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Q's for those who have done the Prednisone taper

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Posted 2/18/2015 10:53 PM (GMT 0)
Alrighty, so my update is that the last 5 or so days have been pretty good with the exception of some mild cramping at night. So I was given the OK to continue my taper, from 35mg to 30mg. Last time I did this, it took a couple of days for me to start feeling off again, and I'll never really know if it was from the taper or from something I ate, etc. So I have a few questions.

-Does one bad tapering experience mean each one will be rough? Are there people who don't have any problems doing it or is it pretty much a promise that you will backslide a little?

-How long does this rough patch usually last? Is it milder than usual as you're healing?

-If things do start to go awry, does that mean I wait it out (depending of course on just how bad it is) until I stabilize again or do I need to call the doctor, who will tell me to go back up? I already had to delay this second taper, but luckily I didn't have to increase back to 40mg.

Oh, and I have an Rx on hold for steroid enemas since the mesalamine seemed to disagree with me. I dread going back on enemas but hopefully if I do have a hard time, they'll help me get through it. So any positive thoughts on those are also encouraged! (They said the foams are "unavailable," whatever that means...)
Posted 2/18/2015 11:03 PM (GMT 0)
sorry but it is not that predictable. if you are on long term, you do need slow taper. if you are still flaring out of control it may be best to delay taper.

otherwise it is tapers not "the taper"

many can drop 5mg every 4-7 days w/ no problem. many have no backslides. but ti is very individual and depends mostly on your inflammation, then on you level of need for it to manage symptoms.

lots of individual variation. no way you recent experience predicts much of anything, except that you worry about it
Posted 2/18/2015 11:19 PM (GMT 0)
Yeah, maybe I should have phrased some of that better. I know, UC is very individual. I guess I'm just asking more for people's experiences. I should mention my schedule is supposed to be 5mg every 2 weeks.
Posted 2/19/2015 12:05 AM (GMT 0)
It's important to note that there two completely different reasons for tapering pred and they have absolutely nothing to do with each other. The first one is totally related to your UC condition and how the taper effects your symptoms. The second reason to taper pred is due to prednisone withdrawal symptoms. Right now you are only dealing with reason #1. When you get down to the lower doses you will have to deal with both very different reasons at the same time.
Posted 2/19/2015 12:09 AM (GMT 0)
Hi Glo, I finished my taper in December from 40 mg for 2 weeks, then drop by 10 mg each succeeding week. I felt fine, no symptoms other than frequency and occasional urgency. When I got to 20 mg blood, mucous and cramping came back, called the GI, went back up to 30 stayed there for 2 weeks, then began reducing by 5 mg each week. By the time I was to 20 again, this time no symptoms, then I went 15-10-10-5-5-off. Every incremental lessening of dose I had 2 days of not feeling well, increased frequency, urgency, but no blood, etc. But by the third day all was well. I tapered at the end much more slowly than my GI advised because of everyone's advice. I felt awful during the taper and for many weeks after, just huge fatigue, depression, insomnia, anxiety. I've been off Pred now for 2 months and am only recently seeing those side effects diminish....but I also started my LDN 3 mg and maybe that's helping too.

Good luck!
Posted 2/19/2015 6:10 AM (GMT 0)
I'm tapering now and down to 15 mg from 40 mg. I usually don't have any issues tapering but this time when I dropped from 40 to 30, I felt awful so went back to 40 and my doc had me stay on it another 7 days and taper by 5 mg. I don't think one bad tapering experience means they will all be bad. Just from reading this forum, everyone seems to have a different experience with pred. Last year, I had insomnia, night sweats, a little cra-cra and then when I was finally off pred, I could not get enough sleep. I was so exhausted and would fall asleep as soon as I for home from work. This year I've had no side effects except for my cheeks filling out a little. Someone suggested that once you're down to 5 mg for a week, then do 5mg every other day and I'm going to try it this time.
Posted 2/19/2015 2:47 PM (GMT 0)

garylouisville said...
It's important to note that there two completely different reasons for tapering pred and they have absolutely nothing to do with each other. The first one is totally related to your UC condition and how the taper effects your symptoms. The second reason to taper pred is due to prednisone withdrawal symptoms. Right now you are only dealing with reason #1. When you get down to the lower doses you will have to deal with both very different reasons at the same time.

Oh man...that is really scary. I knew about long term pred side effects, but I also have to worry about withdrawal? I forgot how people often have the hardest time getting off the lower doses. Yikes. shakehead
Posted 2/19/2015 2:54 PM (GMT 0)

zengrrl said...
Hi Glo, I finished my taper in December from 40 mg for 2 weeks, then drop by 10 mg each succeeding week. I felt fine, no symptoms other than frequency and occasional urgency. When I got to 20 mg blood, mucous and cramping came back, called the GI, went back up to 30 stayed there for 2 weeks, then began reducing by 5 mg each week. By the time I was to 20 again, this time no symptoms, then I went 15-10-10-5-5-off. Every incremental lessening of dose I had 2 days of not feeling well, increased frequency, urgency, but no blood, etc. But by the third day all was well. I tapered at the end much more slowly than my GI advised because of everyone's advice. I felt awful during the taper and for many weeks after, just huge fatigue, depression, insomnia, anxiety. I've been off Pred now for 2 months and am only recently seeing those side effects diminish....but I also started my LDN 3 mg and maybe that's helping too.

Good luck!

