Remicade

[Guest guest]

We went and saw Caroline's rheumy yesterday. It was a really great

appointment! Yeah! All her joints look amazing. Also, for the first time in

a year her sed rate is NORMAL!!! She has determined that the Enbrel is

obviously working for all her joints. Unfortunately, it is doing nothing for

her eyes. We are going to try cyclosporine, but are hesitant about the

success of it. We are also unsure if Caroline can tolerate it since she has

such sensitive organs.

As a side note, her rheumy said to me that she is not sure if Caroline was

diagnosed correctly in the beginning and that she has always suspected that

she was actually systemic and not poly. I didn't know how to take that, but

she said that nothing would have changed in her treatment with either

diagnosis.

Lastly, we talked about Remicade. We are approaching the one year point on

Prednisone and Pred Forte drops. That is our rheumy's max for these drugs.

She says she needs to be completely off both by the one year mark (January)

and that we need to find something to supplement it. Cyclosporine might

work, but she's not confident it will. She also doesn't think that Enbrel

will be enough without the prednisone, so we are left with Remiciade

infusions. The problem is she has never given them to children Caroline's

age and she isn't sure of how many other rheumy's have tried it. Does anyone

have any thoughts or history with Remicade on a three year or less??

Caroline will be three in January so I think that is when we would start

it...

Thanks everyone!

Alia and Caroline, age 2, poly and uveitis