Movin to Embrel

frankiesmum
frankiesmum Member Posts: 20
edited 15. Mar 2011, 07:52 in My child has arthritis
Hi everyone, happy new year to you all!

Haven't been on here for ages but thought i'd update you on Frankies situation. We are currently awaiting 'funding' before Frankie can move onto Embrel. Methotrexate on it's own hasn;t really worked for him. Had a call from the consultant tonight to say that the funding still hasn't been agreed!! What a joke!! He's on steroids and been great on them but now they're reducing??

Has anyone applied for DLA and been successful, I have applied but been refused??

Hope your all well

Michelle x

Comments

  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Wow. I've not heard of anyone who's had funding problems with Enbrel in this country. It is hugely expensive and it was a major concern to me when we moved to this country. I've been hugely impressed that the NHS was giving it based on need rather than budget but hearing your story has dented my belief.

    Good luck, I hope the approval comes through really quickly.

    I've not tried for DLA, but hopefully someone here has experience of that.

    Andy
  • lindseyhall
    lindseyhall Member Posts: 13
    edited 30. Nov -1, 00:00
    Hi, I'm a mum too. Matthew was 18months when he was diagnosed. Please check out my Facebook forum. We really do keep in touch on here and I'm sure you'll find much of what you experience as a family is in common with many of our stories. Bets wishes. Lindsey X
    http://www.facebook.com/permalink.php?story_fbid=10150112588442884&id=12131682883#!/group.php?gid=12131682883
  • lindseyhall
    lindseyhall Member Posts: 13
    edited 30. Nov -1, 00:00
    Regards DLA. Matthew had it until Sept.He's been much better since being on Humira after Embrel started was unsuccessful because of Euvitis. I didn't reapply as we hadn't had a serious flare on the new drugs for at least 6 months. He's quite active now but still has minor illness blips when arthritis tends to play him up.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi frankiesmum, have you had any further news about the enbrel funding? DD

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