HealingWell
Search Close Search
☰

Off Pred. 1 week, now problems!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/23/2008 3:28 AM (GMT 0)
We were so darn close! Finally, thru a VERY slow taper, got off the Pred. Didn't cheat, accepted to slow consequences, and within 1 week, the bad stuff is coming back. Cramps, formed stools but increased frequency (7 small eliminations today) and the first trace of blood. We've survived a few weeks of no appetite, cranky/sad moods, and fear of an upper GI blockage.
Now, my daughter would rather have her hair lit on fire than go back on the pred., doc appt not till Aug 14th. Need your thoughts: Do we ride this out and her body adjusts by itself, or am I kidding myself, and this is really the start of a flare that will need attention? I hate to let it get ahead of us. She is on 6 Asacols and has left sided UC. Also 60 mg of 6MP . Rectal meds created quite a stir the last 2 times she tried---she can keep them in, but the BM's increased to 20 or so, so we are too afraid of them for now.
We were close to trying to go on an antibiotic for the acne on her poor face, but we can't risk it now that the threat of a flare is knocking at our door.
Thoughts? Have any of you come out of a small flare like this without going back on the dreaded Pred?
Thanks in advance.
Posted 7/23/2008 1:36 PM (GMT 0)
A lot of people have had trouble getting off prednisone - including myself. Remicade was the only thing that worked in my case but you might have other options like increasing the Asacol or the dosage of 6mp. She may not have been on the 6mp long enough to make any kind of difference. I would call the doctor because unfortunately it seems like once there is blood the flare usually worsens. Also, the timing of the flare makes me think she might be steriod dependent, which many of us are or were. Once it's out of your system the problems return. Hate to hear your daughter is having to go through all of this. Hope things get better soon. 
Posted 7/23/2008 3:06 PM (GMT 0)
TO taper, I think we went down in 5's. Started so long ago, it's hard to remember. At the end we went down in 2.5's. From 50 oral, then slowly to---- 10-7.5 to 5 ( 2 weeks each) and the 2.5 for 2 weeks and then alternating 2.5 and zero for 2 weeks. She had a few cramps along the way, but no urgency or blood.
Moon face left at around 10. Acne stays nasty.
Today seems a bit better. We're only at 2 with no blood. Perhaps she'll fight it off. She's been on since early Feb. Guess that is long enough to get dependent? The 6MP levels were at 191, with 200 being the goal. So, they should be working by now.
Thanks for your interest.
k
Posted 7/24/2008 10:21 PM (GMT 0)

I was on daily doses of prednisone for a very long time, and I had very little luck tapering down.  Everyone is so individual to steroids, but tapering to the lowest effective doses is what I tried to do.  I have been grateful that I am now off steroids for almost 2 years now, (I am on a organic drink daily).  But for years, prednisone was the only control for me, regardless of stress levels, or my dietary intake.  Good luck with your weaning of prednisone, as you already know, the lower the better.

-----------------------------------------

yuckygut

diagnosed 1998

now off colazal and prednisone

drink 1 Haldi daily

Posted 7/24/2008 11:05 PM (GMT 0)
how about increasing the pro biotics and see if that helps??? Which rectal meds was she on? If she was on the cortenemas, how about trying the rowasa, or vice versa?
✚ New Topic ✚ Reply