Posted 10/31/2013 8:11 AM (GMT -6)
I've been flaring for 5 weeks. It got progressively worse so I had a flex sig 2 weeks ago and there was inflammation all the way up. I was prescribed Uceris which I started 13 days ago. It was working slowly but I was definitely improving.
I added every-other-night hydrocortisone enemas for the past week because of rectal spasm-y feelings. They are helping.
So, 4 days ago, I was feeling better and really hungry (prob. side effect of the Uceris) and I ate something very, very stupid for dinner. Then I ate some stupid things for breakfast and lunch the next morning. Bad move: I got sick the next 2 days - extreme pain, nausea, retching (for the first time in this flare), extreme fatigue, blood, urgency, etc. I was worse than before I started the Uceris.
I didn't know if it was because of what I ate, or if the Uceris was no longer working, so I called my doctor and he prescribed 40 MG Pred. to add to the Uceris and enemas. I asked if we could try a steroid burst instead, because of my past issues with Pred., and he said yes.
Fast forward to last evening when I miraculously felt fine. No pain, nausea, blood only on toilet paper, etc. It was so sudden and extreme, I have to believe the food made me sick. Once it was out of me, I was better than the day before the flare up (probably because I added the enemas).
So here's the question.
Even though I'm better, should I still add the steroid burst with oral Pred?
My thinking is adding the burst is like the "treat both ends" theory (which I now completely ascribe to). This would be "treat all ways": Uceris for topical treatment in colon, enema for topical treatment at the end, and oral Pred. for whatever the Uceris isn't helping and also to fight systemic inflammation.
I'm also wondering if using both Pred. and Budesonide is an advantage because they are different steroids and might help in slightly different ways. Or do all steroids act the same in our bodies?
I'm terrified of Pred because it took me 7 months to taper from 40 MG last time and I had many side effects. But a burst shouldn't require a drawn-out taper or produce side effects. My GI prescribed one week of 60 MG Pred., no taper, but I'd probably do a seven-day 40 MG, 30 MG, 20 MG, 10 MG, 10 MG, 5 MG, 5 MG, none, taper.
But, on the other hand, maybe a burst will have side effects because I'm already taking the Uceris (supposed to have a systemic effect of 10 MG) and the enemas (100 mg, not sure of systemic effect) ? Will the addition of oral Pred push me over the edge to moon face, weight gain, and dependency? Is it worth the risk?
I've been taking Uceris for 13 days.
Been taking 100 mg hydrocortisone enemas alternating nights; will now take them every night.
Should I add a 1 week steroid burst?
If yes, should I do the 60 MG/7 days or a slow taper over 7 days?
Advice is appreciated! I have no problem making up my own mind, just want other perspectives from the folks on this board who know a LOT about treating UC.