How inhumane that anyone should have to get so ill.
I've had two lots of three infusions one set last year and one set just and it was fantastic. Felt so well, even started riding my bike again!!!! Was under impression that could have it every 8 weeks but no, I can't because of money money money have to wait until I get really ill again before I'm able to have another infusion.
Makes me so mad. Is disgusting.
NICE say they want to promote good health and prevent poor health but this is a joke that anyone should have to wait to get that ill when they know it works for me and having it to maintain my good health makes so much more sense.
I know so many people must be in the same boat as me but haven't been able to speak to anyone.
I have written to NICE and to my MP but have not heard a response as of yet and half expecting not too. It is so dis -hearting.

That's awful,I was on Infliximab in fusions every 8 weeks for over a year and I too responded really well to it. I was told though that you have too score a certain grade to qualify for it so in other words be pretty ill!

That's not good news, I am about to have my 2nd infusion, started feeling better after acouple of days, but not sure if things are slipping already.  No one has said anything about what happens after my first 3 treatments.  So at least I'm armed for when I next go to clinic in Jan.  Is infliximab the end of line or is there anything else to try after, does anyone know?

Quoted from Julie

That's not good news, I am about to have my 2nd infusion, started feeling better after acouple of days, but not sure if things are slipping already.  No one has said anything about what happens after my first 3 treatments.  So at least I'm armed for when I next go to clinic in Jan.  Is infliximab the end of line or is there anything else to try after, does anyone know?

There is other med's out there if Infliximab does not respond, theres Methotraxate,Thalidomide and Adalimumab. Im on Adalimumab at the minute, tried the others as well as Infliximab and it's not working for me. Its REALLY doing my head in!!
Hope that helps

Meilfisk,  I'm aleady on Methortraxate (had the does increased already), and Budesonide, couldn't tolerate the azathioprine, and I really think I'm slipping on the Infliximab, so thanks for letting me know there more out there, it's worrying when you think you are running out of options.  I was only diagnosed last year, and I've already had a preianal abscess with fistula (3 surgeries to clear it up), and surgery in March this year for 2 resections and 4 stricoplasty's, so it's not like surgery can help, although they have just rechecked and I have 'Recurrent pre-anastomotic abcess ulceration' not quite sure what tha means, but it's probably why my side hurts!!!!  Fed up is an understatement, tired, tearful and unfair, there I said it out loud now!

Hey Julie, how are getting on with the MTX? i hated it!! Am on the AZA because i couldn't tolerate the BUD, made me as sick as hell. Im a bit like you as well, had the surgeries and abscess's and also running out of options to what the next step is going to be. Ive had it for the last 10 years now and it has done nothing but make my life a complete nitemare!!

Meilfisk,  Tolerating both mtx and Bud well, due my next infliximab this Wed, not convinced at this point.  Just had a swineflu jab, and have to go back and have another one because of the flix.  Wasn't convinced whether it was a good idea or not, but the only people dying are the ones with 'underlying health conditions' so thought it was probably the best option.

I'd been going to the docs with pain and vomiting for years, not quite sure the indigestion rememdies actually helped though!!!!! lol

One doc mentioned hindsight, I was tempted to mention training................................