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Uceris - Anyone Try It

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Ulcerative Colitis
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Posted 5/15/2013 7:44 PM (GMT 0)
Did you get diabetes from taking the pred? Uceris is not a systemic steroid like prednisone is so hopefully it won't bother your diabetes.
Posted 5/15/2013 8:05 PM (GMT 0)
No. i did not become diabetic from the Pred. I actually was diagnosed with type 2 before the UC in 1998. I am glad it is going to stay localized because Pred is so messed up. It does work, but as we all know its hell to go through. I had to take a loooooong break from my activities as a muscian and video maker. Ugh. I hope for the best.
Posted 5/16/2013 8:09 AM (GMT 0)
I still have a week left. Mucus came back but thankfully no blood.
Posted 5/20/2013 10:45 PM (GMT 0)
I decided to lay it off today. I'm two days of the 8 week mark. I will stock up on it while I still have insurance because I refuse to use pred ever again. Mucus went away again. I'm on Imuran and Apriso to maintain what I hope is remission. Wish me luck.
Posted 5/22/2013 12:24 PM (GMT 0)
Quick followup. 17 yr. old daughter on Uceris 2 weeks and all is good so far. Out of the really bad flare. So far no side effects that we can tell. There have been a few moments of what we questioned was steroid rage, but could have been just hormonal. Appetite has also been very strong, so we are watching that. We are able to start dealing with the Lyme now. In closing, if the side effects stay low and there are no issues relating to stopping or taper Uceris seems like a very good option for us.
Posted 5/28/2013 1:21 AM (GMT 0)
What a difference a few days can make. Started daughter on her Lyme treatment which is Doxycyclone. Not doing well. Blood and mucus increase. Afraid that the Uceris may not hold. We were worried that the Doxy could cause problems. Stopped it today so hoping that we can go back to where we were.
Posted 5/30/2013 2:27 AM (GMT 0)
I have moderate Colitis and have been on Uceris for a couple of weeks. It has worked well with no significant side effects. Uceris, coupled with Asacol HD has stopped my current flare.

The cost is significant. Without insurance, I would still take my chances with Prednisone as long as you could limit it to one or two tapered doses per year.

Something no one has mentioned, abstain from any artificial sweeteners. I was a heavy diet soda drinker and know that it was complicating my condition. (There was a Canadian medical study that documenting the problems with Sucralose.) I began abstaining from artificial sweeteners two years ago and enjoyed a year and a half of remission. Give it a month and see if it has an effect on your condition.
Posted 5/31/2013 8:59 AM (GMT 0)
Hi Everyone,
I'm new to this forum and new to ulcerative colitis.

I've been on it for a week now, and although it seems like it's making me go more .. my stool has formed up. hopefully in another week or so things will normalize for me. I'm taking Lialda on top of this. Not sure if it's direct cause of stools firming up, but urgency has gone up.

Is this normal for everyone? is there period of cramping and pain with the urgency, before stools normalize?

I'm fortunately to have a good Insurance, and pay 5 dollar Co-Pay for this medicine. hope this is the one.
Posted 6/3/2013 2:42 AM (GMT 0)
This is the 2nd day that I have been on Uceris and I can definitely see improvements; I can hold an enema now (so the inflammation is going down); but I still have urgency and blood. Frequency is decreasing too.

Right now I am Humira 40mgs weekly, steroid enemas and Uceris 9mgs once a day. When I was on only humira once a week and the steroid enemas my symptoms were getting progressively worse, almost checked myself into the hospital.

My co-pay for the Uceris for the month is $250 but if it keeps me out of the hospital then it is well worth it.
Posted 6/3/2013 4:15 AM (GMT 0)
Good luck, Keith! I'm sorry to read that you're in a severe flare again. Are you still with Dr. S.? / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/3/2013 11:00 AM (GMT 0)
Uceris is 10 - 20% systemically available, depending on liver function, so there may be side effects. I have been on budesonide (same systemic availability) for three months, and I have swollen knees, mild moon face, and I'm moody in the morning after I take my pills.

