Weaning off Prednisone - How have you weaned?

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?

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...

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!

I have always tapered down by 5mg each week.

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