Trouble getting off of Pred. Entocort?

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Regular Member

Date Joined Aug 2007
Total Posts : 44
   Posted 3/14/2009 4:32 PM (GMT -7)   
Hi everyone. I've been lurking here occasionally for a while and posted once or twice a couple of years ago when I first got diagnosed, so I figured I'd see if anyone has any advice or experiences they could share with me.

I'm coming out of a pretty miserable flare, which started back in October. What finally got me under control was Prednisone (in combo w/ Lialda and rectal meds). I started at 40 mg/ day in december, tapering by 5mg every two week. After a month or so things started to get back to normal, and I got down to 20 mg and was feeling great. At 15mg I started to have a tiny bit of trouble (rumbling noises, occasional cramping or diarrhea, etc). I was still feeling pretty good so I figured I'd keep tapering, since I am worried about the side effects of staying on the Pred for much longer. However, 2 weeks ago when I came down to 10mg things started to get real bad, real fast. Within a couple of days I was back to waking up in the middle of the night with intense pain like I hadn't had for months. I called my GI and she told me to go back up to 15mg for another 3 weeks and that we'd try tapering again even more slowly. That was like a week and a half ago and I have started to feel better, but I'm still having pain, cramping, and a lot of fatigue. I don't feel like my condition is very stable at all right now, and I'm almost positive that if I try to drop the dose of Pred in a week things won't go well at all. I have an appointment with my GI this thursday and I'm trying to come up with a new game plan (preferably one that does not involve immunosuppressants or biologic meds, which I'm hesitant about).

One idea I had was to add Entocort and then try tapering the Pred again. I don't know if this is a long-term solution (seems there are mixed opinions about Entocort as a maintainence med), but I do feel like it could buy me some time since I'd be getting off of the systemic steroids. I haven't talked to my GI about this yet, but when she put me back on 15, she said I may just need a little more time for my intestines to heal (since the inflammation was pretty out of control at its worst, especially with the bad case of C. diff I got right in the middle of the flare), so maybe 8 weeks or so of Entocort could do the trick?

Has anyone gone from Pred to Entocort? If so, how did it work out for you, what dosages were you on, and what did your Pred taper look like?

And for anyone else whose had trouble tapering off the Pred (which I gather is a fairly common problem), how have you dealt with it?
This drug sure is frustrating! Talk about a love/hate relationship...

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 3/14/2009 7:02 PM (GMT -7)   
I know this is not what you want to hear but a lot of times in order to get down to low doses of pred and then get off of it you have to add another med. Prednisone will not always induce a lasting remission so the biologics or if you don't want to go there perhaps methotrexate or something else may be neccessary.

Regular Member

Date Joined May 2005
Total Posts : 92
   Posted 3/15/2009 12:35 AM (GMT -7)   
Never took Pred so cant help you there, but I was on Entocort for quite sometime when I was first diagnosed and the mesalamine would not help. Entocort worked great for me, the only problem is these steroids are not long term solutions. While they may solve the problem from a few months, you cannot take these pills regularly for a long period of time because of the side effects. If I were you I would start thinking about alternate options like Remicade, or surgery.

You remind me of myself because I too was hesitant and did not want to switch to those dangerous immunosuppresent drugs. Unfortunately I could not go on living life the way I was constantly in pain. My doctor told me I had to decide on Remicade or surgery. After a long deliberation, I decided on Remicade since surgery would only last 4-7 years before the Crohns would return. What would be the point of that?

I know those drugs have risks involved with them, but so does walking outside your door every morning. I couldn't live my life in constant pain and agony, and I'm sure you feel the same way. I am on Remicade now and things could not be better. Its almost as if I dont have the disease anymore. If I were you I would consider Humira or Remicade to get your situation under control. You will be glad you did.

