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Need advice on my Infliximab

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Crohn's Disease
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Posted 9/25/2009 8:57 PM (GMT 0)
Have Had 3 doses of Imfliximab and the first two apart from weird side effects, but no one had seen me so well for 13 years, MIRACLE !, but after the third one nothing in fact I feel I am going backwards... really fed up back on the loo, tired again etc etc. I am going back to chat with them this week. However I rely on the experts which are everyone on this board. Has any one experienced this and is it just a blip. I am on 8 weeks dose now so will not have next infusion til end of October. Any ideas cos I so want this to work like it did, can't go through any more operations.
Posted 9/25/2009 8:59 PM (GMT 0)
It isn't a cure, it's more of a way to make your life better. At least a few times per month I feel crappy, but the other days I feel better than I have in years. You still need to realize that what you eat will still cause symptoms, even on Remicade.
Posted 9/25/2009 9:26 PM (GMT 0)
That is exactly what happened to me. I started it and MIRACLE!!!! then back to crappy so they increased the amount of mg/kg. felt alittle better, then got worse again, so another increase, until they couldn't increase anymore. SO then they thought maybe I should get it every 6 weeks and then it turned into every Month and with each change I felt awesome but only for a small amount of time. 2 years later I just had a colonoscopy and Crohns is enlarged and incharged. So remicade did not work for me and now I have to choose between Cimzia and Humira. They don't have a reason for why it did not work for me, I do not have the antibodies for it. But maybe you have developed them or maybe your in my same position. And I do know it truely sucks.
Posted 9/25/2009 9:48 PM (GMT 0)
Thankyou so much for getting back to me so quick, I have had a crap day, even starting crying at the dentists.....Sad I know I didn't even manage that as a child. I tried to tell myself I was not sick for the last few weeks, just in case it suddenly kicked in. I don't know can hey change any dosage yet cos I have already had it slowed down ( the Infusion ) and I am still completley manic for 2 weeks and almost burn myself out with the manic energy and then I crash and burn into tears for a few days.... Yes it is hell but those weeks of feeling fab were the up side and showed me I have been so ill since the last round of 5 operations 11 years ago. Was thinking I could do with a colonoscopy. Does Cimiza and Humira take longer to work ?
Posted 9/25/2009 9:55 PM (GMT 0)
I felt so good after my first infusion. but then i got worse and back to the same i was before.

but after 5 infusions I finally started to get much better.
So lets hope thats happens to you too ;)
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