Posted by Joannebr12 on 25/4/2008, 11:00 pm

I started loosing too much weight and was in hospital till my appetite came back, on a course of steroids and Azathioprin, now that im being weaned off the steroids the BIG D has came back with a vengance, my Gastro Doc, has found a mass on my right side with my liver, kidney, gallbaladder and stomach stuck to each other, the surgeon says too dangerous for surgery , so if the Azathioprin doesnt work , he tells me, the next meds would be Infliximab, my question to you all who have been on this, did it help in any way, im not a person who is easily frightened of the side effects, but it would be a great help to me if you could tell me youre experiance of this medication. Thank You for taking the time to read this, Joanne. x

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Posted by sam on 26/4/2008, 12:06 pm, in reply to "Getting ahead of myself!"

Hi Joanne, I have been on Ifliximab for over a year now and touch wood have no side effects at all. Not sure that it is working for me, but on the other hand don't know if I would be 100 times worse if I didn't have it. Hope it works out ok for you. Sam x

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Posted by chip on 27/4/2008, 10:42 am, in reply to "Getting ahead of myself!"

worked well for me for a while. Depends how often they give it to you. some times you get it in three short bursts other times they do it long term but over a longer period of time i.e. every 8 weeks. NICE have recommended it for use on NHS so it's safety has been well documented, but of course some folk react badly to it. If there are no other options it's worth a try chip

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Posted by Abby on 28/4/2008, 3:41 pm, in reply to "Getting ahead of myself!"

I know what you mean about coming off the steriods starting the big D back up. I've taken Infliximab/Remicade for a couple of years now. It is rough a couple of days after a treatment (aches and fatigue mostly) but then I perk back up. I get it every 8 weeks. The week before my treatment, I can tell it's time because the trips to the loo get a lot more frequent! I also take Azathioprine twice daily. I still have bouts of diarrhea but it is better. The best part is the pain is a whole lot less and I haven't had to have surgery in 4 years. Good luck in whatever you decide, Joanne. Let us know how things go. Abby

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Posted by Kaye on 29/4/2008, 9:28 am, in reply to "Getting ahead of myself!"

Hi I had to be weaned off steroids as they wern't working for me, I then had my first Ifliximab infusion, I was then put on azathioprine but had a call yesterday from the consultant due to the fact that it has started effecting my pancreas so are no longer able to take them. So far so good with the Ifliximab, just had my 3rd dose, they do normally say and I do agree that you'll feel different after the 2nd dose ie number of time visiting the loo. The way they worked mine was at 0 weeks, 2 weeks and 6 weeks. You'll be ok, I've always relied on steroids but they dont work for me anymore.

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Posted by Joannebr1 on 12/5/2008, 11:40 pm, in reply to "Getting ahead of myself!"

Thanks for all youre replies, it is good to here youre experiences, on this medication, sorry ive not been able to come back quicker to youre replies, i Have not been good since coming off the steroids, the feeling sick an no appetite returned, lost 8lbs in a week, my gastro doc is on holiday, so his understudy put me on 20mg of steroids for 2 weeks, then start reducing again, i do feel in limbo land just now , its a case of one day at a time, i do have a fantastic Gastro doc and i know when i see him again he will pull out all the stops to do whats best for me. AWE THE BEST, joanne, x

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