Infliximab Infusions ?

anita01

Hi , I heard yesterday that our consultant is now going ahead with starting Emma (age 8, with SOJIA), on Infliximab infusions at Gosh. Waiting for a date now, but wondered if anyone on here has had experience of this with their child?
Emma is steroid dependant, every time we reduce she flares, Metho didn't help , so we are hoping this will enable her to finally get off the prednisolone,

Many Thanks,
Anita

anniesmum

Hi anita,
just wanted to say that I really pleased that Emma's funding has come through as you seemed to be waiting ages. Annie is on tocilizumab infusions and they were working until we changed for 2 weeks apart to 4 weekly. We were even off the oral steroids for 3 weeks - first time in 15 months! Then the Systemic arthriits as well as in a few joints started to creep back in. More joint injections later and now infusions back to every 2 weeks. So our fingers crossed that this level will keep everything at bay and we can remain off steroids. I will be really interested to hear how Emma gets on with infliximab as I havent heard of that one. Good luck.

ps - how is Emma's growing? I have noticed that after 15 months of oral steroids Annie really hasn't grown very much at all. just another worry to be long list at the moment.

Lucy

Wonkylegs

HI ANita

hope you don't mind me replying! though I'm not a parent dealing with a child and arthritis, I am having Infliximab infusions (since December last year) and I just wanted to say that I hope that they turn out to be the way forward for you and for Emma.

For me the infusions are seeming to work, though at times I do wonder if it's working enough. I guess the whole protocol with children will be different, so I won't go on about how I'm given it.

I'll be thinking of you and hoping that all goes well.

WOnky xx

anita01

Thanks Wonky,
She starts it on friday, so we will have to see, as usual the telling time will be when the steroids are further reduced,
Best wishes,
Anita