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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Infliximab - Remicade in England


02-07-2014, 01:30 AM   #1
AJC - Australia
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Infliximab - Remicade in England

Is anyone here from England?
I currently live in Australia and want to relocate to England.
Largest obstacle is REMICADE infusions.
I have them every 8 weeks and have done for 6 years….the drug is wonderful and has made me well again!
I am asking, how long can you take Remicade for in the UK? Some sites say you have to cease it after 12 months…..other people say 'no that isnt true'.
I need to go there knowing 100% that I can get the drug via the NHS.

thoughts??
English people??
I hope you are well today….
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diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

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02-07-2014, 02:09 AM   #2
Aphrodite_x
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Hey

I'm in Scotland, and am due to start Infliximab shortly.

I wont be much help to you, I'm afraid, as i don't have my next GI app to discuss it until 25th Feb. Something the surgeon said makes me think we need specialist funding. But i have been told that if i get it, i will be on it longer than a year due to rectovaginal fistulas.

I'll come back and let u know how easy/hard its been to get after my next app. But someone will prob be along soon with some better advice.

Hope you manage to get your move what a brave decision!
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02-07-2014, 02:24 AM   #3
snowiezip
 
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Hi 😀

I am also in Scotland, I have been told by GI that the target is 12 months for these infusions and at that point they do a colonoscopy - if there's no active disease then the infusions stop (likely until I'm flaring again and they have no other option to restart these). I'm sorry it prob wasn't what you wanted to hear. Bear in mind that perhaps your hospital may do things differently. If you know roughly which part of the country you're likely to be relocating to you could always post that as I'm sure someone help will be able to help for sure or even email the hospital direct for their procedures.

Either way good luck 😀
02-07-2014, 03:43 AM   #4
Absentminded
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I'm in England, and used to have Infliximab. I was on it for two years, but it does get reviewed after 1 year and if there is no active inflammation it is stopped. Here's a link to the NICE guidelines - http://guidance.nice.org.uk/TA187

In my case my IBD nurse was able to show that my inflammatory markers were slightly raised and I was still having symptoms so I was allowed to continue. I also had infusions every four weeks for about 10 months until it eventually stopped working.


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Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
02-07-2014, 05:41 PM   #5
AJC - Australia
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hey lucinda, how are you going now? Med free? Thanks for your messages people and I hope you are well today.
02-07-2014, 05:50 PM   #6
Absentminded
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Hi :-)

I have been med free since my first surgery in Nov 2012. I have had a flare for a couple of months, although haven't had any meds for it as I had surgery in January and my specialists didn't want to suppress my immune system before it. I'm seeing my gastro next month and think he'll probably recommend I go back on something, I'm not sure what though.


02-08-2014, 02:58 AM   #7
AJC - Australia
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good luck lucinda!
I had my first surgery in 1994 and had a similar pattern to you….then they put me on entocort. . . then infliximab.
02-08-2014, 06:11 AM   #8
Absentminded
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Ah thanks :-)
Good luck with your relocation to the UK!


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