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Remicade question

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Crohn's Disease
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Posted 6/28/2010 3:02 PM (GMT 0)
My funding for Remicade has been approved and I am having my first infusion next week.  Question is how will I know if it is working.  Sounds daft thing to say but I am currently down to 15mg of Pred and things are ticking over fairly well (one or two bad loo days a week instead of every day) so will I taper off the Pred when the infusions are finished or does this happen between infusions.  GI on holiday so can't ask him.  Whats everyone else's experience please. 

*Gave your post a title so you could get more responses*

Post Edited By Moderator (Nanners) : 6/28/2010 10:22:43 AM (GMT-6)

Posted 6/28/2010 7:54 PM (GMT 0)
I knew it was working due to a lack of symptoms, pain not being as bad and being abel to start eating again.  Depending on what symptoms/problems you started with, your doctor will probably judge it's effectiveness based on a lack of previous symptoms or based on tests that come back with better results.  I would assume that the goal is to wean you off of the prednisone once the Remicade starts working, but you'll have to ask your GI what his plans are there.  I know my drs have had a goal of weaning me off every time we've tried a new drug, just hasn't happened yet.     
Posted 6/29/2010 6:53 PM (GMT 0)
hi, just joined... and i just had my first Remicade infusion last Tuesday. Like you i did notice a difference on the prednisone, so of course i was waiting for the shoe to drop... i didnt notice anything right away. but today, a week later, i feel great! yay! symptoms are even less than only on the steroids. so i hope your first infusion goes well for you too!
Posted 6/29/2010 8:12 PM (GMT 0)
I had my first Remicade IV the end of Nov '09.  I feel great.  My energy is back and I have an appetite and can eat ANYTHING I want with NO issues.  I went from 10-20 bathroom trips a day to 1-2, usually 1 though.  It has truly been salvation for me.  The hard part is not putting on any weight  :)  Last year I thought only the Predinose would make me feel better, but this has it beat.  I wish you the best!

Posted 6/29/2010 8:14 PM (GMT 0)
by the way... I felt better within a day or two of the IV.
Posted 6/30/2010 12:53 AM (GMT 0)
I just got home from my 1st rem infusion, really tired and feel rundown, is that pretty normal? very headachie and a little nausea, next one is 2 weeks, then 6 weeks. is this a normal type reaction?

Posted 6/30/2010 1:06 AM (GMT 0)
Hey Artist Guy, I've only had two infusions so far and I too have a headace for a few days afterwards. Slowly goes away though. One thing I noticed is that I have the opposite problem the day of my infusion. I get insomnia. Last Monday after I had the infusion, I was up all night long and then hit the road at 5am for a 12 hour drive for vacation and I never got tired. A fellow crohnie told me it was probably from the shot of steroids I get before my infusion.
Posted 7/4/2010 6:00 PM (GMT 0)
Thanks for the comments everyone I will have to see what happens. At the moment I am being careful with my diet so it will be interesting if I can get back to eating more salad and veg once I start the treatment. I am very wary of tapering the Pred cos it hasn't been a good experience all the other times I have tried, as I said at the moment things are reasonable, anyway we shall see (not long now).
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