say she has been waking with drenching

night sweats. Now tonight she woke and cannot return to sleep because her hips

hurt so bad.

Can anyone tell me of their experience with Enbrel? Infectons? Problems?

Successes?

Thanks again,

stressed out mom ()

nancy barnes <nancyb315@...> wrote: Although

I have been absent from the board pretty much lately between and my Mom,

I thought I would give an update and ask a question or two.

Mid-December saw the rheumy and immunologist. 's swelling (and

pain) show no improvement... month 6 on the mtx now. Dr wanted to try one more

month on the mtx with yet another dosage increase. She left so immuno could

visit and expressed she was disappointed I did not advocate better for

her (in my defense, we had been at ER all night and had only an hr of sleep). I

asked the nurse to speak privately with the rheumy; the dr said her only

hesitation starting on Enbrel is her cvid (a genetic defect in her

immune system) - I assured her it's not something we take lightly. She was

wonderful, open, and shared how she wants to have some quality of life

back. She sent us home with detailed info on administering Enbrel; we need to

be sure is absolutely infection free. She explained her thoughts to

, told her she would like to see her involved with some arthritis camps

and the AF. The immuno sent her to a podiatrist to resolve a

toe infection (6 weeks of antibiotics - getting worse). Also, neurologist

referred her to Michigan for treatment to a special center there and we are

working to get all the records there for review. Our hope is this would reduce

one major source of pain for her.

This weekend has slept the better part of three days (I literally could

not wake her last evening to take her mtx), looks terribly pale, and woke up

more swollen this morning. She says she has been waking several times a night

the past two nights, but does not seem to have any fever.

Is it possible to have a flare of a flare? (just kidding) I am wondering if

any of your kids ever have night sweats? Also, any of them on mtx, (she is on

injections) do they lose their appetite? Her stomach is not upset - she just

has lost her appetite in the past 2-3 weeks. She will eat because she knows she

has too, but she has nothing sounds good and she is not hungry. When it is the

Celebrex, she gets pain...there is no pain.

Thanks for listening...and for any answers to my questions. Please continue to

keep in your prayers. I am terrified for her to start the Enbrel with

the cvid, but she has been bad for 2 years now and on mtx since dx Aug.

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

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

January 7, 2008

Don't know if this helps, but had a hard time with his stomach with

mtx oral or injections- didn't seem to make a difference- He would get to

where he threw up before a shot, but on the not having an appetitie, I've

found that when he's feeling really bad or " flaring " he does not have

nearly the appetite that he usually does.

To some people, enbrel is a wonder drug- it would be scary with the other

immune issues, I don't know- the administration of it is not hard- it

looks complicated to start with, but it becomes second nature. One good

thing about enbrel is that I don't believe it's in your system long- so

if an infection/ immune issue comes up you can stop shots and it gets out

of your system pretty quickly.

don't know if this helps or not- you're in our prayers

Jinny (11 pauci?)

On Sun, 6 Jan 2008 20:43:56 -0800 (PST) nancy barnes

<nancyb315@...> writes:

> Although I have been absent from the board pretty much lately between

> and my Mom, I thought I would give an update and ask a

> question or two.

>

> Mid-December saw the rheumy and immunologist. 's

> swelling (and pain) show no improvement... month 6 on the mtx now.

> Dr wanted to try one more month on the mtx with yet another dosage

> increase. She left so immuno could visit and expressed she

> was disappointed I did not advocate better for her (in my defense,

> we had been at ER all night and had only an hr of sleep). I asked

> the nurse to speak privately with the rheumy; the dr said her only

> hesitation starting on Enbrel is her cvid (a genetic defect

> in her immune system) - I assured her it's not something we take

> lightly. She was wonderful, open, and shared how she wants to

> have some quality of life back. She sent us home with detailed info

> on administering Enbrel; we need to be sure is absolutely

> infection free. She explained her thoughts to , told her she

> would like to see her involved with some arthritis camps and the AF.

> The immuno sent her to a podiatrist to resolve a

> toe infection (6 weeks of antibiotics - getting worse). Also,

> neurologist referred her to Michigan for treatment to a special

> center there and we are working to get all the records there for

> review. Our hope is this would reduce one major source of pain for

> her.

>

> This weekend has slept the better part of three days (I

> literally could not wake her last evening to take her mtx), looks

> terribly pale, and woke up more swollen this morning. She says she

> has been waking several times a night the past two nights, but does

> not seem to have any fever.

>

> Is it possible to have a flare of a flare? (just kidding) I am

> wondering if any of your kids ever have night sweats? Also, any of

> them on mtx, (she is on injections) do they lose their appetite?

> Her stomach is not upset - she just has lost her appetite in the

> past 2-3 weeks. She will eat because she knows she has too, but she

> has nothing sounds good and she is not hungry. When it is the

> Celebrex, she gets pain...there is no pain.

>

> Thanks for listening...and for any answers to my questions. Please

> continue to keep in your prayers. I am terrified for her to

> start the Enbrel with the cvid, but she has been bad for 2 years now

> and on mtx since dx Aug.

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

> Try it now.

>

January 7, 2008

Jinny,

she has been in a bad phase a long time but worse recently so that would make

sense about the appetite.

Regarding the Enbrel, it is reassuring to me that it has a short time in the

system so stopping in the event of an infection would be helpful. We are still

pretty new to all these meds as she only moved beyond the nsaids as of August.

I really appreciate your input.

Thank you,

(, 17, poly, cvid, migraines)

P Woods <woodsrp@...> wrote: Don't

know if this helps, but had a hard time with his stomach with