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Infleximab, anyone waiting to get ill to have it again!!!!!!

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Ulcerative Colitis
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Posted 10/12/2009 12:52 PM (GMT 0)
How inhumane that anyone should have to get so ill.
I've had two lots of three infusions one set last year and one set just and it was fantastic. Felt so well, even started riding my bike again!!!! Was under impression that could have it every 8 weeks but no, I can't because of money money money have to wait until I get really ill again before I'm able to have another infusion.
Makes me so mad. Is disgusting.
NICE say they want to promote good health and prevent poor health but this is a joke that anyone should have to wait to get that ill when they know it works for me and having it to maintain my good health makes so much more sense.
I know so many people must be in the same boat as me but haven't been able to speak to anyone.
I have written to NICE and to my MP but have not heard a response as of yet and half expecting not too. It is so dis -hearting.
Posted 10/12/2009 1:08 PM (GMT 0)
Where are you? I'm in the USA, & it's approved here & covered by most insurers- with the correct diagnosis, either RA or UC, & I think for some type of psoriasis also. I think it's awful that govt. insurers like the NHS in Britain took Remicade off their approved drug list... See, here in the States, the drug companies & lobbyists are far too powerful for that too happen. You could get denied on an individual basis, but the drug itself won't be denied. Big money indeed! Sorry that you hacve to deal with this- I'm lucky, am going on 3 years of infliximab... but if it makes you feel any better, it does seem to lose effectiveness after a while, for most people! For instance, I'm in the bathroom right now, on my laptop!
Posted 10/12/2009 1:32 PM (GMT 0)
Same question....where are you located? If you need help, contact the Centecor people that produce Remicade; maybe they can help with payment. The site is www.centacor.com
Posted 10/12/2009 4:13 PM (GMT 0)
I assume you're in the UK. I read that for some reason they determined Inflixamib to be not effective for UC, so didn't add it to their approved drugs. I'm sorry you're suffering because of that decision. There are plenty of us here who find it very effective - in fact, it has been the only thing that's effective for me.

I hope you can work something out so you can feel better.
Posted 10/12/2009 4:38 PM (GMT 0)
Sorry yes am in the UK is so frustrating that it is different depending on where you live.
Makes me laugh that they say things like it is not effect for UC when we prove it does.
Hoping my MP will do something, just feel helpless.
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