I am waiting to start on Infliximab and am currently taking Pred and Methotrexate.  Will I have to taper off Pred before starting infusions or will that happen after ?  At the moment the Pred is keeping things fairly well under control but I don't want to be on this much longer (been on it 7 months so far) fed up with weight gain and sugar cravings.

Hi Linney,

I have been on Infliximab for just over 3 years now it works well if it works for you and you have no side effects!  I believe that they will continue to taper down your pred whilst starting you on the infliximab, this is due to you cannot just stop steriods especially after being on them so long also they can stop you getting any reactions from the infliximab as this could happen especially initially, rashes etc.  Once you have stopped the pred you are given hydrocortisone into the cannula before the infusion to stop this.  I have only been on pred once since starting the infliximab.

Hope this helps
Any other questions just ask,

Gayle
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Thanks, as with all drugs everyone reacts differently but its good to hear from someone thats benefiting from it.   Do you know if it has any effect on strictures (as in healing the scarring )?  At the moment I am waiting to get funding agreed from the PCT and it seems to be taking forever so I haven't seem my consultant for a while.

I'm not sure I would assume it would help, I had surgery to remove my strictures but also had one stretched out so I suppose it does help.
I know a few people on infliximab and it seems to be working for them all, obviously it wont work forever for everyone.  Thats a shame that its taking so long I hope they get something sorted for you soon.
Take care
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did you have many strictures and did you have strictureplasty.  I have fairly extensive disese in the small bowel with strictures dotted about so resection isn't an option but strictureplasty has been suggested if Infiximab fails.  Was it open surgery and how long was recovery ?

I had both resection (2) and strcioplasty  (4) in the same operation, like you, mine is also dotted about in my small intestine, I was off work for about 8 weeks, whether recovery time is also reflected in your age, who knows and it was open surgery, although they went in first with keyhole, but they had warned me if it was a mess, then they weren't going to muck about, they were going to sort it all out.  I think the infliximab should stop the strictures recurring, but because it's basically scar tissue I don't think that it would help.  I also have a fistula which I'm told the infliximab may help heal.  My crohns came back very quickly after surgery which was very upsetting, but not everyone will be the same, you are supposed to get at least 5 to 15 years clear from the surgery, so I hope yours gets sorted

Cant really remember now how many strictures there were, but there was a few.  I had 1 metre removed from my small intestine from a few various parts and it was open surgery, to be honest I was so glad I went for it the relief from the pain of the narrowings was immediate.  I was off work after the surgery for about 3 months.
My crohn's also didnt settle after the surgery I began having loose stool all the time and felt rotten hence why they put me on infliximab.  Initially presented with vomitting and constipation due to the narrowings.
They say most medication should work if it works for you will last about 5 years, although some may get longer or shorter than this.
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Thanks for replies.  Have just heard that funding has been approved and I get my first infusion on 7th July which I am really pleased about.  Still concerned that the strictures I have could still cause problems with obstructions again but will talk to consultant about that next time I see him. One thing at a time !

Woo hoo at last, goodluck with it!
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Had first infusion yesterday and felt ok apart from very tired last night (slept well) and bit drained of energy today.  Had bad stomach cramps for last hour (not this bad in ages) and then spent at least 20 mins in loo (felt like I had taken bowel prep) and wanted to vomit with the pain.  Still feel uncomfortable but pain has subsided a bit. Also had a lot of gurgling on left side of stomach. Not sure if this is the infusion, an obstuction clearing through the narrowing or just flare.  Watch this space !