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Starting Enbrel and I'm scared

illihorillihor Posts: 283
edited 27. Aug 2010, 02:54 in My Child Has Arthritis
Kayleigh (who is 4) is totally unaware of what awaits her once we get back home off holiday. But I've just had a call and they are def starting Enbrel. Just waiting for the last blood test to come back then it's all go.

I'm dreading what this drug will/could do and how careful we are going to have to be on top of that she will probs start this drug just as she starts school as the nurse said 3 weeks to get everything in place.

She is only back for a week then will have to be off for 3 days to go Bristol for intensive physiotherapy. Then back for a bit then more time off for yet another appointment at Bristol which is 2 hours away by train.

Michelle xxx

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    It's a big step, starting an anti-TNF. It has to be injected: when I was on it I did jabs twice week and I had no physical side-effects at all. I rested after each one for an hour or so, and I didn't suffer any nausea etc. Will her injections be twice weekly or less than that? I suppose it depends on dosage, God she's young for all this, I can only see it from an adult perspective. Enbrel was not a success story for me but I know plenty for whom it has worked. I sincerely hope that K falls into that category, and that she, and you, can cope with it all. The very best of luck. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylambsandylambs Posts: 71
    edited 30. Nov -1, 00:00
    Oh Michelle, I totally understand how you feel. Just 8 months ago I was where you are now. It's a big step; we only went to the Enbrel when the MTX wasn't working to suppress the flares but was also causing liver damage - it took a while for me to accept it was the best course of action.

    With hindsight (a beautiful thing!) I wish we'd gone for the Enbrel when it was first offered. Enbrel has most definitely been a "magic" medicine for my daughter. Not one flare since we started, liver function back to normal, and she's happy and healthy, plus she's finally started to gain some weight. I don't want to force the rose tinted specs, I know it doesn't work like this for everyone, but it's got to be worth trying.

    Good luck, and I'm happy to talk more if you would like.

    Cheers,
    Andy
  • marion1952marion1952 Posts: 996
    edited 30. Nov -1, 00:00
    Dear Michelle

    Just to say your post about Kayleigh really touched me and I do hope you enjoy your holiday and everything goes OK for her with Enbrel and the physiotherapy and starting school..

    Dear Andy

    I was really heartened to read your post about your daughter's response to Enbrel. I'm so pleased it has enabled her to lead a full (and hopefully painfree) chldhood again. Of all the horrible diseases/illnesses that are around, at least with inflammatory arthritis there are some good drugs around and lots of research being done..

    Every good wish to you both, Michelle and Andy, and, of course, your very very brave children.


    Marion x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hi illihor, how are things? Has she started enbrel yet? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    thanks for asking DD but no she hasn't started yet. Her bloods finally came back last week (thursday) which allowed for the go ahead. Can't remember which one they were waiting on but it's been 3 weeks just for that one hmmmm.

    The rheumy nurse has called me to say they are getting it all sorted and as of last week should be about 3 weeks so hopefully 2 weeks to go. The company has yet to call me and arrange an appointment to get all the nitty gritty stuff sorted out.

    Not sure if she will start it before her 3 days stint in Bristol Hospital or not.

    Michelle xxx
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Thank you for filling me in. I will do my best to remember and ask again! I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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