Infliximab Infusions ?
anita01
Member Posts: 43
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
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
0
Comments
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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.
Lucy0 -
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 xx0 -
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,
Anita0
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