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a couple of random questions

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Ulcerative Colitis
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Posted 12/3/2012 9:59 PM (GMT 0)
I hope it's not irritating that I keep mentioning I'm tapering prednisone, but I don't really expect anyone to retain my details, and that's sort of important I think.

Anyways, I'm having some BMs that seem to have a lot of water involved. It's sort of difficult to know exactly what's happening since I can't exactly see the play by play but for a couple of days, I have thought I had my regular D with blood but upon pre flush inspection, there is no blood, just some rather grayish looking poop.

I also wonder if the pale to gray stool means anything. I am also starting to have the occasional poop with some odor - gee that was a UC positive that I never thought to appreciate.

With a lot of prednisone talk on the forum, what's the deal with some doctors saying it's OK to quit pred cold turkey if you're only on it for a week? Is there 'evidence' that this is safe? I sort of have the feeling that they know that a few out of every hundred will suffer (and terribly), but the vast majority do fine. Does anyone know if this is studied in UC victims?

I'm on 15mg of pred since last Wed. I'm supposed to go down to 10 mg this Wed. according to my GI. I'm wondering if I should do 12.5 mg maybe on Tues , Wed, Thurs, then down to 10 on Friday; stay on 10 till the next Tuesday and do 7.5 mg for the three days and go to 5mg etc etc - that way I'm following Drs orders (and my prednisone supply) but tapering in lower increments?

Also, for those of you who go through a flare without prednisone, what is it you do? how do you cope with being so sick? do you just wait and waste while you wait/hope for improvement?
Posted 12/3/2012 10:54 PM (GMT 0)
I had a nose job and was on pred for one week. I had this beautiful nose coming out of surgery, then the day after I tapered off the week course, my nose blew up like a balloon.

If that was my colon, I would have been in trouble and should have stayed on the pred until more healed.

A lot of people take a week long course of pred for various reasons. I don't think UC is one of them.

I presented at the ER with a full blown flare, and the PA, who knew I had UC, told me to take 40 mg. pred for four days and then stop. I asked to see a real doctor. He obviously didn't know anything about UC.
Posted 12/3/2012 11:14 PM (GMT 0)
i don't think staying on prednisone for a week would do much for UC, but from the 3 pharmacists i've talked to, your body doesn't just stop producing cortisol. so that's why it's safe to stop prednisone before 2 weeks. after that, it can be risky because your body's production has probably went down a lot and the prednisone you are taking has taken over.
Posted 12/3/2012 11:26 PM (GMT 0)
Yeah. There are actually two different parts to the prednisone taper. Part 1 has to do with the effects of whatever condition (like UC) you have and part 2 is only solely related to the safety of the prednisone taper itself. As Joanna stated, it is safe to cut prednisone cold turkey if you have only been on it for a short time, especially if it wasn't a really high dose. In fact, it is probably better to just get the hell off of it quickly. If you have been on it for longer periods, such as more than 2 weeks, the withdrawyl symptoms can get increasingly bad and quitting cold turkey has even been known to put patients in shock, sometimes causing death. Now part one is a completely different story and there are so many variables to it that it is really hard to compare one story with another.
Posted 12/4/2012 2:10 AM (GMT 0)
I've pretty much been prednisone dependent since I was diagnosed in 2004. I think how you taper can vary. When I go on...I do 50mg x 10 days, 40mg x 10 days, 30mg x 10days, 20 x 10days, 10mg x10 days, then off. I suppose I'm so used to it that I don't notice a difference from 10mg to nothing...although some people do taper from 10mg to 5mg. Good luck!
Posted 12/4/2012 2:43 AM (GMT 0)
Really great feedback everyone, thanks. gary, your explanation clicked in my brain, I understand a little better what this drug is about now, the two parts scenario really makes sense.

After all the advice I've read on here, I think I should've stayed at my high dose till I was in much better shape, not just until things were improving. BG, you are right that a weeks worth didn't do a whole lot. Problem is, you need a doc to agree and prescribe. For now I'm almost back to my preflare symptoms, so I'll just hope for the best. I do understand what I have to consider if I flare up again and I plan to ask my GI if he'll agree to my logic and give me a script for pred just in case.

journey, I hope your nose is beautiful!

and EH, how often do you end up on pred?
Posted 12/4/2012 2:56 AM (GMT 0)
I used to be on Pred at least once a year, sometimes 2-3 times/year. At one time they tried me on a med called Entocort, which is supposed to have less side effects as it is more localized to the colon only (as opposed to the whole body). I wonder if that might be an option for you? It didn't work for me, but I've heard other people have had luck. I might also ask if there is anyway to push the oral meds higher? Just another thought. I hope it all goes ok for you.
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