Tapering down pred and UC getting much worse

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Regular Member

Date Joined Apr 2009
Total Posts : 208
   Posted 4/13/2009 9:59 PM (GMT -6)   
I am on 40 mg, never got it under control but down to about 6 times a day with less blood.
It's been 2 weeks and because of muscle pain and extreme fatigue, he's already tapering me back to 35 mg. The last
few days have been a nightmare and today I haad over 25 bms. I'm supposed to taper again to 30mg on Thursday.

If I call the doctor, what will he have me do? Bring the pred back up or something else? I don't know when to call and when to just
understand that everything with colitis works slowly.

What would you do?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 4/13/2009 10:13 PM (GMT -6)   
I'd call your doctor. It's hard telling what he'll have you do. I know that sometimes it takes a higher dose (60mg) to get the inflammation totally under control, but it sounds like you might not be able to tolerate that high of a dose.

I hope something works soon!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).

Regular Member

Date Joined Nov 2008
Total Posts : 112
   Posted 4/14/2009 11:38 AM (GMT -6)   
I have gone from 40 to 35mg pred in the past couple of days as well, and I do think I've noticed a difference, not for the better. I'm desperate to get off pred but I'm starting to fear dependency, which is so distressing to me. I feel so far from "normal" I don't even recognize myself any more. It seems hard to believe that dropping by only 5mg could have that much of an impact!
39 year old woman
Diagnosed October 2008

location: Vancouver, BC

Current meds: 40 mg Prednisone, 25 mg Imuran, low-dose antibiotics (Cipro/Flagyl). First Remicade infusion April 6/09.

Failed meds: Asacol, Pentasa, Imuran (maybe)

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 4/14/2009 11:43 AM (GMT -6)   
Did you talk to your doctor yet? Seems like you are doing all the things that work fast, prednisone and rowasa.
I guess I would be trying an even higher dose of prednisone, but be prepared for surgery if it doesn't get results quick. My doc bumped me up (to 40) for one day, and I was surprised how much that helped.
So sorry you are suffering so.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 4/14/2009 1:02 PM (GMT -6)   
Have you tried any other supportive supplements, besides the Culturelle probiotics, that may help you heal? I've found dietary manipulations and supplements that reduce inflammation and promote gut healing very helpful used in conjunction with meds. These things can help you reduce or eliminate your need for medications.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.

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