Hi all, I have got the results of my MRI and the Crohns seems to be more wide spread than first thought and also scarring from previous flares causing strictures.  surgery not the best option at present so I am starting on Remicade soon (already on Pred, Methotrexate and Pentasa but not responding).  Would be grateful for everyones experiences (good and bad) so I know what to expect (or not as the case may be !) Thanks.

Not to scare you or anything but I think you should be aware that I was on this and after the first infusion and a couple of weeks later, I suffered the rarest side effect of epilepsy, so now I have Crohn's disease and Epilepsy.

Good luck X


http://diaryofacrohnskid.blogspot.com/

I'm jut starting back on it, I had 3 doses late last year, I have not noticed any side effects except perhaps for a face,neck and chest full of spots which the Consultants only thinks is related (I had them only for the last 4 weeks).  It is a scary drug and not everyone will react the same, unfortunately it's the devil or the deep blue sea.  I had another dose on Friday just gone and they put stome steriods and antihistimine in the mix and my spots cleared up.  I read a number of posts where side effects have been mentioned and most of those have cleared up after stopping the drug.

Stay positive about why you having the drug, as the alternative could mean continued damage to your intestines, stay aware of any new problems and get them checked out, as there is usually help for them.  I don't know if everyone has an IBD help desk?  But mine is good.

I'm keeping my fingers crossed for both of us and all the rest of folks in the same position.

Take care. and try not to worry.

Julie