Hi ,I was lucky I got a shot at it for two years,but I have heard that they now review you with another MRI after twelve months,I did,nt think mine started working till at least the fourth or fifth infusion,so had to wait a little,the problem is it does not work if you have scar tissue which mine is,there was a little inflammation there which it did clear up hence the very slight improvement,so then they said that they could not justify to the pct whether I was gaining full benefits from it,which I don think I was,as I was still carted off to Heartlands with two partial blockages whilst I was on it.
As I mentioned am now on Aza and its ok but I think they are still keen on me having surgery as my stricture is about 5 cm,but they said it will be about 12 inches they remove in my Ileium.
Its ok keep having ops,but the problem still keeps coming back,and it's all the extra probs this crap disease brings with it. Do you have joint problems,?i was ok till about 10 years ago,the out of the blue my ankles swell up,un be knowing s to me this was the start of Seron Negative Polyarthralgia,within days I could not walk,had to have commode delivered,I could not even get out of bed my knees,feet,ankles,fingers,elbows,back of my knees all swollen up.it was horrendous.
Luckily when I went on the infliximab it seemed to calm it all down.
I think in the states US they seem to go infliximab for years,but unfortunatley in this country all they seem to do is give you a shot at it and that's it.
I spoke to a lady at heartlands who had it for 12 months and they took it off her then,she was back in outpatients cause her symptons had returned three months later.
I really think that if its working for people they should give them the option of staying on it for at least 5 years at least,even if it just gives us a rest from the dreaded illness.
By the way I started my crohns journey at the QE quite a few years ago,had two crohns ops there,I thought there care there was excellent,but tbh Heartlands is not to bad especially for this disease.
Look forward to your blogs