some encouragement/perspective needed

January 15, 2011

Hi all,

Tonight I forgot to put 's EMLA cream on at our usual time, so that pushed

the time for her kineret shot to 9:30pm - about 45 minutes later than usual. By

the time I gave her the shot I could see the systemic rash right under the skin,

and it was itching a bit, as it used to before we started kineret. I hate,

hate, hate this disease. And, that rash is such a wicked visual reminder that

nothing is " cured " in my daughter by giving her this nightly shot, as well as

the weekly methotrexate, as well as the daily NSAID, as well as the prednisone!

The meds just hold it all under the surface.

We ARE weaning prednisone, which is great. I took your advice and have weaned

down even slower than the Rheumy's recommendation. We are now on our last .25mg

- and the plan is to discontinue to O - ZERO - next Friday. After that we'll

reduce the methotrexate by 0.2ml every 4 weeks and follow closely with labs.

hasn't had any joint pain or fevers, and I have occasionally seen the

systemic rash on other nights when we've been a bit late with the kineret. So,

I don't think it's the weaning of the prednisone, moreso that she just really

needs that kineret right at the scheduled time. It's just so disappointing and

stressful to me that it's all RIGHT under the surface. Her labs have been

normal for 3 months since starting the kineret, and she is doing very well

clinically, so I'm not saying the meds aren't working. I just want to ask: is

this " as good as it gets " ? Being totally dependent on a nightly kineret shot or

things come right back? That's how 's Rheumy has explained it to us - that

other patients she has on kineret do really well, but every time they try to

wean it things come right back. I'm having a little mommy meltdown tonight. I

am truly so thankful for these meds, but also so sad that she needs them so

much. I guess it's just the cards for . I want to focus more on the

thankfulness and less on the dismay, but I came here just to vent a bit to those

who would understand ...

nn (, 9, systemic, since Oct 09)

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