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Prednisone Tapering Question

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Posted 5/20/2010 3:12 PM (GMT 0)
So, I'm tapering the pred very slowly this time, but I've noticed that my body doesn't seem to recognize a drop until day 4-5. And then I have 1-2 days of colon grouchiness in the form of crampies and mild pain (stools seem to be holding well at 1-2 formed in the AM sometimes with small amounts of mucus) that seems to clear up after a few days. I know it's that my whole body is recognizing the step down because my knee also hurts more today and I have a had a lot of extra anxiety this morning. Has anyone else experienced this?
Posted 5/20/2010 3:29 PM (GMT 0)
Gosh, I so remember being there! And the grouchy or blue moods that used to hit me with tapering - ! And the reappearance of minor symptoms as the body complained about the reduced dosage. And I think there are a number of threads about aches in regard to tapering!

I can't remember if you've said; have the enemas not helped you....? Otherwise I'd ask if doing some of those might help support your colon through the tapering process.

I believe I finally got off my 2 years of pred through meditation and visualization - I used to visualize my own body's response as looking like little Pac-Man type guys chasing off the inflammatory guys (who looked like pirates)... and also, I attempted to pep-talk my own adrenal cortex into waking up and taking over again.
I've not admitted all that many times... now you all know how crazy I really am. But at that time I was an HIV counselor, early in the AIDS crisis, and the support group I ran was exploring complementary methods... and what can I say? I did get off the pred..!

Hang in there!
Posted 5/20/2010 3:44 PM (GMT 0)
Wow, you really think visualization helped with your Pred taper? That's cool.
Posted 5/20/2010 4:02 PM (GMT 0)
We are adding Apriso at the moment. My doctor has me adding 2 pills for a couple of days, then 3 for a couple, then up to a normal 4 pill dose. It's unclear whether my body is tolerating mesalamine at this point or if it just really didn't like lialda. So, after we get the Apriso going we will look at adding enemas. I think my doctor is trying to do things one at a time as much as possible so we can get a clear picture of what is working and what isn't. From 20mg down he has me tapering at 2-3mg a week. So, hopefully the Apriso and Imuran will have plenty of time to take over and these step down symptoms are just blips! I just think it's weird that for me the blips show up after a few days. Isn't that kind of weird?
Posted 5/20/2010 4:17 PM (GMT 0)
I hope somebody with more recent pred experience will answer, but my memory is that my own blips were indeed as you say, after a few days and not immediately.
Posted 5/20/2010 4:32 PM (GMT 0)
Thank you Songlady! This is my first major flare first time tapering pred, etc. so not knowing what to expect how my body will react, etc. I freak out over every little thing.
Posted 5/20/2010 4:39 PM (GMT 0)
Isn't it great we have this forum to share these questions with?! Ask away at every little freaky thing - lol!

And, not to sidetrack your thread - but to answer Levi - yes, meditation... Bernie Siegal's book "Love, Medicine, and Miracles" was newly out then, and there were suggestions and "how-to's" in the back of the book, if I remember correctly.

