Is it possible to go back on Remicade?

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Regular Member

Date Joined Jul 2007
Total Posts : 493
   Posted 1/4/2009 10:05 PM (GMT -6)   
I stopped Remicade earlier this year as I kept having to increase my intervals and had one not so pleasant reaction. However, the deciding factor for me stopping was my plans to go abroad and have a more convenient option (Humira). However, I was still not able to go abroad as it took a while to get approved. I know I need to give it time but Humira doesn't seen to be doing much for me at all. I was in 100% remission on Remicade and could eat anything.

Do people ever go back on Remicade and have success?
20 y/o, diagnosed 6/2007. On Humira, no wheat or corn syrup, low sugar, low dairy.

Regular Member

Date Joined Feb 2004
Total Posts : 122
   Posted 1/4/2009 11:30 PM (GMT -6)   
Hi mkl11, I was on Remicade 3 years ago with great results but the hospital just stopped my infusions with no explanation (I now know it was the cost, and because I was feeling well, they just took me off it). Anyway I flared again this year and I'm back on the Remicade (after Humira failed to work for me). So far I've had 3 infusions and not seen any improvement so far. I'm really hoping it's going to kick in soon though because I feel like it's my only hope now before they try and make me have a colostomy again. I have my next infusion in 2 weeks. I've not had any reactions to it so far.

Good luck with whatever you decide to do.
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 Jul 2004
Total Posts : 422
   Posted 1/5/2009 1:31 PM (GMT -6)   
I have never been on Remicade but I've been told of Remicade, Humira & Embrel. My GI told me that if I ever took one of those drugs, I could NEVER get off of it. It would be a life-long commitment. I couldn't just take Remicade, feel better and then stop taking it. So I told him I'd have to feel like I was dying from my Crohn's before I went on any of those drugs.

So my question I guess on this subject is: have you guys been told going off Remicade (or one of those drugs) is OK to do? I know a girl who was "fired" by her doctor because she kept missing her Remicade infusions. She was doing MUCH better on the Remicade but she just got tired of going to the appointments and gave up. 3 months later she had a total colon removal and has a colostomy. She's only 24. It just makes me wonder if she'd kept on with the Remicade what would have happened and if that is why my GI told me those drugs were never to be started and then stopped?
Diagnosed in October, 2004 at age 32.
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills, Chromium Picolinate
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 1/5/2009 1:50 PM (GMT -6)   
Unfortunately, most of our drugs are a lifelong commitment, unless/until they stop working for us.  Or until some better treatment comes along.  Steroids are used short term, and so are antibiotics like flagyl and cipro.  But anything else is long term.  The reality is  we have a serious, chronic disease.  We don't have the luxury of getting "tired" of our meds.  We either treat the disease or suffer health consequences.  That's not to say that we should blindly accept whatever treatments our doctors suggest.  But stopping treatment without a doctor's supervision just because we don't feel like doing it any more seems like a foolish decision to me.

Regular Member

Date Joined Dec 2008
Total Posts : 38
   Posted 1/5/2009 2:54 PM (GMT -6)   
My GI told me it doesn't work as well if you come off of it and then go back on it. I was on it 3 years ago, and stopped taking it (I don't remember why - I think I missed and appt). Now he's talking about putting me back on it if this flare doesn't get under control soon, but he said it wouldn't work as well, so I'm hoping my flare ends soon and I won't have to start it again.
Rachael - 24 years old, diagnosed with CD in Dec. of 2004.

Currently on 40 mg of Prednisone, 2.4mg Lialda, and 100mg Azathioprine.

I thank God every day for an amazing support network of family, my boyfriend who has been there since the beginning, and my friends who never waver.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 1/5/2009 9:23 PM (GMT -6)   
The odds of having an adverse reaction or the drug not working increase dramatically after 16 weeks with no treatments/infusions. During the time without treatment the body can built antibodies to Remicade.

I took about 6 months off to try Humira since Remicade was only lasting 4 weeks before a return of symptoms. When I decided to go back to Remicade, my first infusion went fine. The second caused hives in my mouth and on my face... then it didn't work at all. But, that doesn't mean it happens to everyone... The odds are just higher that you will have a reaction or not get any benefit.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.  Dx Osteoporosis 10/08 waiting to start Forteo (pending approval)
--single mom to 11-yr-old girl

Regular Member

Date Joined Nov 2004
Total Posts : 52
   Posted 1/8/2009 11:04 PM (GMT -6)   
I had been on Remicade for 3 yrs when I found out I was pregnant - I had a treatment and the next week I found out I was pregnant - Dr stopped the Remicade but at 20 weeks I flared real bad - risked preterm labor so Dr started Remicade again for the rest of my pregnancy.  Then the Dr told me that he wanted me to try Humaria because it was easier on patients.  After 10 weeks of Humaria I flared again so I went back on Remicade - I have been back on it for over a yr and for me it is as if I never stopped - It is working out great for me!
Good Luck!
Diagnosed with CD in 2000.  Currently taking 150mg Azasan adn Remicade every 7 weeks. 
In 2004 suffered from Hypersensitivity to Prednisone and can no longer take it.
Hand surgery due to Prednisone use in 2005 
Diagnosed with Endometriosis in 1984; one surgery in 1998 followed by Lupron treatment for 6 months (was put in drug induced menopause)
Diagnosed with Fibromialgia in 2004

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