I've been on Prednisone since I was diagnosed in December. My doctor started me on Remicade, and I had my second loading dose yesterday. Since I've been on prednisone for a long time he wanted me to taper off of it right away. I got down to 5mg and I have been having a horrible Time. I've been having bloody D up to 15 times a day again, and I lost 7 lbs in the two weeks between remicade without trying. I'm wondering if I should call the doctor and see if there's something I can do while I wait for the remicade to start working? He said he didn't want me on prednisone, but a month of being stuck in the house doesn't sound like fun!! Thanks for the help :thumleft:
Coming off pred, waiting for remicade to work?
- Thread starter McM17
- Start date
Help Support Crohn's Disease Forum:
nogutsnoglory
Moderator
- Joined
- Sep 23, 2009
- Messages
- 9,085
Sounds awful and it sounds like you need something till Remicade kicks in. How fast did you taper? Where is your disease located? Maybe your doctor would be more open to a drug like Entocort which has less systemic side effects.
He wanted me tapering really quickly. I went down 5mg every five days and then I was supposed to stay on 5mg for ten days. My crohn's is all through my colon and all they way out! I'm going to call and ask tomorrow! Thanks for the reply, entocort sounds like a good idea!!
nogutsnoglory
Moderator
- Joined
- Sep 23, 2009
- Messages
- 9,085
If its in the colon ask about Uceris, it's a newly approved drug (same as Entocort) but better if your colon is effected as opposed to small intestine.
I was put on Remicade as I was tapering off Pred, I was on 20mg when I had my loading dose.
I took it very slow to taper off and during that time I felt horrible and my symptoms came back and i was really struggling to get off 5mg. I called the GI and they bought my next infusion forward ( 6 weeks instead of 8 weeks), it worked well and I was able to taper off steroids completely..
I took it very slow to taper off and during that time I felt horrible and my symptoms came back and i was really struggling to get off 5mg. I called the GI and they bought my next infusion forward ( 6 weeks instead of 8 weeks), it worked well and I was able to taper off steroids completely..
I went through a quick taper when starting Remicade and felt like absolute hell (but frozen over!) for a month. Talk to your doctor. You are probably having the effects of steroid withdrawal on top of whatever underlying active disease is going on.
Thanks for responding! I ended up calling yesterday, and my doctor was out, but the other doctor there gave me more prednisone. I'm on 40mg for 3 days, then 30 for 3, and then 20, and then I go back and discuss the rest of the taper with my doctor to see what he'll have me do. So I'm hoping it helps! I took the 40mg yesterday, and the blood has stopped so hopefully it'll work!
That's still a really fast taper. Hope you have another follow-up appointment scheduled soon.
