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Posted 2/19/2013 6:03 AM (GMT 0)
I usually got 4hrs of sleep a night. It does carry you.

I would say taper by 5 not 10. Also make sure. Youve got a maintenance drug going to keep you off the pred when you taper.
Posted 2/19/2013 6:05 AM (GMT 0)
I don't understand why the doc didn't up the steroid enemas first....3 weeks is a drop in the bucket...and you don't have diarrhea meaning it's limited.

Can't you give it another 3 weeks?

My only concern...you'll feel worse on the pred..then what?

q
Posted 2/19/2013 6:25 AM (GMT 0)
Like everyone will tell you...everyone is different and responds different.

Someone said that the prednizone will carry you....this is true!  The side effects were not too terrible for me.  If I could give any advice...watch your weight.  I gained 15lbs in one week and it is HARD to come off.  I lost a ton of hair :(.  The moodswings were not too bad.  I did have some anxiety though. 

Just take it day by day.... I was scared to taper and it went well for me.  I've now been off of it for almost 2 months and lowered my 5-asa :-)

Posted 2/19/2013 10:36 AM (GMT 0)

quincy said...
I don't understand why the doc didn't up the steroid enemas first....3 weeks is a drop in the bucket...and you don't have diarrhea meaning it's limited.
Can't you give it another 3 weeks?

My only concern...you'll feel worse on the pred..then what?

q

up them to what? Im on the nightly. They typically work within a week...they arent like Rowasa where it takes a long time. I think my symptoms indicate severe inflammation, not limited. All I can do is what my doctor tells me. Hes the expert, not me.

OldHat - yeah, I looked at CCFA's dr list...but my first GI was on that list and he was the worst doctor Ive ever had so I dont really trust that list. Also, I looked through old posts and it looks like most everyone takes all their pred at once in the mornings to minimize insomnia side effects. Looks to be the norm for doctors to prescribe it that way.

Thanks Mark! :)

Madcat -- I'll be on Asacol and re-start rowasa when i taper.

Post Edited (Sara14) : 2/19/2013 4:29:44 AM (GMT-7)

Posted 2/19/2013 12:40 PM (GMT 0)
You will feel great on prednisone. It brought me instantly into remission the day I took my first dose. I am currently on entocort and it is nothing like prednisone. i am actually calling my doctor right now to ask if he could make the switch. I am just waiting for the 6mp and allopurinol to start kicking in.
Posted 2/19/2013 12:46 PM (GMT 0)
I sure hope so! :)

Do you all usually stop rectal meds while on pred and add back in when tapering? My GI advised I stop the hydrocort enemas while on pred but I didnt ask about adding Rowasa back in.
Posted 2/19/2013 1:25 PM (GMT 0)
I'd stay on the Rowasa. I was on Asacol and Rowasa (nightly) both the entire time I was on pred.

Like Old Hat said, I had a really great experience with pred. I started out at 40mg and was only on that much for 5 days. Then I dropped to 30mg for 5 days, then 20mg for 5 days -- after that, I've sort of forgotten how I tapered. I can't remember if I dropped to 15mg for a little while first, or if I dropped straight to 10mg. I do know that I tapered from 10mg every day to 10mg every other day, and that I stayed on the 10mg every other day dose for longer than what my doc thought was really necessary, just to get me though a job interview. Then I stopped.

Also, he had me split my dose. When I was on 40mg, I took 10mg at breakfast, lunch, dinner, and bedtime. When I dropped to 30mg, I dropped the 10mg bedtime dose, and so on and so forth. He thought it would be less suppressive to my adrenal glands.

The only side effect I had while on pred was a small case of the munchies, but that really didn't hit until I had already started tapering, and my GI and I both figured it was because I was finally feeling better and had an appetite again. I slept like a rock the entire time I was on pred, too! I was completely exhausted, though, because I had slept so very little in the months leading up to going on it, given that I had both a newborn and nocturnal diarrhea! My son was old enough by the time I started pred that he was only up 1-2 times at night, and my husband would usually get up with him as he was on formula by that point.

I also think that the 10mg every-other-day dosing really helped wake up my adrenals and helped me taper off successfully. I did have some up-and-down days when I was coming off the pred (no bleeding or anything, but some urgency and some diarrhea), but my GI urged me to just hold tight and not jump back on pred, because things weren't getting worse.

At any rate, I hope you have similar success!
Posted 2/19/2013 2:11 PM (GMT 0)
Well I took my first dose and I'm still alive! lol. His taper schedule is every other week.

fruitgirl - I stopped the Rowasa 3 weeks ago when I started the hydrocort enemas. I think I'll just re-start when I taper pred. Thanks for sharing your taper schedule!

I hope this stuff works for me.
Posted 2/19/2013 5:00 PM (GMT 0)
I was going to suggest the steroid enemas twice daily.