Forum Moderator

Date Joined Feb 2003
Total Posts : 15289
   Posted 3/15/2009 5:39 AM (GMT -7)   
think Sinus summed it about as good as anyone can. Now, I have been on Entocort since maybe 06. I just know its been a long time. The starting dose with it is 9mg.I take 3mg 3 at a time every morning. I tried getting off the Entocort and was not able to. So, my dr says I will just have to stay on it. I have not had any issues either being on it so long. I am also on Lialda and Humira. You may have to change the way you are thinking on Remicade or Humira if you are wanting to get past some of this and not be dependant on Prednisone. I was on Remicade a very long time before it lost its effectiveness. Both made a big difference in my life. Much better quality of life and thats the name of the game to begin. Good luck, Susie

Regular Member

Date Joined Jul 2003
Total Posts : 145
   Posted 3/15/2009 10:37 AM (GMT -7)   
Coming of pred is very difficult. I am on 5 mg pred and 6 mg Entocort, I am trying to drop to 2. 5mg pred and 9 mg Entocort, but nearly impossible. I used to be on 6 mg Entocort and 2.5 mg Pred. But that was then. So, I am in no position to give you advice. I am going to stay of biologics and surgery as long as possible.

Regular Member

Date Joined Aug 2007
Total Posts : 44
   Posted 3/16/2009 12:36 PM (GMT -7)   
Thanks for all the feedback, guys. I'm not ruling out biologics, but I do see them as sort of a last resort (along with surgery, which my GI hasn't even brought up) and I feel like there are a few more things I'd like to try first Maybe I'll have to go there in a few months, or maybe even a few weeks, but my Crohn's in the past has been on the mild-moderate spectrum and I do think there's a chance I may be able to get things under control without doing so. We'll see what my GI says when I see her this week. This whole thing has also been much complicated by a recurring case of c. diff. It makes it hard to tell what's from the Crohn's or what could actually be re-infection or lingering inflammation or symptoms from that.

Iram, I'm sorry you're having such a hard time with the Pred too. How long have you been on it for? When did you add the Entocort?

Regular Member

Date Joined Jul 2003
Total Posts : 145
   Posted 3/16/2009 1:55 PM (GMT -7)   
As of today things have gotten bad. I was feeling great yesterday. Spent the evening with my kid in the park. Today CD is flaring badly, hope I don't end up in hospital. I waiting for my GI to respond to my phone call. Accordingly I have to deal with this. It seems remicade time is here. I have been putting if off for the long time.

Update: Okay I am heading to the emergency...see you all tomorrow (hopefully) or in a few days.

Cheers, bye

Regular Member

Date Joined Jan 2009
Total Posts : 394
   Posted 3/17/2009 9:51 PM (GMT -7)   
My daughter's doctor wanted us to start 6MP when she was tapering off of the Pred --- thankfully we didn't need to because she was able to get off Pred without problems.
Sorry...I guess I am not much help!
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 3/17/2009 10:52 PM (GMT -7)   
Yes, my daughter used Entocort to get off Pred. The schedule:
at 20 mg pred, she added one pill Entocort
a week later, at 15 mg pred, she added two pills Entocort
then went down by 5 mg weekly on pred while still on two pills Entocort
on the day she went down to zero pred, she went up to three pills Entocort
Daughter (21) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress but landed in hospital on 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill) since May 07, SCD multivit, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, daily 1000 mcg B12. B12 shots monthly. SCD diet modified to include potatoes and rice.   

Regular Member

Date Joined Feb 2009
Total Posts : 66
   Posted 3/18/2009 1:26 PM (GMT -7)   
Hi, I had the same problem as you seem to have, was on Prednisone and when doc tried to wean me of it, my problems came back at 7,5mg. She put me on Entocort 6mg/day and it has worked great for me for two years. Then I had to have a resection and was put back on Entocort and Pentasa shortly after as the illness was coming back right away.

Good luck, hope it will work for you as well !!!
Diagnosed with Crohn´s in 2005, 3 surgeries, currently 39 weeks pregnant with second child. Pentasa 2x2, Budenoflak 1x2, 30 yrs old

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