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Uceris - Anyone Try It

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Ulcerative Colitis
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Posted 4/4/2013 12:09 AM (GMT 0)

StealthGuardian said...
Aguywithuc is correct. Quick tapers of prednisone just isn't safe. I don't believe that 10 mg every 3 days safe. I developed adrenal insufficiency even doing 5mg tapers but I guess everyone is different, and I was going through a lot of stress during that time.

As for the uceris - thanks for posting your progress with this new drug. I'm optimistic that it will work.

I just started Uceris a week ago after quite a bit of bleeding. I think it's working but very slowly. I do like the fact that it's non systemic, but given my response to steroids and adrenal issues, I really do believe that it's something that I cannot quit cold turkey. It would probably be a good idea to add a low dose of prednisone to the mix after weaning off.

My question is if it's okay to take it with LDN as well.

I was only a month on 60 mg pred. I think I should be ok.

I think Uceris can be taken with LDN.

pink, I haven't noticed any reflux on me.
Posted 4/4/2013 12:38 AM (GMT 0)
I think the key is how long you have been on pred. If you've been on an adrenal suppressing dose for months, I think stopping cold turkey could be a disaster, even if you're on Uceris. If it's only been weeks, then maybe cold turkey when switching to Uceris could be OK. I personally would rather be safe than sorry, at least until doctors have more experience with how the body reacts to Uceris.
Posted 4/4/2013 1:05 AM (GMT 0)
Lolo: Please give us regular updates. I'm extremely curious to see how long a remission can last once off Uceris.
Posted 4/4/2013 5:08 AM (GMT 0)
Six days on uceris and no relief whatsoever. Has anyone received benefit after this time?
Posted 4/4/2013 2:00 PM (GMT 0)
I'm just throwing these to the top so we get updates from people on Uceris. I have the script afraid to try, Pred made me moody, bloated, moon face and felt sick all the time. Humira was terrible in the worst way for me, so I'm a little gun shy on the trying something new.

Let us know how you are doing on uceris please and Thank you

Posted 4/4/2013 4:53 PM (GMT 0)
Go ahead and try it. My side effects from pred have been improving while I have less and less bm's and still doing well. I'm tapering pred and I'm on 20 mg right now.
Posted 4/5/2013 6:30 AM (GMT 0)
Been on Uceris 3 weeks (and Entocort 3 weeks before that). I found some relief at the beginning of starting Uceris. I had no blood and just D or soft stools and less urgency. However, about 3-4 days ago I started having blood/mucus again, a lot of cramping, and urgency. Basically I'm back to where I started before taking it. Anyone else not getting help from Uceris?
Posted 4/5/2013 10:27 AM (GMT 0)
lauren did you change your diet?
Posted 4/5/2013 2:24 PM (GMT 0)
Uceris update:

Still getting cramps / gas, but the bleeding has subsided after taking it for a week or so. Going 3-4 times in the morning.

I'm also taking 4.8g of lialda every day. Here's to hoping that it will bring me out of a long flare.

As far as side effects go, I'm getting a little insomnia.
Posted 4/5/2013 3:00 PM (GMT 0)
I agree with CGK's post- As a matter of fact I bet someone will eventually die due to shock because they switch from pred to uceris and then eventually go cold turkey off uceris, because of uceris failure to provide smaller doses on which to taper. I am having surgery soon and it is anyones guess what pred level I will need after surgery to deal with stopping uceris due to being colon-less, since uceris cant be absorbed once I lose the colon- my guess is about 10 mg pred but I will see if the docs have a clue. GI's seem to be clueless about uceris and some are ignorant enough to think that it is non-systemic. That said, it is clearly far less systemic than pred and for many, myself included, has a benefit equivalent to a fairly high dose of pred while having systemic effects of a fairly low dose eg about 10 mg in my opinion, judging by the amount of moonface (mild moonface, not noticable except by me and my wife i suspect).
Posted 4/5/2013 3:06 PM (GMT 0)
Probiotic, are you not making this systemic conclusion on your own? I just started taking Budesonide and was told to take 3 pills every morning for 3 weeks, then taper to 2 pills every morning for another 3 weeks, and then 1 pill every morning for 3 weeks. You are making the use of Uceris sound dire, and don't seem to have any basis only than your own anecdotal experience.
Posted 4/5/2013 4:39 PM (GMT 0)
Andrina,
I didn't change my diet in a way that would make my symptoms worse after having been on Uceris for 3 wks. I've cut out things I know irritate my UC and have been eating pretty plain things since my flare started at the beginning of February. I've also been taking people's advice from the forum about diet modifications.
I don't know why all of a sudden the Uceris isn't helping anymore. Today is actually a pretty bad day for my flare.
Posted 4/5/2013 4:42 PM (GMT 0)
Actually thinking about it, I did have a cold/sinus infection last week. Maybe that and stress from school just ticked off my UC again?
Posted 4/5/2013 7:34 PM (GMT 0)
So is Uceris something that one is supposed to stop cold turkey, with no taper? I get the impression there arent that many doses to move down to.

