Also switching meds for uveitis - orencia

August 13, 2008

Hey all, remember us? I don't chat often at all but I did ask about

moving to Illinois.

We have new dr.s at St. Louis chilrens. Dd's arthritis is/has been

fine for the last several years. She has had one flare a few months

ago. We added naproxen for a time till it went away. The humira isn't

working to help her uveitis like remicade did.

She stopped taking that because a previous dr noticed her making

antibodies to it. So he switched her to humira and soon after

(probably 4 mos) we moved to IL.

Her eyes have not been in a constant flare since then but they

reflare so often she doesn't make it to the 6 week follow up appts.

KWIM? This has been going on the whole time we've been in this new

state with new drs. Since Nov of last year. It is likely

physiological changes in dd, (and the use of humira?) but the dr.s

are slow to respond. We're not used to that, nor comfortable with

that.

New rheum wants to put her on Orencia but admits that there is no

research to suggest it will help. Since it has just become approved

they have used it with one other patient who doesn't have uveitis.

Is there ANY indication this helps uveitis? Her old dr.s had talked

about adding cyclosporen or something like that. Would that be

better?

Should we go back to the old drs (eye and rheums) for consultation?

I'm not happy with the dr.s since we got here. She ends up having to

have 2 different eye drs just to manage this now and it keeps

recurring. The rheums wouldn't listen to our concerns for a long

time. We have even visited a second rheum,(3 hours away) a follow up

appt to that is end of Aug. Family have recomended we try Shriners in

St. Louis.

I guess this is a lot for one single post. Sorry, thanks for

listening.

Lorie and Libby (poly w/uveitis since 3yrs)

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