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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Yearly review of infliximab UK


12-24-2013, 06:01 AM   #1
xX_LittleMissValentine_Xx
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Yearly review of infliximab UK

Hi everyone,

I had an appointment with my GI two weeks ago, and mostly I am doing really well on infliximab. I said I wasn't quite feeling as well since I had stopped Azathioprine too but he was reluctant to use combination therapy due to the increased cancer risks. He said we always have that to fall back on if we need it.

So anyway appointment is going fine, he is passing me blood test forms and kinda saying goodbye, he asks me to book me an appointment for four months time and says we will review if I stay on the infliximab in march... That last bit didn't quite sink in until I was on the other side of the door!

So I spent that afternoon feeling upset and worried that I would be coming off infliximab after a year. I don't want to, I want to stay on it! I remember reading somewhere on here that the NHS guidelines recommend a year?? If anyone knows where I could find these guidelines I would really appreciate it.

I asked the infusion nurse yesterday while I was having my infusion and she said it has to be reviewed every year due to it costing so much and so many people being on it. She said if I am doing well I should stay on it but the doctors have to really justify it.

So I feel fairly sure that my doctor wouldn't take me off it as it is going so well, but I kinda want to find as much information as possible about this for piece of mind, or to argue my case for staying on it in March.

Any info would be greatly appreciated!

I hope you all have a lovely Christmas... X x
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12-24-2013, 06:21 AM   #2
rygon
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Try http://egap.evidence.nhs.uk/inflixim...-disease-ta187

It doesn't say that you need to stop after 12mnths, just to see if its working. After my 12month review it was decided that as I was feeling better than before, but not in remission, they would decrease the period of infusions from 8 weeks to 6 weeks. This has improved my condition loads and I feel like I'm in remission now.
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12-24-2013, 07:34 AM   #3
Lisa
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I get a yearly review here in the US, in fact I think I just had a phone call message saying that I was approved for another year, but as the name of the drug want said I'm not one hundred percent site which one it was for.....there has been no talk of me stopping it either just because I'm in remission.
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12-24-2013, 07:39 AM   #4
JustAYoungLad
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Yeah I think for the finance they need to review it yearly. But if there is a need it will be continued. I was on Humira for nearly 2 years with no problems.
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12-24-2013, 08:47 AM   #5
xX_LittleMissValentine_Xx
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Thanks for the link rygon

This is what worries me:

"Treatment with infliximab or adalimumab (see 1.1 and 1.3) should only be continued if there is clear evidence of ongoing active disease as determined by clinical symptoms, biological markers and investigation, including endoscopy if necessary. Specialists should discuss the risks and benefits of continued treatment with patients and consider a trial withdrawal from treatment for all patients who are in stable clinical remission. People who continue treatment with infliximab or adalimumab should have their disease reassessed at least every 12 months to determine whether ongoing treatment is still clinically appropriate. People whose disease relapses after treatment is stopped should have the option to start treatment again. "

I am feeling really well on it, but I don't want to stop it!

I have heard that if you stop it you might build up the resistance to it and not be able to use it again, I really don't want to use up one of my options. I just want to stay on it as it is working.

I am hoping that as I have fistulas then I will be able to stay on it... I need to keep reading.
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