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
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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
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
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