Can I go back to Remicade?

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Date Joined May 2005
Total Posts : 201
   Posted 3/28/2009 8:49 AM (GMT -7)   
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
Symptoms began in 1996 & Diagnosed April 2005 w/ Crohn's.
Fibromyalgia Syndrome & IBD-related Arthritis in August 2005.

31 yrs old & married to a supportive husband, 13 yr old stepson.[/color]

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 3/28/2009 12:13 PM (GMT -7)   
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.

Regular Member

Date Joined May 2006
Total Posts : 229
   Posted 3/28/2009 12:13 PM (GMT -7)   
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.

Regular Member

Date Joined Feb 2004
Total Posts : 122
   Posted 3/28/2009 1:43 PM (GMT -7)   
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.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.

Regular Member

Date Joined Jan 2008
Total Posts : 37
   Posted 3/31/2009 11:09 AM (GMT -7)   
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. 

Regular Member

Date Joined May 2005
Total Posts : 201
   Posted 4/1/2009 3:11 PM (GMT -7)   
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. 
Symptoms began in 1996 & Diagnosed April 2005 w/ Crohn's.
Fibromyalgia, Arthritis in August 2005.
34 yrs old - Methotrexate, Humira, Toprol, Prevacid, Methadone, Zanaflex

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