weaning prednisone - hard not to be afraid

[Guest guest]

Hi All,

Just wondering what your experiences are with weaning off of prednisone.

has been on kineret - .11ml - for about 5 weeks. Her first labs after starting

kineret (about 2 weeks ago) were almost normal with normal inflammation levels

and hemoglobin. So, we immediately started her on a slow wean from the 5mg of

prednisone. When going down to 4mg we didn't see any effects. But last

Thursday we went to 3mg and it seems a harder transition. She's not having

fevers, but more like temperature fluctuations - one minute hot, one minute

cold. Last night I saw just a tiny bit of rash - I mean like two small lines -

when it was time to do her kineret injection. She's mentioned her ankle hurting

just a bit the last two nights. And, she also seems more fatigued - but it

could be the usual fatigue she has on weekends because of methotrexate on

Fridays.

After almost a year of uncontrolled systemic, the last 5 weeks on kineret have

been almost bliss. I'm so on edge about everything coming back when we take

away the prednisone. Or, maybe these things we are seeing are just adjustments

to her adrenal gland switching back on. I've read that the body naturally makes

4mg corticosteroid, so now that we are under the 4mg dose of prednisone maybe

her body will have a little transition switching back on. Thoughts anyone?

Thanks,

nn (, 9, systemic)