"The medication is then absorbed into the body and subject to a high first-pass metabolism (80-90%), thereby minimizing side effects."

They've also update their literature to include tapering othe steroids when beginning Uceris.

"Transferring patients from systemic corticosteroids: Risk of impaired adrenal function when transferring from oral steroids with high systemic effects. Taper patients slowly from systemic corticosteroids if transferring to UCERIS."

I wish I would have been tapered from prednisone to budesonide. That was a very difficult week :(
Posted 6/3/2013 12:56 PM (GMT 0)

Old Hat said...
Good luck, Keith! I'm sorry to read that you're in a severe flare again. Are you still with Dr. S.? / Old Hat

Old Hat,

Yes, I am still using him as my GI-IBD Specialist (he's 2 hours from where I live) and a local GI for the regular stuff. He is wonderful, I don't think I could have handled the last 10 years without him as my GI. Perfect example: I have BCBS for my insurance and I know that it is going to be a fight with them to get the increase approved for the humira script. I don't have any humira pens right now and I'll probably miss a dosage this week fighting with them. He actually has a couple of sample pens of Humira that he is giving me to hold me over until the insurance gets approved. My local GI does not have samples of humira.

I'm trying to make it until October for surgery, I'm ready to have the J-pouch and to move on with my life. I'm going to have get the 2-step surgery (October and January) because the surgeon (Dr. Harris) who did the 1-step Laproscopic J-pouch at Mount Sinai has moved to the Hackensack Medical Center. I'd rather have it done at Mount Sinai because I have been their a few times before and I am very comfortable with their nurses, facilities and Dr. S is there.

I am actually feeling better today then I did yesterday; I drank a cup of coffee this morning and didn't have to run to the bath room. I think the Uceris is working (fingers crossed).

Post Edited (ks1905) : 6/3/2013 6:59:44 AM (GMT-6)

Posted 6/3/2013 12:59 PM (GMT 0)

Tornado6 said...

I wish I would have been tapered from prednisone to budesonide. That was a very difficult week :(

I had Prednisone/Steroid withdrawal once, it was 10x's worse than any UC flare that I've ever experienced.
Posted 6/4/2013 5:39 AM (GMT 0)
Thanks for updating me, Keith. Before spotting your latest posts I was hoping that since you've been away from this forum for a while it meant that your maintenance meds were working. Bummer that the laparoscopy expert moved to NJ. I've had an internist + gastro relocate from Mt. Sinai over the past decade, also heard that another gut surgeon left there for Cornell, but he doesn't take insurance so several IBDers commented to me that his switch doesn't really matter 'cause few patients can afford him! (Most UCers posting here are still getting the 2-step surgery, it seems.) You're right to stay where you feel well-attended and comfortable with the IBD gastro & nurses. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/4/2013 11:01 AM (GMT 0)
Day 13 on Uceris:

I'm still paranoid about still having to go while going places, but it has taken away about 70 percent of my urgency. about 5 days in I was saying in the other thread that it has firm things up, but I'm going more. Right now, (might still be too early but ..) It seems to have decrease my need to go, and given me gas! the good kind! not diarrhea! hopefully in another week, or two .. I'll achieve remission. I've also started the Spinach and Sunbutter diet a couple days ago also. Hopefully its the combination that's working.
Posted 6/5/2013 3:33 AM (GMT 0)
After 30 years of UC, IBS, Crohn's, or what ever the latest name is, I'm trying Uceris for the first time. Been down the normal routes with prescriptions hope this works. The colon restriction is down to pencil size and hurts like mad when stool passes. This is after 2 resections. If anyone is considering surgery this is my experiences. First resection was 14 years ago, went awfully wrong after 1 year. Later found out the DR. didn't re-pack the intestines correctly, which took another emergency surgery to fix. After that the next 10 years I experienced absolutely the best time of my life with no pain and no symptoms. A few years ago it came back and now it's the worst it's been since the surgery. Now 45 years old and can't take the intense pain daily, may have to find a real surgeon this time!
Posted 6/10/2013 7:10 AM (GMT 0)
Is it true that Uceris is better for left sided colitis - ie proctitis. My GI said these types of patients showed better response I believe. Also - do you have to taper on Uceris? Some are saying no on this thread but some are saying there is some systematic portion in the Uceris so I would think you may have to taper? I'm confused on this.
Posted 6/12/2013 4:20 PM (GMT 0)
Day 13 on Uceris and I am still going about 12 times a day. Most of these times I see blood and there is urgency. I need to call my doc and tell him how I'm doing, but I'm concerned. He'll want to put me on Predisone most likely and I really, really don't want to go there. Any advice?
Posted 6/12/2013 4:34 PM (GMT 0)
Uceris does not need to be tapered. However, it is my opinion that it might work better if instead of just quitting cold turkey after 8 weeks maybe you could "taper" down to every other day, every third day, once a week. I would only do this though if you have had a major reduction in symptoms or remission. If the Uceris has not helped then you might just as well get off and think of another plan.
Posted 6/19/2013 7:58 PM (GMT 0)
Update on daughter and Uceris. Things not going great. Approx week 6-7. Went really well at first. Took her out of a major flare. Then about 2 weeks ago she started on the downward road. Watery stool. Biggest issue is sudden incontinence. She has had 4 incidences so far, one being at her prom. Devastating for a 17 year old. This killed me, actually worse then anything that has happened so far. I felt so bad for her. Went to GI doctor yesterday and her blood work is actually showing improvement in all areas including inflammation. Thinks inflammation is now localized to the very end of the colon, but doesnt want to do another colonoscopy. Totally puzzled as to what can be causing this. Anyone having these issues since starting Uceris?
Posted 6/20/2013 3:10 AM (GMT 0)
I stopped using the steroid ememas after the first week of using Uceris... Big mistake, urgency, blood and D came back. I started using the ememas again and things seem to be improving the last few days. I'm guessing that the Uceris doesn't treat the rectum very well but it does a better job further up in the colon where the enemas don't reach.
Posted 6/29/2013 6:15 PM (GMT 0)
Hi, I started Uceris yesterday after colonoscopy showed pancolitis. woohoo. I was diagnosed with UC last year May 2012 and have not stopped flaring since. diarrhea, bleeding almost every time, going three times every night (haven't slept through the night in a year). I go about 10 times a day total. I am 18 years old and just graduated high school. My GI doc, after seeing the severity of my UC at my colonoscopy, told me she didn't know how I even graduated at all. needless to say, I'm sick and tired, but hesitant to go on hard core meds. (immune suppressants, biologics). Doc wants to put me on humira, but I asked to try Uceris before jumping into the pool of biologics.

Does anyone have pancolitis and has had success (or is having success) with Uceris? even if I could stop bleeding that would be a milestone.

praying for all of us plagued by this disease. The Lord still works healing miracles.

currently on no medication except for iron supplements.

tried mesalamine, Canasa, Cortifoam, etc. didn't help a bit.

30mg of prednisone helped until I reached 15mg then symptoms came back.

Posted 6/30/2013 2:45 AM (GMT 0)
i tried Uceris for about 4-5 weeks, and stopped to get on prednisone. Maybe i'll use uceris again, after i'm tapered off Prednisone.
Posted 6/30/2013 3:20 AM (GMT 0)
Just finished two months of Uceris. Dr put me on two more. This is no cure she said just buying me time while I decide what autoimmune suppressents I should go on. My husband suggested diet change so Im eliminating all sugar and wheat to see if there is any improvement. Bought two weeks worth of the meds. cost almost 600 dollars. It does work for me though.
Posted 6/30/2013 11:39 AM (GMT 0)

Adventureuc said...
Just finished two months of Uceris. Dr put me on two more. This is no cure she said just buying me time while I decide what autoimmune suppressents I should go on. My husband suggested diet change so Im eliminating all sugar and wheat to see if there is any improvement. Bought two weeks worth of the meds. cost almost 600 dollars. It does work for me though.

At the Uceris website they have a coupon for co-pay assistance for up-to $100 per month. Uceris is crazy expensive for a stupid steroid. It's close in pricing to a biological medicine, I don't know how they can justify the cost.
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