Stopping Remi back to pills
Sun, February 07, 2010 8:26 AM
My 11 yo daughter was on Remicade for 14 months for severe Crohn's colitis. Despite a careful infusion protocol and scheduling, she has developed antibodies and can no longer safely take it. The effects are only lasting about 30 days anyway. At post 8 weeks infusion, the Remicade levels were unmeasurable but the antibody levels were >11ug. (there is a high drug reaction likelihood for levels greater than 8ug). Decreasing the frequency between infusions won't help. She had her last infusion on Jan. 29th. Sadly, it worked like a miracle drug in the beginning.
The other Biologics are all by injection every 2 weeks. I think this would be too burdensome for someone so young to take shots. We agreed to try oral meds. Her Dr. wants to try a course of Azothiaprine starting Monday. Has anyone had sucess with oral therapy after stopping Remicade? She does not want to go back on steroids.
Joined Jul 4, 2008
Tue, March 23, 2010 10:25 AM
Reply posted for IBDaMom.
Has she ever tried enteral feeding as treatment...way more holistic. See book Beat Crohn's Remission with Enteral Nutrition
Joined Jan 25, 2010
Thu, February 18, 2010 6:55 PM
Reply posted for IBDaMom.
We just recently discovered that after 12 months of Remicaid our son is in a flare up and may have to go to the every 2 weeks shoots of Humira. He just finished a small (zpak) type of steroids which seemed to help a little, but from what I understand there is a possibility that their bodies can build up a resistance to the Humira just like the remicaid. Our problem is that the pills didn't work in the first place. I want a cure!
jobethgreeneJoined Feb 18, 2010
Mon, February 08, 2010 7:36 PM
Reply posted for IBDaMom.
Thank you, Mom's, for your responses. Today she is starting Azothiaprine and Allopurinol. I'm keeping my fingers crossed.
Joined Jul 4, 2008
Sun, February 07, 2010 2:15 PM
Reply posted for IBDaMom.
My daughter is 13 and has just started Humira injections this January. The exact same issues with Remicade developed with her - she was on Remicade for < 12 months because she developed antibodies and was having infusion reactions even with pre-meds including IV steriods.
I can say that the shots are not easy. They do hurt while they are being injected. We pre-ice the injection site and that does help some. However, the pain is gone very quickly after the injection is done. She is feeling well and is dealing well with having injections. She is just a normal teenage girl. For us, the idea of doing the shots was much worse than actually doing it - if that makes any sense : )
Hope this helps.
Ali's Mom
alismomJoined Feb 7, 2010
Sun, February 07, 2010 10:06 AM
Reply posted for IBDaMom.
Ughh, I am sorry the Remicade isn't working any longer. I know how frustrating this disease can be. My daughter is 10 and has been sick from day 1....only took 4 yrs to figure out it was CD. We don't have any experience with Remicade, so I can't offer any advice going from that to oral meds. I can't blame her for not wanting to go back on the steroids. They are wicked! You said the other Bio drugs that she would be elegible for were by injection every 2 wks, does her doctor feel it may be a good match for her? I may be more inclined to find more out about it, if it meant no other meds and no pred. I hear your logic with her age and having injections, but she may be able to gain a lot of living back. Both of my daughters have friends who are diabetics....they need to take 2-3 injections every day.....both are lovely, well adjusted kids and you would never know they were ill.
This probably doesn't help, just thought I'd send you my best.
Lizzies Mom
Joined Sep 9, 2009
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