Weaning off Prednisone - How have you weaned?

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Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 7/26/2008 11:12 PM (GMT -7)   
I know I've posted some posts lately about the dreaded PRED. Some of you mentioned weaning slower, such as 5mg/week rather then 10mg/week.

How has everyone else weaned? I've had some interesting side effects in the last few days. I think it's mere frustration from being on the drug itself, but I'm noticing more blood again and I can't pinpoint if it's the fissure or the skin tag or internal. My disease is primarily in the sigmoid and rectally and therefore it's hard to truly decipher "where" I'm bleeding from at times. I've been taking pain pills on an average of one every 36 hours (Loratabs 7.5/500). I usually take nothing more then Norco. I've noticed my bowel habits increasing instead of staying steady. I'm going more of 4-5x per day versus the 1x per day I was going when I was discharged from the hospital.

I'm worried we may be weaning too fast off the steroid. I have several steroid s/e's and always have and because of the eye issues, they do not like me on them for prolonged periods of time. In fact, I have to get a call into the opthamologist to get my pressures checked because hte last time, I developed slight cataracts in both eyes and I've had a prior retinal detachment. Steroids are the last resort for me in all treatments because of the continued s/e troubles I have.

Anyway, the reason for the steroids was because they just bumped my Remicade to 10mg/kg. I was told it could really take up to 6 infusions to get the full effect of the drug. I was also told it could work for 2 months or 2 years or who knows. They are using the steroids to bridge the gap in between the Remicade working and this flare settling. I'm quite worried my days on Remicade are becoming limited, but we obviously need to give it another 1-2 infusions before we just give up because it HAS been my miracle drug. And, because I flared so badly, we DO need to ensure that I'm covered with the steroids until the Remicade has a chance to rebuild in my system.

Anyway, that was a very longwinded way of asking, how would you wean? I have to get scheduled to follow-up with the GI. I've been terribly weak and although the GI told me to just take this week (last week) off from work after my 8 day hospital stay, I physically cannot do a full work day. I think I'm still going to need another 1-2 weeks to really even regain my strength to get back to my job, even though it's a desk job. I'm supposed to wean down again tomorrow and they were doing it by 10mg, but I'm thinking about just weaning from 30mg to 25mg tomorrow and hopefully getting into the GI this week for my follow-up and then see what he says.

Any suggestions?
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 7/27/2008 7:12 AM (GMT -7)   
Everyone is different so everyone will probably tell you something different. It just depends on how your body is responding to the tapering.
My GI has me going off it 5mg a week and now that my Methotrexate has kicked in and working some I hopefully won't have any problems keeping
it to 5mg a week. He said when I get down to 10mg and have trouble we may have to slow it a little more like by 2.5mg. And if not then when I get
down to 5mg a week the following week he said to do 5mg every other day and then I should be able to stop. So that's how I'm going right now.
I know 8 years ago when I was on it I had started much higher (80mg) and was on this stuff almost a year so it was super hard for me to get off
it and I had to basically go 1mg a week. It was horrible.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
No Surgeries

Regular Member

Date Joined Jan 2006
Total Posts : 449
   Posted 7/27/2008 7:55 AM (GMT -7)   
Thanks LBJ. I know opinions will differ. I think I'm going to stay at the 30mg dose today and call the GI first thing in the morning. I just don't htink the Remicade has kicked in and taken enough effect to wean so quickly. It's better, and maybe that's all they want to hear is that the Remicade is working SOME . I'm in between GIs though. I had just switched to a larger, more up on the news GI, then go taken by ambulance to the hospital and another GI picked up my care and wants to follow up, but then he went on vacation and another GI d/c me from the hospital. It's quite confusing and I keep getting conflicting info from all of them. I'm noticing more and more about the different "theories" they hold. Though, the GI that admitted me, I really did like him and he's very up on the new stuff....even mentioned we could give it a try if the Remicade wasn't going to workout. I'm just to scared to say goodbye to Remicade...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 7/27/2008 9:50 AM (GMT -7)   
I always have weaned down by 5 mg per week. I think LBJ has a good idea when you get to 10 mg go down 2.5 mg per week until your done.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 7/27/2008 10:56 AM (GMT -7)   
I went down 5 mg per week, then now for the last 10 mg my doctor has me going down slower. Basically I'm going down 1 mg every 3-5 days (got this whole elaborate schedule he gave me). I had trouble with the last 10 mg, and was having major headaches, nausea, no appetite, fatigue when I was trying to go down too fast during the last 10 mg. Everyone is different with that though, some can go down faster then others. But I think slow is best for sure, after my experience. I'm down to 7 mg today!
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 7/27/2008 1:22 PM (GMT -7)   
I've gone by 5mg until I get to about 15 and then by 2.5 until 7.5 and then I start going by 1. BUT, I've been on pred for most of the last 15 years now. I've been able to get off for brief periods of time, but usually I end up back up around 20 which seemed to be a consistent dose for me. Since I started taking Xifaxan 2 years ago I have been able to decrease very slowly, and I mean very slowly, so that I am down to 4mg now. I make a switch only every 6 to 8 weeks. I have had to do a few short bursts for my joint pains, but this is the lowest I have been in a long time. I will take any dose lower than 10 that I can maintain for any length of time. My hard won advice is take it much slower than you ever imagined possible. In the grand scheme of things, what is one extra week at each dose worth rather than risking a flare and having to start all over?

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 7/27/2008 1:48 PM (GMT -7)   
I have always tapered down by 5mg each week.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 7/27/2008 2:50 PM (GMT -7)   
I've only been on pred once-for eight months. I did 30mgs for forty two days then 20mgs for three days 10 mgs for 4 days then 5 for months then a failed attempt to go to 2.5 so back to 5 then 2.5 for two weeks then stop. The failed attempt was because my maintence med had not kicked in.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 7/27/2008 3:06 PM (GMT -7)   
Hi I lowered 5mg's at a time until the last 10 then 2.5 at a time and stayed on 5 for a week or two under 10 I went very slow. Of course you have eye issues here to deal with so maybe someone else who had those kind of issues will jump in here. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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