Ugh, I found it to be a really helpful book as I headed out of my first big flare, is it's still around.
Posted 5/20/2010 8:23 PM (GMT 0)
     Yes, same symptoms as you.  I am tapered down to 5 mgm now and very anxious because I don't want to flare before my scheduled surgery on June 28th.  Hate being on prednisone this long (this time since January but on it more than off it for past year). 
Posted 5/20/2010 9:24 PM (GMT 0)
I am currently tapering and i notice the same thing. around day 2-3 i have more pressure down there with the urge to go. But i am trying to use the canasa supp. and watch what im eating to get through this. I am down to 5mg and will be done on monday hopefully...so excited to be off this crazy med!
Posted 5/21/2010 3:05 PM (GMT 0)
Yesterday was awful. Lots of pain. Still no D and only small amounts of mucus but wow am I feeling down! I'm hoping that the jump from 25-20 was just kind of jarring and that the Apriso will work well to balance things back out over the next few days. I'll wait to go down again until things feel more stable... :o(
Posted 5/21/2010 3:21 PM (GMT 0)
Is this the kind of thing an antispasmodic might be good for.....? Bentyl....?
I have not taken them at this point, so I don't know much about them except what I've read here. But - it's great you still have no D and only a little mucus!! - and, goodness, sorry about the pain.
I think it's wise to wait for the next Pred jump.
In addition to the pain getting you down, those downward jumps can do a number on your mood, too.
Hang in there!
Posted 5/21/2010 3:22 PM (GMT 0)
Is this the kind of thing an antispasmodic might be good for.....? Bentyl....?
I have not taken them at this point, so I don't know much about them except what I've read here. But - it's great you still have no D and only a little mucus!! - and, goodness, sorry about the pain.
I think it's wise to wait for the next Pred jump.
In addition to the pain getting you down, those downward jumps can do a number on your mood, too.
Hang in there!
Posted 5/23/2010 5:37 AM (GMT 0)
This is my first time taking Prednisone...and apparently it doesn't work for me..
SO...
I'm tapering off Prednisone.. Was recently on IV 40 mg / day. Left hospital with 20 mg 2x per day Prednisone 2 weeks. Now on 15 mg 2x per day for 2 weeks.. After 2 days days in I had cramps mild pain and knee pain. I have been trying to walk a lot due to severe muscle wasting in my legs...Knee pain only lasted one day. cramps seem to be easing.

The rest of the taper is supposed to go.
10 mg 2x daily for 2 weeks
5 mg 2x daily for 2 weeks
2.5 mg 2x daily for 2 weeks
Done

Is this too fast?

I read that introducing weight/resistance training will help transition off of Prednisone.. Presumably by increasing hormone levels.. Anyone try this or read about it?

I have bad fatigue and muscle wasting in my legs that I blame on the Prednisone.. Although I did lose 50 lbs in the last months hospitalization.

________________

39 year old male
First symptoms April 2010

Most conventional medications didn't work..
Currently
Remicade infusions 2 so far. NOT on Azathioprine (Imuran)

Tapering off of Prednisone (doesn't work for me apparently) 15 mg 2x per day. - Gives me Fatigue, Weak legs and jittery hands
Soon to stop Flagyl 3 x per day - Supposed to take until this Wednesday then stop cold turkey no taper
Nexium 2x per day - will probably keep for a while... don't want to change everything at once...

Vitamin D -
Daily multivitamin
Vitamin B-12
Fish Oil

Past Meds: Sulfasalazine, Mesalamine Enemas made me sicker. Prednisone apparently doesn't work for me..

Post Edited (PanUC10) : 5/22/2010 11:41:30 PM (GMT-6)

Posted 5/23/2010 1:14 PM (GMT 0)
I think tapering has alot to do with the ammount you taper. By percent a 5mg drop becomes a higher percentage 25-20 is only a 20% drop while 15-10 would be a 33% drop. So each time you decrease dosage your body has to make up for an increased ammount. Every time i get below 15mg my symptoms slowly return bleeding weight loss the whole 9 yards. This time I reduced by 2.5mg and once i got to 7.5mg I ask my GI for some 1mg tablets and reduced to 6mg then 5mg and am currently on 4mg and it has made tapering much easier Ive acutally gained weight instead of losing. The bleeding takes a few days to appear after a reuce in dosage I think because it takes time for your body to adjust to having to produce more of its own anti-inflamitory my GI said some people become dependant and their bodys natural system never picks back up and you have to be on prednisone forever.
Posted 5/23/2010 1:14 PM (GMT 0)
Thanks for the info. I still really have a lot to discover about my UC.

I was actually out of the hospital for a miserable 6 days between 12 day hospitalizations where I was on 60 mg oral Prednisone. I was getting IV solmedrol that was supposed to be equivalent to the 60 mg oral prednnisone that I started before . Yes I was on Flagyl the entire time. I left the hospital with what I thought was an immediate drop from the equivalent of 60 mg oral to 40 mg oral Prednisone.

Yes I would like to go/stay into remission with the taper. I think that the Prednisone is at least partially responsible me feeling a little better now.

What kind of Taper schedule is usual for getting off of Prednisone????

I am still on Flagyl for three more days.. I'll let you know if I feel different after I stop the Flagyl.
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