HealingWell
Search Close Search
☰

Is it possible to go back on Remicade?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/5/2009 3:05 AM (GMT 0)
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?
Posted 1/5/2009 4:30 AM (GMT 0)
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.
Posted 1/5/2009 6:31 PM (GMT 0)
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?
Posted 1/5/2009 6:50 PM (GMT 0)
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.
Posted 1/5/2009 7:54 PM (GMT 0)
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.
Posted 1/6/2009 2:23 AM (GMT 0)
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.
Posted 1/9/2009 4:04 AM (GMT 0)
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!

Michelle

✚ New Topic ✚ Reply