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Posted 11/22/2009 12:19 PM (GMT 0)
I'm on a taper that drops every two weeks, 40 to 20 was easy, at 20 to 10, I'm depressed (understandable) but I'm starting to get small amounts of persistent diarrhea, no full bowel movement, no blood, no mucus. I want to stay the course. I'm on psyllium husk powder which firmed up the stool at the end of he 20 and the first week of 10. Should I stay the course? I will, of course, call me GI, I've been on prednisone for 7 weeks. Failed the first quick taper probably because I freaked out. I was frightened.... GI disagreed with me, but I got myself back up to 40, unfortunately.
Posted 11/22/2009 1:07 PM (GMT 0)
Hi journy2health, I'm kind of going through the same thing right now. Started at 50mg. for just 3 days then 40 for 10 days but soon as I went to 30 the bleeding started again. So I decided last night to go back up to 50 and try 45 to 40 to 35 and so on for just 7 days each to see if it would hold a little better. I see the Dr. next monday so hopefully what I decided on my own won't be anything that will create more problems and will be able to get more pills. It seems to me that jumping from 40 to 20 would be an awfully big jump. Ask your Dr. if maybe tapering slower would help.
Posted 11/22/2009 1:20 PM (GMT 0)
My guess is that the first pred taper ended up being too quick for you, so the second one should have been done at a slower pace.

Now that you're already on pred, instead of tapering off without getting into remission, if you want, you could ask your doc about going back up to the previous dose at which you were good (20mg or even 30mg?) getting things back to normal, stay at the that level for a couple of weeks, and then taper down at a slower pace. Or it could be that pred will just not work for you at lower doses -- and that does happen.

Unfortunately, there's no specific science to tapering pred, and it really depends on how it's working for you, and how things change when you start tapering down.

This is a strong drug and doctors should tailor the taper in a more specific manner, depending on how things progress, instead of just offering general guidelines as they often do.
Posted 11/22/2009 2:49 PM (GMT 0)
I'm tapering from 15 mg to 10 mg today and will stay on that for a week until I taper down to 5 mg. I've been on it since Sept. 1st and I am eager to get off the drug, but Rio's right, it seems as if BMs need to have some normality before tapering continues otherwise another drug may have to take its place. This is my second taper also and the first time, I reached 10 mg and I started flaring worse than the initial flare but my BMs were kinda funky still. I'm hoping and praying this won't be the case this time but my BMs are normal now. I am also on a lot of meds to help "bridge" the taper of the pred and keeping me in remission. It's a bittersweet thing, this prednisone. Gives you a feeling of false normality in some cases but it saves our asses...
Posted 11/22/2009 4:21 PM (GMT 0)
My doctor says don't pass judgment based on what's happening for a few days. Right now, I'm optimistic about jumping down again or in denial that I'll have to go back up to 20. Haven't slept in the past few nights because of prednisone and don't think I've been drinking enough water. Diarrhea, but no blood, no pain, no puss... I'd like to tough out the taper if at all possible.
Posted 11/22/2009 4:21 PM (GMT 0)
My doctor says don't pass judgment based on what's happening for a few days. Right now, I'm optimistic about jumping down again or in denial that I'll have to go back up to 20. Haven't slept in the past few nights because of prednisone and don't think I've been drinking enough water. Diarrhea, but no blood, no pain, no puss... I'd like to tough out the taper if at all possible.
Posted 11/22/2009 11:27 PM (GMT 0)
Jumping from 20mg straight to 10mg can certainly lead to issues. I understand you want to get off the pred, but such quick tapering could just make things worse. I'm in the middle of my taper and I went down 2mg each week from 20mg to 10mg and now I'm going down just 1mg per week from 10mg to 0. Of course, this means my taper alone is 3+ months, but it should hopefully mean I have no issues getting off the pred. My doctor also told me that if I wake up feeling really bad, I can go back up 1mg until I feel better and then start tapering again.
Posted 11/22/2009 11:35 PM (GMT 0)
Hi PhD student, thanks for the advice. My doc is aggressive, this is my second taper and each level is at 2 weeks. I'll talk to him about this... That's a lot of trazadone you're taking... for sleeping??
Posted 11/23/2009 12:09 AM (GMT 0)
I'd also ask your doc about rectal meds. Using them could help you get off the pred successfully.
Posted 11/23/2009 11:10 AM (GMT 0)
I had a GI that kept trying to taper me too quickly.
My current GI had me taper 1mg every 3-4 weeks when I got below 10mg.
It worked.
Posted 11/23/2009 10:29 PM (GMT 0)
Oh the joys of my first taper. Down to 20 for two days now and definitely had some gassy almost D bowel movements yesterday, but hopefully that will settle down after a few days.

I'm finding that when I go down (by 5mg each time) it takes 3-4 days for my body to adjust to the new level. So like I'll have 5-6 BMs for the first few days (and also aches and pains and whatnot) and then it'll settle back to 1-3/day. After I'm "normal" for three days in a row, then I know I'm ready to go down again. It's annoying, but I'm trying not to panic about it because I feel my energy coming back slowly. I even went for a walk/jog this morning! Woo hoo.

I don't want this stupid moonface anymore!
Posted 11/24/2009 1:50 AM (GMT 0)
Doctors' prescribed tapers are usually much too fast, period.
Posted 11/28/2009 8:38 AM (GMT 0)
Storysinger, so you are saying that at a prednisone drop you might initially have a few bad withdrawal days with return of symptoms but if you tough it out your body will adjust to the new lower level?

It doesn't make sense to me. I freak out and feel I'm really sliding and I'll end up in the hospital.

Please elaborate on that.

