Infliximab Infusions ?

anita01
anita01 Member Posts: 43
edited 23. May 2011, 05:43 in My child has arthritis
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 :smile:

Comments

  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    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
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    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
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    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

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