Im seeing my GI this afternoon and will ask about this, though I had poor results with hydrocort enemas (immediate relief, followed by no help, followed by getting very sick, likely due to slippery elm combined with kyodophilis probiotic). That was just like 9-10 days of hydrocort...

Never taken pred... (not since I was a kid for asthma). Have always doubted steroids but IM getting desperate and really frustrated.
Posted 4/7/2013 1:52 PM (GMT 0)
well there's not enough people so far that has convenienced me to try it. Side effects say, ability to lower your immune system but if it's not systematic why would it do this?
Posted 4/7/2013 1:53 PM (GMT 0)
Budesonide is basically Uceris, no?

If so: I've been told to take 3 pills per day for 3 weeks and then taper to 2 pills daily for another 3 weeks and then 1 pill for 3 weeks
Posted 4/7/2013 3:03 PM (GMT 0)
Since Uceris is, for the most part, nonsystemic there is no tapering.
Posted 4/7/2013 4:08 PM (GMT 0)
Why try it? B/c nothing else works and you don't want to have surgery. Well that is the reason I'm trying it.

therearemiracles said...
well there's not enough people so far that has convenienced me to try it. Side effects say, ability to lower your immune system but if it's not systematic why would it do this?

Posted 4/22/2013 7:59 PM (GMT 0)
I've been on Uceris since Friday, 04/19... I haven't seen any noticeable positive results...

I've been in a flare for a while. Daily, I take Lialda (maximum dosage) in the morning with breakfast and a mesalamine enema at night. I also use the hydrocortisone enemas when bleeding.

I'm still having urgency, stomach pains, gas and loose stools... An extended Prednisone taper ususally works for me but I was set to try Remicade but my GI informed me of Uceris so I figured I would give it a try... I'm going to give it a full week before notifying my GI, but I'm not optimistic at this point that it will work.
Posted 4/23/2013 12:55 AM (GMT 0)
J_Sunday,
I have been on Uceris for over a whole month and I have had no improvements. I noticed a few slight improvements the first week then nothing. I am also on the max dosage of Lialda and cortisone enemas every night for the past 8 days. I still have all of the same symptoms as you.
I actually stopped it friday by accident (forgot to call my doctor and have the script refilled oops) and have had no significant worsening, just the same.
Posted 4/23/2013 1:32 AM (GMT 0)
I've been on it for almost a month now and I'm very relieved. My bleeding has stopped so did the urgency. I still get diarrhea when I eat something bad but I know there is no inflammation behind it because it will be formed again right after. I think the combination of meds I'm on is doing the trick for me. I never want to go back to pred I will ask for Uceris first.
Posted 4/23/2013 2:06 AM (GMT 0)
Sometimes I wonder if the 5ASA's work against the Uceris or Entocort main ingredient.
Posted 4/23/2013 1:13 PM (GMT 0)
Any other updates on uceris?
Posted 4/23/2013 2:06 PM (GMT 0)
You need to give Uceris time to work. It can be give for 8 weeks or 16 weeks. Much better than starting Humira with cancer side effects don't you think?

Also, if you are dosing Uceris 3 times a day...you are overdosing! Or you have generic budesonide, which is nothing like Uceris but rather Entacort!

Uceris- one 9mg tablet a day
Entacort-three 3mg tablets a day
Posted 4/23/2013 5:53 PM (GMT 0)
I had my appointment with my GI today. He will actually follow-up with the manufacturer of Uceris to find out how to taper. I'll let you all know once he called me.
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