Posted by David - UK on 2/5/2008, 9:46 am

I had my first flair up in 11 years last April, ended up in hospital for couple weeks and came home with bag of antibiotics and steroids. Then had little flair ups in September and November and again hospital, CT Scan, drugs. Then I went for my check up CT on Christmas Eve and was in hospital on 27th for 2 weeks as they found that my small bowel was stopping the tube from the kidney working so had a stent put in. Again bag of drugs and off home. Two weeks later was back in, but this time my consultant of 11 years was on holiday so got to see the top dog consultant. We agreed that surgery was only option (see other posts as I get use to Stoma World!!) So I went home at end of Jan with surgery planned for end of March. This time however rather than bag of drugs they gave me Infliximab Infusions which lasted 2 hours via IV. Had one while in hospital and 2 more planned upto operation. Made the 2nd infusion but during scan (my 9th CT in a year, must be a record?!) they found a load of lumps and bumps - including an absys working its way through my pelvis (yuk) and a very big mass attached to intestine and blood vessels. Had biops and luckily wasnt cancerous but they brought forward my operation to next day and had all done in one 8.5 hour hit in theatre. So I never got my 3rd infusion - but has anyone else had infliximab? I found it the most fantastic treatment to my crohns. For 3 weeks I felt brilliant and last week prior to next one (and final one as it transpired) I began to revert back to type. Speaking to a few friends with crohns, 1 in London and 1 in Newcastle they have asked and been told not available. As a deputy director of a NHS Trust I'm interested to know if there is post code lottery on infliximab (its £2000 per infusion) and if anyone else has had how did they find it?

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Posted by gemz on 2/5/2008, 11:48 am, in reply to "Infliximab"

Hiyi I had infliximab twice...along with methatrexate injections for 10 months...unfortunatly my crohns was too advanced i didn't get it again and eventually had a stoma formed. Its readily available at my hospital in aberdeen and theres loads of peeps on it and other on Humeria (given to peeps when infliximab stops working)... Gemz x

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Posted by Neil on 4/5/2008, 3:23 pm, in reply to "Infliximab"

Jo was given Inflix some 5 years ago and it was a wonderful cure for about 4 to 5 months, then the hospital would not give it again due to the cost. She then had a full illiostomy and has done brilliantly till about 67 months ago when the crohns flared badly. We since had moved to Scotland where Infliximab is readily available and she was put on it straight away. Unfortunately they have discovered that a high dose of Steroid prior to infiliximab stops any problems. Jo did not have that the first time and durting her second treatment had a severe anaphalectic recation (spelling) preventing her from having Infliximab again. Brilliant drug and thank you Scotland for having it so readily available unlike in England.

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Posted by chip on 5/5/2008, 11:36 pm, in reply to "Infliximab"

see NICE regualtons on infliximab. post op won't be a priority as should be free of crohns else surgery waste of time. Surgery only used as last resort and stoma bag should keep you crohns free for at least a while, as only given to relieve use of colon so once colon not in use due to ileostomy bag no need for infliximab. infliximab ONLY given to peeps with severe crohns not treatable with meds, so if treated with surgery no need for infliximab, nothing to do with postcode lottery. Hopefully now you should be meds free. chip

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