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Can I go back to Remicade?

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Crohn's Disease
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Posted 3/28/2009 3:49 PM (GMT 0)
I stopped Remicade infusions almost a year ago because the migraines were becoming too much to bear. However, besides some (relatively) mild symptoms, my Crohn's and Arthritis were under control. I've been using Humira since about May 2008 and haven't stopped flaring since November. I feel like my entire body is eaten up with inflammation. I can't concentrate and feel disconnected often. Either the inflammation makes every inch of my body sore, or it has the fibromyalgia flaring as well. I guess I have so many conditions, I can't tell what's what anymore. The only thing I can think of is that the Humira doesn't work for me. A steroid pack (Dexpak) didn't work.

For those of you who know a bit about the biologics, is it possible for me to return to Remicade after being off if it for this time?  If not, what is the next drug to try after Remicade and Humira?

thanks for any advice you can offer

Posted 3/28/2009 7:13 PM (GMT 0)
It is possible, I've heard of many people who go off it for a while and then go back on, it'd be worth getting tested for antibodies first though to make sure you haven't built up any over the time you've had off it though.
Posted 3/28/2009 7:13 PM (GMT 0)
It sounds like your having a pretty rough time there ShellySoreBelly. I don't see why one couldn't just TRY and see how remicade works again, since it somewhat worked for you before. And im not an expert on biologics, but I heard heard somewhere that discontinuing remicade can encourage formation of antibodies, though im not sure how strong of an effect this really is. However, you might be interested in looking up Cimzia, which is a newer kind of biologic that may still be offered in clinical trials.
Posted 3/28/2009 8:43 PM (GMT 0)
I've just gone back on Remicade after not taking it for 4-5 years. I'm on my 5th infusion, but it doesn't seem to be working yet, not sure if it's going to. It worked well for me the first time, but they took me off it (for cost reasons I think). I've not had any reactions to it (yet) and I wasn't tested for antibodies first, although I was warned that there was a high chance I might have a severe reaction to it. I took the risk because I was feeling lousy and I was being told I'd have to have a colostomy bag, so just wanted to try anything.

Good luck if you go back on it.
Posted 3/31/2009 6:09 PM (GMT 0)
I was off Remicade for 8 months and started up again because of a return of symptoms.  They needed to double my dose to have it be effective but I've been fairly under control ever since. 
Posted 4/1/2009 10:11 PM (GMT 0)
Thanks, everyone!  My doc isn't ready to go back to it yet. I'm doing 3 days of IV Therapy (solumedrol) to try to knock out the flare. I also admitted to the doc that I wasn't consistent with taking the Humira every 7 days. I just hate administering the shots and put them off. I go 10 - 14 days sometimes. Maybe this is my problem. 
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