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Steroids for first flare

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Ulcerative Colitis
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Posted 11/13/2018 3:30 AM (GMT 0)
I wrote about my daughter in college who has had her first bad flare after her first colonoscopy. She finally saw the GI who prescribed her Lialda but told her to check back if that did not help in a few days. She is starting to improve slightly but still having urgency, cramps and bleeding several times a day. So the doctor responded with a prescription for 40mg Pred for 7 days then 5 mg less a day for 7 days then continuing to taper by 5mg a week until all done (total of 252 pills). This seems like a ton of steroids over a month and she is concerned about side effects while she is taking finals etc. (she got hyper from 3 days of steroids last winter for a throat infection).
Does this seem like a high/ long dose? The one time I had a bad flare, I think I was given very short term steroids. This makes me nervous.
Posted 11/13/2018 3:42 AM (GMT 0)
This is a pretty standard prednisone taper around these parts, it seems. I did it and I know a bunch of others posted about this very same taper. She can maybe ask for budensonide instead? That is supposed to just target the gut, so maybe she won't be so hyper?

I do want to say that I was pretty hyper on the 30-40 mg doses, so I made sure to take it at about 7am, and the hyper was done by 9-10pm. I also cut off the caffeine when I realized how hyper I was.
Posted 11/13/2018 3:48 AM (GMT 0)
thanks I just looked back and saw that I was given Entocort not prednisone. I think what ultimately helped me was the Rowasa but it is hard to have her do that when she is in a dorm. She comes home this weekend so maybe she can try some here at home.
Posted 11/13/2018 10:12 AM (GMT 0)
That’s a pretty standard course of pred.

I hate steroids. Like, haaaaaaaate them—pred causes diarrhea for me, so it’s an especially firey kind of hate cause I’m trading one kind of running to the bathroom for another, ever-so-slightly-different kind of running to the bathroom.

That said, as much as it’s hated, my choice (and your daughter’s choice, and the choice of anyone who’s flaring) is NEVER between objectionable drug side effects and being perfectly healthy. It is ALWAYS a choice between objectionable drug side effects and objectionable disease and we all just have to figure out our threshold for when side effects are more manageable than continuing the long-term suffering of a flare.

Personal experience suggests that moms have a particularly difficult time with their adult children navigating this choice. 😉

Just be real with her and yourself. She’s going to have to deal with some crap in the interest of getting better in the long run. If there were a way to manage flares without any side effects we’d all be all over that.
Posted 11/13/2018 1:35 PM (GMT 0)
If she's worried about pred, then try a steroid enema or foam 1st. Or try a delayed-release, oral steroid like Entocort EC, or Uceris 1st. The above mentioned things are 90% topical, and only 10% systematic. Whereas pred is 100% systematic, and the systematic part is what gives you the side effects. The topical steroids are only good for mild inflammation to slightly mild inflammation (say 4 or less bms a day). If she's really bad off (6+ bms a day) then just go with the pred as you're talking severe inflammation and that's what pred is good for.
Posted 11/13/2018 4:28 PM (GMT 0)
base on your definition she is more on the mild side. and I think her colonoscopy results are consistent with that. Thank you! Hopefully the doc will offer her something else.
Posted 11/15/2018 5:44 PM (GMT 0)
No, that's not a high dose. My first time on prednisone, I was on 40 mg for 2 weeks, then tapered by 10 mg a week. My most recent time on prednisone, my doctor had me taper by 5 mg per week and I had to start on 50 mg for a week.
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