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Ulcerative Colitis
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Posted 10/15/2007 3:33 PM (GMT 0)
Bratcat is still not in remission. She has been on 60 mg of prednisone for a week along with her asacol. She is also taking nightly hydrocortisone enemas. She feels better than she did but still spends the first several hours back and forth in the bathroom. She has gone to school for 3 hours last Wednesday. I wake her up at 5 am to get her to school sometime during the day but school ends by 2 pm so timing sucks.

The doctor had mentioned that 6-mp would probably be the next step. I know it takes time for it to kick in so she would have to take something along with it. He mentioned endocort (entocort, not sure which).

My question is how long do we wait to see a change before her going on 6-mp? Honestly we can't remember last year when she was sick how long it took for her to finally start to get back to school. What side effects will she get with 6-mp? What else can anyone tell us about changing meds?

Part of the problem is admitting that the asacol and rowasa alone may not be working anymore. We think this flare started when she lowered her rowasa just a bit too much this past summer. Thought we might have caught it quick enough but it doesn't seem to be the case.

Thanks for your input.

Posted 10/15/2007 4:23 PM (GMT 0)
I started seeing an improvement around the 7th week mark. When I started I was still on the hydrocortisone enemas in addition to Colazal and I didn't stop the enemas until I was on 6mp for about 9 weeks. Then I slowly tapered off them. Usually when a Uc'er goes on 6mp they should continue with the 5-ASA's to keep inflammation at a minimum. 6mp stops our immune systems from attacking our colon while the 5-ASA's contains the inflammation and helps prevent minor blips or flares. I often feel like I'm overmedicated but I know that if I was to stop one or another med, that I will be back to the way I was. I didn't start seeing a true difference in my symptoms until about 3 months - then it was like a switch was thrown. All my symptoms disappeared instantly. In the beginning, I had slight nausea, fatigue, headaches and minor hair loss. Most of these symptoms disappeared over time and it helped immensely by taking it at night.
Posted 10/15/2007 4:28 PM (GMT 0)
Have you asked GI about the possibility of switching to another oral 5-ASA, Colazal or Lialda? Some of us do better on one of these meds than while taking the others. I don't doubt that Bratcat is having a rough time mornings; they're usually dreadful for any UCer who's flaring. Has she ever tried using Cortifoam (10% steroid rectal foam that looks like shaving lather) to speed healing in the rectum? Worth a try-- less of this med is absorbed systemically than with the steroid enemas or Pred. / Old Hat (nearly 30 yrs with left-sided UC; currently tapering Colazal after July flare in descending colon; remission near)

Posted 10/15/2007 4:39 PM (GMT 0)
My 15 yo son started to have a terrible flare when we tried to decrease his Rowasa about a month ago. We put him on Colazal 3 2x/day and that seemed to help him. He is on Rowasa 3x/week now and 3 Colazal per day....so far so good. I have learned here that it may not be that the 5-ASA drugs are not working but they are not reaching the inflamed area. 'agree with Old Hat to try another form of ASA.

BTW, my son was on 60mg prednisone IV for 3 weeks in the past & in ICU for many weeks-he had pancolitis at the time and suffering terribly. Pred did nothing to help.

Mom of 15 yo son currently on Rowasa, Colazal, many supplements & vitamins
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