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Weaning off Prednisone

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Ulcerative Colitis
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Posted 5/27/2010 3:39 PM (GMT 0)
I have been on prednisone since January.  I've been able to successfully come down from 60mg to 20, but I can't seem to get under 20 without flaring terribly (blood, 12+ BM per day, etc).

I am feeling pretty down about it; I feel like I am trapped on this drug.  The side effects are terrible, as you all know, I'm sure.  And, it's not even working.  I'm still flaring mildly (6-8BM per day and mucus).

Can anyone share a success story of successfully weaning off prednisone after a long time on it?

Posted 5/27/2010 3:52 PM (GMT 0)
Hi and welcome to HealingWEll!

Congrats on the birth of your baby boy! I also flared after my son was born (but it was my first flare)...so I know how tough it is, but I don't think I was quite as sick as you are.

Honestly, I think I'd be consulting a surgeon if I were you.
Posted 5/27/2010 3:59 PM (GMT 0)
I'm starting to think the same thing....which scares the crap out of me (no pun intended). I'm terrified but I can't keep living this way. I just started the 6MP, so maybe maybe maybe? I just don't know what to do anymore.
Posted 5/27/2010 4:00 PM (GMT 0)
Have you tried rectal meds, either Rowasa or steroid-based, to help support the other end as you taper?
In my fist flare, I was on Pred for about 2 years, going down and back up again.... I did use rectal meds, and they helped, and I did meditation and some visualization (partly getting my ideas from Bernie Siegal's book "Love, Medicine and Miracles")...and eventually I did get off it. I went real-l-l-y slowly for those last 20 or so mgs.

Good for you trying the probiotics. My son's GI has a story about a kid some years back 0 they'd tried everything, nothing helped, and finally in a "What the heck" moment they tried VSL - and he came out of the flare! So, you just never know what might help!
Posted 5/27/2010 4:12 PM (GMT 0)
The last time I went into remission, it was after I went nuts on probiotics (specifically Goat's Milk Yogurt in huge quantities). This time, it didn't work - but I am trying different kinds in the hope that something will stick.

I am seeing a lot about the rectal meds on here but my doc has never mentioned any to me - I will bring it up at my next appointment for sure.
Posted 5/27/2010 5:35 PM (GMT 0)
I've been on pred for 3 months now and my second taper is failing at 20mg. Although, I added an oral 5 ASA in again and suspiciously *now* my taper fails. It failed last time when I added in Lialda at the 25mg mark. This time I did the 30 to 25mg no problems. Then I went 25 to 20 and added Apriso and have been having pain for a 9 days. I'm trying to determine if it's the mesalamine. Either way I'll probably be starting Remicade next week to try and get off pred. because my doctor doesn't think I'll be able to get off with Imuran alone. ;o(

Maybe you could try Humira?
Posted 5/28/2010 9:59 PM (GMT 0)
I am in the same boat. I went down to 2.5mg and symptoms came back. Then I went back up to 15mg and got down to 1.25mg and then terrible symptoms returned and have been dealing with them ever since. I think a lot of people successfully get off prednisone, especially with adding 6mp but it takes time. I think a lot of people on this board have really tough cases. Not sure if it is an accurate representation of people with IBD. I hope you find something that helps you soon.
Posted 5/29/2010 11:52 PM (GMT 0)
I have been on Pred since Jan as well right now 20 mg per day got down to about 15mg when blood came back down from 40mg what type of side effects are you having? I feel really rundown and beat up almost all the time an night sweats is that anything anyone else has had or worse?
Posted 5/30/2010 1:37 AM (GMT 0)
TP, yes, I have had this too. You're not alone. I wake up sweating every night. That's when I sleep... What meds are you on?
Posted 5/30/2010 1:59 PM (GMT 0)
I know eactly how you feel. I've been on Prednisone since January as well. I was tapering once & started flaring so they bumped me back up to 60 mg again. I started to taper again & was finally able to get off about 2 weeks ago. Now... I'm starting to flare again. It's so incredibly frustrating especially becuase I get the "moon face" very badly & am in my friends wedding in a couple of months. So.. the LAST thing I want to do is go back on. I'm actually very open to surgery at this point. I think that long-term.. .it's so much safer than prednisone...
Posted 5/30/2010 8:34 PM (GMT 0)
Had you taken oral Mesalamine before this flare? Looking at all of the meds you are on, I'm just wondering if something you have in the mix is working against you. Could it be the Lialda?
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