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Using remicade to taper off steroid

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Crohn's Disease
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Posted 6/18/2008 4:55 AM (GMT 0)
Hi everyone. since this site is really supportive and all I was wondering if i could throw out a few questions to people who have been through the same thing. I just had my first remicade infusion yesterday, and luckily I felt totally fine after having it. I wasn't even tired at all and had no headaches like some report. I even remember asking the nurse in a joking manner if they put anything in that saline bag at all lol. so far, symptomatically, I dont' feel much different at all. Not much improvement. Maybe I do find that I get alittle less bloated now but not too much of a difference. does remicade take awhile for some people to feel an effect? My GI doctor wants me to wean off entocort, which im taking 9mg daily now, and he said to try and start tapering after your first infusion of remicade. Is this plan actually practical? or does it just sound good on paper? I would almost say that I feel slightly more pain since I only took 6mg of entocort this morning. Any advice would be great :)
Posted 6/18/2008 5:01 AM (GMT 0)

Hi Camjames,

Remicade is my miracle drug. I have had three infusions and was able to wean totally off my steroids. I went into treatment (remi) not expecting to feel better. I actually didn't notice it for about a week. I had significantly less abdominal pain and less bloating. I didn't feel great, but I felt good. Then I had my second treatment and that helped with the joint pain. I had my third treatment and was feeling great. Unfortunately, my joint pain is back, but after three remi's I have minial stomach discomfort and I feeling better. I have other issues going on, so my depression has kicked up. Good luck with it. I feel that remicade is the drug that saved my life, mentally and physically.

Kgirlie

Posted 6/18/2008 5:32 AM (GMT 0)
I had noticable relief from my gut symptoms after my second infusion. One week after my 3rd infusion I had one formed stool every day or every other day, no bloating, pain or other problems. Clinical remission is sweet!

I think severity of intestnal involvement is one factor is a person's response. Another is just plain - everyone is different!

See how you adjust to the 6 mg of Entocort the next day or so. In fact, this might be a good time to start a symptom/response diary so you can see trends indicating Remicade's effects and ability to taper from Entocort.
Posted 6/18/2008 10:42 AM (GMT 0)
... and the doctors might want you off the steroids quickly because you've been on a high dose for a long time. That happened with me and Humira - they said that, under normal circumstances, they'd get someone established on the biologic before cutting the steroid dose, but they didn't have time to do that with me, so I just had to cut and bear the consequences.

Tough, but I can understand their concern, given some of the horror steroid stories that have been circulating on this forum lately.
Posted 6/18/2008 10:59 AM (GMT 0)
Hi, You should start feeling better after the 3rd infusion. i have been on remicade for almost 5 years now. It is a miracale drug.

teddybear
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