Uceris

I've been on oral Uceris since March 2015. When I started Uceris I felt several days of extreme bloating and then it put me into remission almost instantaneously. I've read on numerous sites that Uceris should only be used for just that and not as a maintenance drug. The Uceris was great for a few months but then I started noticing that when I would be standing for long periods of time my legs would start to hurt to the point where I would have to crouch down to relieve some of the pain. After standing it would become difficult to go up steps almost as if my knees were full of fluid (no evidence of this) and my legs weighted 100 lbs. At first I thought that I sprained something or it was sciatic pain. So several months ago I started weaning off and 2 weeks ago I completely stopped taking it. Im still feeling pain when standing still but its been more tolerable. Going to see my gi in two weeks but wondering if anyone else has taken Uceris and experienced similar issues or did I take this medicine for too long?

I never had pain from Uceris. I believe you're the first person i've seen mention this as a side effect of Uceris. I wonder if the pain is unrelated. Uceris isn't really for maintenance of UC. it is for helping to achieve remission. The problem with Uceris is that it's a steroid. It's tolerable compared to prednisone, because the side effects are less apparent, but it is still a steroid... Steroids work well while you're on them, when you stop, you're back at square one - unless you find another medication to use for maintenance.

I have seen mixed results with Uceris personally. When I was in a mild flare up, it worked great. I stopped Uceris and of course my symptoms came back. I tried Uceris again and no luck controlling more moderate symptoms. At that point, it was pred or suffer with moderate/severe UC symptoms.

I would advise you against using uceris as a long term maintenance medication. 10 percent of that medication is systematic and over the longterm things like osteoporosis, glaucoma and or type ii diabetes are very likely. Other uc medications or surgery are always preferable to prolonged steroid use.

What medications and treatments have you tried? What are you taking? Perhaps we might have some others to suggest...

We'll see in 2 weeks what he suggest he puts me on. When I was on the Lialda it was 2 pills 3x/day and it just became too much. The Uceris was a godsend, but like so many other people suggest its not meant for maintenance. The difference between Entocort and Uceris is the coating because the pH changes in differnent parts of the intestines, Uceris releases the budesonide throughout the colon, while Entocort release in terminal ileum and ascending colon.

Yes, only Uceris. Stopped taking it ~3 weeks ago. Prior to that was on Lialda 2 3x/day and Canasa suppositories. Kept flare ups under control but never full remission.

I've seen the same GI for over 20 years and he's been in practice for 50+ years. He's published in many areas including UC. Have never tried any of those medications mentioned, never had an allergic reaction, he switched me from the Lialda to the Uceris after my last colonoscopy.

Post Edited (reap76) : 4/18/2016 11:05:26 AM (GMT-6)

Thanks. I definitely do not plan on staying on the Uceris. Its been about 3 weeks since I took any and dont plan on going back. Not to mention the exhaustion and pain for the first two weeks.

I was on Uceris for 2 years and never had a side effect. I flared and my Gi put me on Humira, it was a nightmare!! Going back to Uceris as soon as I am through with Pred taper. Sorry for your experience with Uceris. I hope you can find relief.

I was on Uceris recently for 8 weeks.

The only real side effect I had was a bad taste in my mouth, which turned into thrush (and this at a very stressful week in my life.) I found that my face flushed a little more easily when I was overheated.... but nothing else beside those things.

I had some inflammation, but only mild symptoms (so I was not aware there was significant inflammation!) and the Uceris seemed to take care of it - my frequency improved from "not too bad" to "really good." (4-5 times/day to 2 times/day average.)

Good luck to you!