Uceris is the bomb

So it's been just about 1 week since I went on Uceris, & I'm loving it! I haven't had so few BM's, & so little urgency, in years. Also, no blood at all- not even the telltale pink on the TP. Well, maybe a little, but it's gone from every single time I use the bathroom to maybe 1x a day. I have no idea what will happen after the 8 weeks is up, & no clue what it looks like clinically. I did have some seriously nasty nauseau & headaches the first 2-3 days, but those have disappeared. It's like an enema administered thru your mouth... ha! My GI described it as a topical steroid for your colon. Watch out, Quincy... this may put you out of business! Kidding....

That's so great!

Great news! I'm on Day 5. Still dealing w/ the nausea and headaches. I am using it to get off the pred (I'm at 7.5 pred now).

I asked my GI what happens after 8 weeks. He said I could continue to take it if it worked. Did your doc saying anything about getting past 8 weeks?? Just curious.

Maintenance drug? After 8 weeks? I am about to get surgery but will also add that uceris is the bomb for me too. But I have been repeatedly told it is just a flare drug. I have not noticed *any* systemic affects though whatsoever - not evenn the slightest face puffiness, insomnia- or other symptoms- for starters. If I could use it forever I really would cancel surgery... Alas, so far it is the only non pred drug (or therapy) that effectively gives me controlled remission, so if it is not a maintenance drug it is worthless to me- other than getting me off all pred before surgery, which is something, I guess.

For those of you who do reasonably well with maintenance drugs though, uceris might (IMO) allow you to nuke multiple flares a year with abandon, forever, because it seems to knock mine out in just a week or so and is so non-systemic. In other words, a month or two use kf uceris a year forever is surely safe- but that's just my wild guess. If someone has any indication that maybe it is safe for use as continuous maintenance, get me the memo and I will cancel surgery. B

Post Edited (Probiotic) : 3/24/2013 4:18:56 PM (GMT-6)

what exactly is Uceris?

Even though I haven't noticed any side effects, I believe technically it is not entirely non systemic. I have no plans to cancel my surgery because I basically know I am back to square one when I stop the stuff- can take it a week or a year, but as soon as I stop, pain starts increasing again and if I give it enough time I will be in a flare again. Plus, I can still feel inflammation - just nit nearly as much. So for me it wouldn't solve the problem of neverending uncontrolled Pancolitis and the associated risks.. it merely dampens it enough to allow a fairly normal life while on the drug. But for those of you who just need need flare stoppers to buy you time fir your maintenance drugs to drag you back in, and that wont give you any noticeable side effects, this stuff is the bomb.

Post Edited (Probiotic) : 3/24/2013 4:40:13 PM (GMT-6)

Good luck, Eva! You sure deserve a major break ... Definitely keep us posted. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

No. Mine is trying right now since I'm having so much trouble with budesonide enemas, but the insurance is fighting her.

Well, there is no "tapering" off UCeris. They only make it in a 9 mg full dose pill, and because it is enterically coated , it can't be broken up. So it is used for a while and then stopped cold turkey. It's interesting that they say it can't be used for maintenance, owing to some systemic effect, in light of that fact.

Maybe you could "taper" it by taking it every second day, or dropping every third day, or something like that (take it 2 out of 3 days).

Yeah C_G_K good ideas on a poor man's taper strategy. I did, purely as a test of how much uceris is now helping, just skip it for 24 h and confirmed that I start sliding downhill right away withiut the drug. So right now it is all that stands between me and surgery- and i wonder if my GI will keeo rx'ing it to me?

I have lately been almost "living" on the HW ostomy board and now feel MUCH more comfy with surgery than ever before- those are some fantastic, helpful people over there (well, ditto at jpouch.org though I feel most at home on our "neighbor" HW site.). That said, I strongly would like to avoid surgery if humanly possible. I cancelled my upcoming surgery- on indefnite hold for now. If i have to use pred again I will call it quits, but surgery in a few weeks looks outof the question given my fantastic response to Uceris.

Have we seen the Vedolizumab stats? I'm kind of hoping (and praying!) uceris will work until Vedolizumab gets approved since I have failed everything else.

aguywithuc said...
It beats Asacol and placebo but is nowhere near what you would expect when thinking its like prednisone.

My GI doc refuses to write a script for it. I am going to switch to a gal with great references downtown.

ir.santarus.com/releasedetail.cfm?releaseid=709766

You can see the remission rates there.

That's the same taper strategy as enemas. You can't really do a half enema, so you slowly taper the frequency down from daily. Hopefully that approach will work for Uceris too.