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Newly Diagnosed Ulcerative Proctitis - Prednisone and Maintenance Questions?

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Posted 5/13/2017 3:37 PM (GMT 0)
Hello All,

I'm newly diagnosed with ulcerative proctitis and have just a few questions. My GI prescribed me Prednisone, Rowasa at night, and Canasa in the mornings to get me out of this first nasty flare. The prednisone taper schedule I was prescribed seemed rather quick to me (started at 40mg, but went from 30 mg for 5 days, to 25 for 3 days, 20 for 3 days, then to 15 mg). Everythign was going well, but the day my dosage went to 15mgs, I had a return of blood tinged mucus. I immediately called my doc, and he's bumping me back up to 25 mg for a week, then to 20 mg for another week. I have an appt with him at that time to discuss the rest of the taper. I want to take it as slow as possible. Any prednisone taper suggestions?

Within a day of being back up to 25, my symptoms went away. I still have a little bit of urgency in the morning, but I'm generally fine for the rest of the day.

My questions are is it possible to maintain remission with the use of rectal meds alone if I taper off the pred successfully? Also - my dr mentioned that if tapering off the prednisone doesn't work this time that it would be possible to put me on some of the immunomodulators/biologics. To me, this seems a little rushed. Do you think it would be helpful to add a steroid enema if I'm struggling? And is it true that an oral 5 ASA would be pointless because it cannot reach the rectum? My doc seemed to think that I would not benefit from that, but I'd like to exhaust all options before moving on to stronger meds.

I realize that patience is key, and I'm very happy with the progress I've made. I'm not sure if this was just a little blip due to the pred taper. Any input/guidance is greatly appreciated!
Posted 5/13/2017 3:56 PM (GMT 0)
Yes, it is possible to maintain remission with the use of rectal meds alone in the case of UP. You may be one of those people, or you may not. UC is very unpredictable.

I'd agree with your assessment that going straight from rectal meds to biologics is a bit rushed. If you can't get off the prednisone, I'd ask your doctor about transitioning from prednisone to Uceris (you can start taking Uceris while on a prednisone taper). Seems like that would be worth a try before going full bore onto biologics.

Also, I'd just say don't get too discouraged this early in the process. Your taper was a little quick so having to go back up to 25/20mg for a couple weeks is hardly a "failure" at this point.
Posted 5/13/2017 4:53 PM (GMT 0)
Thank you for your response and suggestion. I didn't think of Uceris, but I agree that it could be worth a shot. I also appreciate your words of encouragement. It was a bit disheartening to have symptoms reappear after feeling so much better, but I'm hoping it was a minor setback. Only time will tell. smile Thanks again!
Posted 5/13/2017 8:22 PM (GMT 0)
Steroids whether uceris or prednisone are meant for temporary use only. If you cannot sustain without steroids then yes immunomodulators (imuran/azathioprine or 6MP) make sense. There's no such thing as too soon. Disease severity dictates what we need and when. Some of us have leisurely strolls up the medication ladder, others have firemans sprints up the ladder. Proctitis can be darn stubborn and require strong treatments, you don't get an easy pass. You can prolong your flare as long as you want to do so. Or you can get aggressive in treating it.

Uceris is good for mild or moderate inflammation only.

Have you had a stool test for c diff?
Posted 5/13/2017 9:13 PM (GMT 0)
Yes, I'm aware that prednisone and uceris are both for short term use. I'm new to this, so I'm learning as I go. I'm certainly not trying to prolong my flare, and will be as aggressive with treatment as necessary. I suppose we will see what my trip up the medication ladder will look like. Have not had a stool test, just the scope confirming uc. Thanks for your input.
Posted 5/13/2017 11:24 PM (GMT 0)
Lanah, I'm sure it is discouraging to regress but it seems fairly common to have a bit a "blip" while tapering prednisone. While I haven't experienced much of a regression while tapering (just a bit of abdominal pain), I was VERY discouraged when I didn't respond to prednisone as miraculously as it seems everyone else does. After 5 days on prednisone, I ended up in the ER. Then they upped my dosage and things improved a bit but I didn't really start to get better until we added Apriso. I thought that since I wasn't responding well to prednisone, there was no hope. But now I'm doing reasonably well. I'm newly diagnosed also and you're absolutely right - being patient is one the hardest parts!

With regards to your question about 5-ASAs, I'm not sure. There are lots of knowledgeable folks around here with UP who can probably answer that question. However, I will say that, personally, Apriso (oral mesalamine) doesn't seem to do much for my rectal symptoms - I definitely need my rectal meds. I accidentally skipped my Canasa the other day and the next day I had increased urgency, frequency, and mucus. Won't be doing that again.
Posted 5/14/2017 12:12 AM (GMT 0)
"Have not had a stool test" then get a stool test for pathogenic causes to your symptoms like c. diff. Ask your gasteroenterologist. If you had c diff then it wouldn't respond to canasa at all.
Posted 5/14/2017 12:17 AM (GMT 0)
Thanks again for your response. I too took a little longer to respond the to prednisone in the first place, but then I seemed to get better practically over night. I'm really hoping the taper was just a bit too fast. I had only stopped seeing blood for about a week at the time of the regression.

It's also helpful to know that you don't see much of a difference with your rectal symptoms with the oral mesalamine. That seems to shed some light on my original question.

Also- just wondering, is there a reason you're no longer using the rowasa? I'm just curious as I've been using them nightly. And are you having success with the vit e supps?
Posted 5/14/2017 12:27 AM (GMT 0)
I'm still using rowasa nightly.
Posted 5/14/2017 3:15 AM (GMT 0)
The reason my doctor switched me from the Rowasa enemas to Canasa was because I had an internal hemorrhoid flare up (thanks to a weird time period where my body was transitioning from diarrhea to solid stool, resulting in a very irritating peanut butter-consistency stool - which is killer for my hemorrhoids) and inserting the rough plastic applicator of the enema bottle was extremely painful and actually cutting my hemmies sad The hemmie flare up is mostly calmed down now, but the reason I haven't gone back to Rowasa is that I was never able to hold them very long. I would wake up in the middle of the night to pass the enema. That said, I have an open packet of Rowasa and I've been trying to do an enema 1 x a week since I'm still having bothersome rectal symptoms and no sense in them going to waste. The Canasa is just SO much easier to use.

I use the Vitamin E supps for hemorrhoids, specifically for post-BM irritation of hemorrhoids. I was using the Canasa at night but needed something for after morning BMs. My doc said I couldn't use my usual Rx supps (hydrocortisone) so I use the Vitamin E (non-medicated) supps to sooth hemmie irritation post-BM.
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