Re: has anyone restarted remicade after a year?
My son received Remicade for a year successfully without any problems, but he was then taken off of it as the doctors wanted "to save the big guns for later." He recently tried restarting Remicade again a few months ago after a two year lapse, and he had a delayed reaction--severe joint pain on day 10 that lasted about a day or two and the return of his CD symptoms. A few days later he had a very sore throat that lasted about a week and tested negative for strep, but we don't know if that was just viral or was related to the Remicade. He had been taken off of the 6mp before trying the Remicade again because of the increased risk for cancer with the Remicade/6mp combination. He was premedicated with Tylenol and Benadryl before the infusion and did well at that time so I thought that it was going to work for him. Until the day 10 reaction, he was feeling better after having received the Remicade. He is now taking Humira. It sound like some of the kids have done well restarting it. I hope your son does also! It's definitely not an easy decision. Stacy
(Son,CD,15,Humira,Pentasa)
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Re: has anyone restarted remicade after a year?
Yes, my daughter has been on and off Remicade since 2002. Her GI use to put her on a year and take her off until she' flare again. She went back on it in Dec. and he is keeping her own it indefinitely without breaking the cycle. She never had a problem when she would go back on the drug. Everyone is different, but I certainly hope your son has success!Good luck. Leigh
Emily 17, CD Remicade, Lialda
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Re: has anyone restarted remicade after a year?
yes...and sucessfully. Tom had remicade for the 3 loading doses beginning in December, 2005 and responded immediately. He was on only 6mp for about 15 months before flaring again. He started remicade again (did the 3 loading doses over again, plus every 8 weeks now) May, 2007 and has been in remission since (along with 6mp). He gets premedicated with tylenol and benedryl and has never had any reactions or side effects. Hope it works for your son too!
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Re: Re: has anyone restarted remicade after a year?
how old is your son? My son is 12 going on 13, is targeted area of inflammation is his terminal ilieum
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Re: Re: Re: has anyone restarted remicade after a year?
Tom is 13 and was diagnosed at age 10. His crohns is in his stomach (very large ulcerated area at the bottom of his stomach) and the colon...we assume it's in the small intestine too, although we haven't done a SBFT. Basically, his mouth and butt have been spared!  His first signs of illness were all lower abdominal e.g. cramping and bloody diarrhea...the most recent flare was more "upper" - nausea, vomiting, upper tummy pain. The upper endoscopy showed more severe areas of disease than his colonoscopy last year. I see above that your son might be having surgery...I'm sorry it's at that stage and wish you all the best.
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Re: has anyone restarted remicade after a year?
my son was on remicade for 18 months when he was in kindergarten. it did not help. he ended up having surgery etc.. we did not start it again until about a year ago (he was 8) and it was helping marvelously after the first dose. he had a MAJOR allergic reaction to it 30 seconds into the second infusion....so no more remicade. the good news in that story is that the drug would've been really effective, i think, had he not developed the antibodies.
he is on humira right now and in a good holding pattern thus far.
kmap
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Re: has anyone restarted remicade after a year?
Yes. My son was off remicade for 18 months when he went back on. Before each infusion they give him steroids and benadryl. He's never had a reaction but the Remicade hasn't been nearly as effective this time. They've shortened the time inbetween to only 5 weeks but it's still not great. They scoped him 2 weeks ago and he's quite inflammed so all in all, it's not really working. Is that because of the time off? Couldn't say. Good luck. Mary (son 17 dx CD at age 10)
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Re: Re: has anyone restarted remicade after a year?
why did they give him steroids before the infusion....were they pill form or intervenously?
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Re: has anyone restarted remicade after a year?
If your child has been off Remicade for a year, the amount of antigens increased in his body and there is a higher risk of having a reaction to Remicade on the second round. Physicians now prefer to give patients 6MP prior to the second round of Remicade in order to suppress the immune system and reduce these antigens. That way, when you go for the second round of Remicade the antigens are not nearly as many and the reaction won't be occur. You may want to research this online further. This is the information given at one of those IBD education days by several physicians. Keep in mind, in order for 6MP to become effective, you have to be on it for several months. So the timing of Remicade needs to work with the time it takes for 6MP to work. I hope this helps a bit. Varda [29 years with Crohn's; Diagnosed at 10]
PS I went back on it myself after six months, but that only supported my suspicion that it worsens my strictures, so I didn't continue on it.
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Re: has anyone restarted remicade after a year?
We did it after 17 weeks and then had some delayed hypersensity/skin issues ever since. No reactions at infusion time and it's working well.
The new clinic where M gets her infusions puts patients back on after 1-2 years with success. The nurse told me they have all kinds of tricks they use for doing this. They only had 1 patient have trouble after being off 2 years. He got hives the size of quarters on his skin, but they just slowed infusion, gave him some steroid and this didn't happen ever again (even at successive infusions). I can email you our doctor's info if your doctor wants to talk to him about how they do this. This supervising doctor (not our peds GI, rather the one who supervises her infusion because he's an adult GI) graduated from Harvard medical school and has had patients on Remicade for 10 years. Very bright. He's also alot more cautious with Remicade than the average GI. Christine
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Re: Re: has anyone restarted remicade after a year?
yes, he has been on 6mp for over 2 years
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