Thank you for sharing your experience. Wow, you felt awful for many weeks after getting off it completely? I am not looking forward to that! I guess it makes sense that the fatigue would kick in at that point. Fun, fun, fun!
Posted 2/19/2015 2:58 PM (GMT 0)

platinumpixie said...
I'm tapering now and down to 15 mg from 40 mg. I usually don't have any issues tapering but this time when I dropped from 40 to 30, I felt awful so went back to 40 and my doc had me stay on it another 7 days and taper by 5 mg. I don't think one bad tapering experience means they will all be bad. Just from reading this forum, everyone seems to have a different experience with pred. Last year, I had insomnia, night sweats, a little cra-cra and then when I was finally off pred, I could not get enough sleep. I was so exhausted and would fall asleep as soon as I for home from work. This year I've had no side effects except for my cheeks filling out a little. Someone suggested that once you're down to 5 mg for a week, then do 5mg every other day and I'm going to try it this time.

That's a little more encouraging. :) It's too bad we have to go through exhaustion afterwards. And since we're not supposed to have caffeine...
Posted 2/19/2015 4:44 PM (GMT 0)

GloGirl504 said...


-Does one bad tapering experience mean each one will be rough? Not necessarily. Are there people who don't have any problems doing it or is it pretty much a promise that you will backslide a little? Some have no trouble with prednisone dosage drops, while others do. It depends on whether your maintenance medications, if they are enough to sustain your current quality of life and uc symptoms without prednisone. You start backsliding (i.e., worsening of uc symptoms) when your maintenance medications are not sufficient.


-How long does this rough patch usually last? It may take 3 to 4 days for your body to adjust to a new prednisone dosage. Longer than that then you are clearly, regressing and that's a huge, waving red warning sign. Is it milder than usual as you're healing? You only drop prednisone dosage when you are mostly healed, otherwise the effort was entirely in vain.


-If things do start to go awry, does that mean I wait it out (depending of course on just how bad it is) until I stabilize again or do I need to call the doctor, who will tell me to go back up? If you are backsliding then go back to your last safe prednisone dosage snd contact your gastroenterologist for further instructions. I already had to delay this second taper, but luckily I didn't have to increase back to 40mg.


The longer you are on prednisone, the slower the taper rate is (i was on prednisone for a full year). The percentage of a particular doseage drop makes a big difference in the associated difficulty (e.g , going from 10mgs to 5 is a 50 percent drop). I was doing 1.5 mg drops every two weeks at the end of it, due to my length of usage.
Posted 2/20/2015 3:20 PM (GMT 0)
Every time I would taper, the symptoms came back worse than ever, so doctor would have me bump it back up again. When we finally tapered (with Imuran and Uceris) all I did was sleep and cry. I was absolutely fatigued beyond belief. But that is much better now and I'm getting more back to normal.

Someone said here "We are all special snowflakes."
No two experiences are alike. I hope you do well.
Posted 2/20/2015 3:44 PM (GMT 0)

iPoop said...

GloGirl504 said...


-Does one bad tapering experience mean each one will be rough? Not necessarily. Are there people who don't have any problems doing it or is it pretty much a promise that you will backslide a little? Some have no trouble with prednisone dosage drops, while others do. It depends on whether your maintenance medications, if they are enough to sustain your current quality of life and uc symptoms without prednisone. You start backsliding (i.e., worsening of uc symptoms) when your maintenance medications are not sufficient.


-How long does this rough patch usually last? It may take 3 to 4 days for your body to adjust to a new prednisone dosage. Longer than that then you are clearly, regressing and that's a huge, waving red warning sign. Is it milder than usual as you're healing? You only drop prednisone dosage when you are mostly healed, otherwise the effort was entirely in vain.


-If things do start to go awry, does that mean I wait it out (depending of course on just how bad it is) until I stabilize again or do I need to call the doctor, who will tell me to go back up? If you are backsliding then go back to your last safe prednisone dosage snd contact your gastroenterologist for further instructions. I already had to delay this second taper, but luckily I didn't have to increase back to 40mg.


The longer you are on prednisone, the slower the taper rate is (i was on prednisone for a full year). The percentage of a particular doseage drop makes a big difference in the associated difficulty (e.g , going from 10mgs to 5 is a 50 percent drop). I was doing 1.5 mg drops every two weeks at the end of it, due to my length of usage.

Thanks for the info, iPoop!
Posted 2/20/2015 3:47 PM (GMT 0)

Not Happy Yet! said...
Every time I would taper, the symptoms came back worse than ever, so doctor would have me bump it back up again. When we finally tapered (with Imuran and Uceris) all I did was sleep and cry. I was absolutely fatigued beyond belief. But that is much better now and I'm getting more back to normal.

Someone said here "We are all special snowflakes."
No two experiences are alike. I hope you do well.

Oh my goodness! That sounds absolutely awful. Thank you for the well wishes, I certainly hope it goes better than that.
Posted 2/21/2015 12:46 AM (GMT 0)
People taper differently. What my GI recommended wasn't right for me. I needed to go down by 5s very slowly, like 2 weeks at a time and then follow that up with 1mg tablets, cut in half, and then quarters.

I was fortunate that, as a physician, I could ask my friend to write my Rx exactly as I needed it. For those who don't have that luxury, I really do recommend asking your doc for a bottle of 5s and 1s and explain to them that you're going to be responsible about this.
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