Ellen
Posted 11/28/2009 10:20 AM (GMT 0)
Ellen,
I heard others say that same thing. They taper and get worse but if they stay the course their body adjusts and they get better.
I've tried that but my getting worse is alarming. I get more blood, more diarrhea, dehydration, pain, weakness and fever. This is hospital material for me.
It might be the folks that are advising this are not in as bad a flare as me. They may not have severe pancolitis, only moderate left-sided colitis or proctosigmoiditis.
Posted 11/28/2009 9:54 PM (GMT 0)
Burli, I have mild to moderate and I took a diarrhea/blood side that understandably freaked me out, at 10, and had a bad anxiety attack at the prospect of dropping to five, Mind you I hadn't been on prednisone long, but having had a water faucet of a first flare I never had even seen blood just brown water, so you can imagine my shock and fear when it showed up at 10, I was as high as 40...

My GI kept saying stick with the taper but his colleagues on the weekend disagreed (when I would usually call) I saw myself going back to the hospital.

Now my GI is so annoyed that he said, if you have problems on a taper go to the er.... grrrrrrr. And what's going to happen at the ER. A recommendation to increase the prednisone or if fever present, etc... another bounce into the hospital... I think he was annoyed that I called him on Sunday...
Posted Yesterday 8:56 AM (GMT 0)
Well, whenever I go down by 5mg, for about 2-3 days I'll go from the 2-3 BMs/day range with little noise and no D to 6-7 BMs per day, lots of weird gut noises, increased urgency and gas, and sometimes 1 or2 of those BMs will be D. I've not had blood return, that would freak me out. After a few days at the new dosage, I go back to the solid 2-3 BMs/day with better control, less gas, and no D. Then I'll decrease again. Repeat cycle.

But before the hospital, I was at 10-15 BMs a day, all blood and mucous and such.

I did have one "freak out" moment when I first go out of the hospital and switched from the IV to the oral steroids I got a return of really bad symptoms-- 12-14 BMs, with bloody D and the whole shebang. I thought I was gonna have to go back. After three days I was an emotional wreck.

The next day... I was fine. It was amazing.

I think that's how I learned to wait and let the adjustment happen without freaking out.
Posted Yesterday 4:57 PM (GMT 0)
I'm at 20 mg and still having diarrhea, but some formed bowel movements. I'd feel more confident in tapering if the diarrhea would subside.

I hear where you are with ithis... I'm happy you are getting married soon...
Posted Yesterday 8:44 PM (GMT 0)
My GI says than many people while tapering "hit a wall" at around 10 mg/day. He said that is near the level that the adrenals normally produce, and getting them restarted is the cause.

Anybody have this experience? Since I'm now at 15, having tapered rather rapidly from 60, I'm quite interested.
Posted Yesterday 10:38 PM (GMT 0)
I read this... cordyceps sinesi, adrenal gland extract and licorice help with adrenal deficiency...
Posted 12/16/2009 3:33 PM (GMT 0)
One year into my first flare-up and started PRED on 11/24. I started on 40mg per day. After 10 days I went to 30; another 10 days and I am on 20mg day and my doctor wants me to stay there for two weeks.

New to taking steroids and being in flare. The PRED has helped, going less and stools are starting to firm up. Does this taper make sense or is it too fast?

Post Edited (tryingtoheal) : 12/16/2009 8:56:32 AM (GMT-7)

Posted 12/16/2009 4:40 PM (GMT 0)
I personally don't think it's too fast. I did 40mg for 5 days, 30 for 5 days, 20 for 5 days, 15 for 5 days, 10 for a couple of weeks, and 10 every other day for a couple of weeks.
Posted 2/13/2010 10:00 PM (GMT 0)

My search for pred tapering led me to this site for which I am grateful.  I'm taken back at the number of young people that are this medication.  My own research lead me to believe I was hastily Rx'd pred. when there appears to have been others drug/txmt options. 

 I have been on 10 mg. Predinsone/day since July 8/09.  I had no idea what road I was heading down, otherwise I would have refused the Rx. I was diagnosed with polymyalgia Rheumatica at that time, an auto-immune dysfunction that defaults back to adrenal insufficiency.  I showed up at my appt. with all related blood work that would help with my diagnosis.  I was referred back  to lab for a sedimentation rate test for confirmation of PR.  Bingo!

 

I too, on the advice of my internist, tapered my Rx:  10;10;10;05;05;05;10.  Within the 7-10 I had a nighttime episode of vomiting; nausea; bowel emptying with little sleep.  I was so exhausted I swiftly returned to the full 10mg/day.  That was enough to cause me to better understand this prednisone.  I returned to my Internist with questions about my adrenal function and related hypothyriod component. (Hypothyroid since '94) He brushed off my concerns and questions with " you would win the Noble Peace Prize in medicine.." if I could solve that mystery.  Needless to say, that was not what I was wanting to hear.

He reinforced my time on the meds as likely up to a year.  Well, a year is just five months away...I would like to be off it by then.  By the stories on this site...the challenge is great.  I don't like what I have read.  My bottom line, maintain a positive attitude, remain grateful for the fact I'm only on 10 mg/day and never give up.   I will continue to work to find a tapering schedule that will work for me.  Good luck to all

Posted 2/14/2010 12:22 AM (GMT 0)
I am doing 40 for 7 days, 30 for 7 days, 20 for 7 days, 15 for 7 days, 10 for 7 days, 5 for 7 days, then ? I am doing okay so far but I am worried about getting off completely. Will the remission remain? I hope so. I have had times when I was on 30mg and I didn't feel I was quite ready to go down to 20 so I waited an extra day or two. Go with how you feel, don't rush.
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