RE: JRA: 's rheumy visit + questions

January 6, 2008

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.

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