But since you're on the pred...add the Rowasa when you start to taper.
q
Posted 2/19/2013 5:06 PM (GMT 0)
In a million, gazillion years I never would have thought I'd be so excited to find out how many times a girl takes a crap in a day ;)

hahaha, Good lord...
Posted 2/19/2013 5:13 PM (GMT 0)
LOL Mark! How long did it take before you noticed the pred kicking in? I feel pretty good so far today. Only 2 BMs so far. Lol

I think my flare is up too high for the enemas to reach it all, quincy. I will reatart Rowasa when I taper though.
Posted 2/19/2013 6:29 PM (GMT 0)
As Fruitgirl mentions, the adrenal functioning is key. Pred should not be toyed with because of it. RE hydrocorts: you would have to stay on them way too long to get a systemic effect on right side inflammation-- whereas Pred will tackle that immediately. For the long term you could consider a switch to Apriso as oral 5-ASA, in case Asacol doesn't work for you at this stage in your UC career. (Capsule usually dosed at 4/daily.) Good luck, take it easy, don't push yourself-- give the Pred a solid chance to work well for you. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/19/2013 9:46 PM (GMT 0)
Thanks OldHat. Makes sense. Feeling pretty good so far today, 4 BMs, no blood so far.
Posted 2/19/2013 10:54 PM (GMT 0)
Pretty much over a few hours - say 24. But for me when I started this time I was 20-30 times a day in the can - so that went right away down to say 4-5 pretty much overnight. Same number of trips to the bathroom going forward after a day or so, and sometimes only 2 times but things felt different i guess. Hard to explain... Blood went away right away for me.

Took a few days for the number of times to decrease substantially. And about a week for a noticeable decrease in mucus. The main thing was no more pain when going and no more of that awful feeling of always have to go except say right before I did lol.. and D went away right away.

I'm curious of how your veggie diet... err vegan diet is going to go with Pred... I keep trying to make the switch but it just doesn't quite agree with me for some darn reason. Certainly does lesson the side effects noticeably though in my case. - especially the insomnia.
Posted 2/20/2013 12:00 AM (GMT 0)
I feel a million times better today than I have in the past three weeks. Im exhausted because I didnt get much sleep last night. Yeah, hopefully my veg diet will be ok. I dont really have anything to compare it to because I havent ever eaten meat since Ive had UC. I used to eat eggs and dairy though. As long as I can stay away from the sugary treats, I should be ok. I had a tempeh-avocado sandwich and mashed potatoes with spinach and garlic in them for dinner tonight and had no issues. Had a couple bananas, a bagel, almonds and an apple earlier. I did have a coffee earlier which probably wasnt a good idea. I drink green tea as well. I think I want to cut out caffeine entirely.
Posted 2/20/2013 3:50 AM (GMT 0)
So awesome to hear! ... get a good nights rest cause hopefully catching back up on life is going to keep you very darn busy for a while now, haha.

PS
The home made coconut water gatoraid thing I mentioned keeps me from the sweets - if i down one of those when the craving hits. Or I force myself to eat something like fruit or salad'y first before caving in, then the craving usually subsides. You could try that perhaps.

Everyone is so different though so it makes it more of a trial and error thing.
Posted 2/20/2013 2:46 PM (GMT 0)
Wow, it sure is awesome feeling NORMAL!!!

Fruit curbs the sweets cravings for me too, Mark. I will have to try coconut water sometime. I've heard good things about it.
Posted 2/20/2013 2:52 PM (GMT 0)
I'm glad you're feeling better! Pred was like that for me, too. I was having 10-ish BMs when I started it (so not too bad, but I'd been flaring for like 4 months at that point) and by the next day, I had about half that, then was down to one a day shortly after.
Posted 2/20/2013 4:59 PM (GMT 0)
Since you are feeling that much better this soon, maybe your doc can prescribe a faster taper??

q
Posted 2/20/2013 5:03 PM (GMT 0)
I'm not perfect yet, just a lot better than I was.
Posted 2/21/2013 1:52 PM (GMT 0)
So when do all the side effects usually start? I dont have any so far but only been three days.
Posted 2/21/2013 1:53 PM (GMT 0)
I never had any until I got the munchies, but that was at least 2-3 weeks into the course. I was lucky!
Posted 2/21/2013 1:54 PM (GMT 0)
Cool, thanks!
Posted 2/21/2013 8:18 PM (GMT 0)
Feeling really good UC-wise today. Only 2 BMs, both this morning. I got in to see Dr. Rex March 27 so it wasn't as long as a wait as they told me it would be.
Posted 2/21/2013 10:26 PM (GMT 0)
Good deal, Sara! Sometimes there are cancellations-- other times one can get in faster if they know the recommending MD personally. I just celebrated 23 yr anniversary with my gastro, who makes my life a whole lot better-- and who goes w/o adequate sleep to stay on top of IBD developments, very dedicated. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
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