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Uceris - budesonide for UC

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Ulcerative Colitis
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Little Buddy
Regular Member
Joined : Jun 2010
Posts : 52
Posted 2/18/2013 5:27 PM (GMT -8)
Has anyone tried this new formulation of topical steroids? I think it is just coming out in the US now.

http://www.news-medical.net/news/20130214/Santarus-launches-UCERIS-for-induction-of-remission-in-patients-with-ulcerative-colitis.aspx

I am hoping to try it soon - i think its a pretty standard RX for Crohns with a different coating and maybe will mean aboiding pred in the future?

i was doing pretty well until starting fiber supplements this year. First Metamucil, then citrucel; both have caused miserable pain and blood. I keep thinking it'll get better, and that my MD said to take fiber, but I'm feeling pretty crappy and am ready to abandon the fiber. Any thoughts?
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 2/18/2013 5:48 PM (GMT -8)
If the fiber is causing pain you should absolutely quit it. Try again when you're feeling better.
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5664
Posted 2/18/2013 6:39 PM (GMT -8)
is uceris just another entocort? I took that with horrible consequences- tons of diarrhea and cramping. i'd be skeptical to take something that is so similar.
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canadamom
Regular Member
Joined : Oct 2012
Posts : 86
Posted 2/18/2013 7:31 PM (GMT -8)
If you start having bad cramps and pain does in mean the UC is active again?
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Little Buddy
Regular Member
Joined : Jun 2010
Posts : 52
Posted 2/18/2013 8:55 PM (GMT -8)
I suppose that is the other possibility, that its not the fiber but a flare. I guess I'll find out when I stop the pills. The awful pain and blood has been very different this time, happens only while I'm going and no burning feeling. I guess I was hoping my body would adjust after a while and I would be able to tolerate it. Boooo.
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Madcat25
Veteran Member
Joined : Oct 2012
Posts : 1116
Posted 2/18/2013 10:11 PM (GMT -8)
If its not working its not working. Stop it I say.

As for Uceris... Wanna try but its prob not in Canada yet
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gabrielle79
Regular Member
Joined : Apr 2008
Posts : 29
Posted 2/19/2013 4:42 AM (GMT -8)
I hope uceris isn't like entocort. I am currently taking entocort now and I don't have good results from it. It is actually making me feel worse. . .  :(
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4545
Posted 2/19/2013 9:05 AM (GMT -8)
well it is chemically the same as Entocort. Just has an enteric time release coating.
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jac91584
Regular Member
Joined : Oct 2011
Posts : 379
Posted 2/19/2013 5:11 PM (GMT -8)
i'm having uceris shipped to me via express scripts. recently had another flare and 20mg of prednisone has not worked and today my lovely GI said to up it to 30mg and if it gets worse, go to the ER (suffice to say my patience with him is wearing thin.

my understanding is that using entocort for UC would be futile since it won't reach the left side and lower parts of the large colon. It is however effective for crohns. i'm hoping that i can go on the uceris as soon as I can and start a prednisone taper.
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/19/2013 10:43 PM (GMT -8)
Little Buddy, how long have you been taking the fiber supplements for?

It can take time for the system to adjust to fiber (even for healthy people)...you also have to be careful with the Citrucel and other powdered forms of fiber supplements since many (if not all) contain sugar substitutes which can be the culprit in causing added discomfort that won't end due to us being particularly sensitive to sugar substitutes which is why I use the pill form of fiber supplements....it still took my system 3 months to adjust before things became much more tolerable (it varies for each person as to when it finally kicks in) once I adjust to it, no more excessive gas, bloating all gone, formed bm's and less frequency too. I've also been able to tolerate eating all fiberous foods as well with no more issues from them.

Key with fiber supplements is to drink plenty of water with it, start out with a small amount and only increase (very slowly) if you find it necessary.

I also started taking fiber supplements during a horrific flare with my crohn's colitis, as directed by my GI, best GI advice I've ever gotten to date (in 22 yrs, sad eh) out of 4 GI's.

Probiotics can be pretty beneficial for us as well, so long as you're taking the right kind and it's good quality (from my experience, refrigerated ones tend to be the best, and no less than 10 billion cultures).
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Madcat25
Veteran Member
Joined : Oct 2012
Posts : 1116
Posted 2/20/2013 7:08 AM (GMT -8)
If 30 doesn't work then ER.... he's crazy. Also heard that pred and budes shouldn't be taken together, since they are similar or something.
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Carlie
Regular Member
Joined : Nov 2011
Posts : 412
Posted 2/20/2013 7:20 AM (GMT -8)
I was prescribed prednisone, entocort, and hydrocort enema's all at the same time. They all have different delivery systems. I have successfully weaned off of all 3. (It took 2 tries of pred)

Carlie
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flgirl10
Regular Member
Joined : Feb 2013
Posts : 79
Posted 2/20/2013 10:15 AM (GMT -8)
I started flaring badly again this past month and my GI doctor told me to take pred again. But after my previous stints with pred (crazy mood swings, puffy face, severe joint pain, and lack of sleep), I'd def prefer not to do that again.
Little Buddy, my doctor also suggested I try Uceris but said that I might have no remission from it or it would only delay my remission. I'm on the fence....
Does anyone know how long Uceris has been on the market? or anyone who has had success with it?
I can't continue in this flare but don't know if prednisone is worth it either.

21 yo female
Dx: April 2011 (suffered symptoms/flare 6 months before)
Flares: until diagnosed, august 2011-april 2012, currently
Rx: Lialda (3 pills evry morning), tumeric, daily vitamin, want to start probiotics but nervous, change in diet
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jac91584
Regular Member
Joined : Oct 2011
Posts : 379
Posted 2/20/2013 10:30 AM (GMT -8)
lauren, sorry to hear about your situation. believe me, i know exactly what you're going through. sadly i've found that prednisone seems to be the only thing that effective in getting my flares to calm down. but I'm a believer in trying a variety of approaches to try and find a balance in what works.

Here's what I can say about Uceris. Uceris is brand new to the market, approved in mid january by the fda and currently they are building up distribution. my order from express scripts was supposed to be shipped yesterday but has been delayed until the 22nd. Not sure why your doctor didn't mention that it can also get you into remission, alot of people with chron's had great success with entocort, and this is basically the same thing but gets delivered to the large colon and lower.

it's typically an 8 week dosage, but additional 8 week packs can be prescribed. my GI plans on tapering prednisone and then eventually starting the uceris to get me completely off the prednisone. but honestly i think i am going to push to get on uceris asap and start a taper of prednisone when things start to get better. i'll also be pushing for cortifoam as the urgency i am going through indicates severe inflammation lower down. (sometimes it sucks knowing more than my GI, so i'm considering a top GI out of Mt. Sinai if I can't get this under control soon)

i should note that in addition to 30mg prednisone I am also on 2x3 a day of asacol hd, started the paleo diet 2 weeks ago, started slippery elm root and I take vsl#3. I started juicing also, as the fiber content is greatly reduced, i'm currently juicing carrot, apple, napa cabbage as I've read many studies indicating benefits from cabbage.
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flgirl10
Regular Member
Joined : Feb 2013
Posts : 79
Posted 2/20/2013 10:57 AM (GMT -8)
Jac91584,

Glad to hear someone is going through the same thing, it makes me feel a lot better! Thank you for your information as well since I'm only learning about this new drug today.

Previously Prednisone has been the only thing to put me in remission as well, which I am thankful for. But the remission has only lasted a few months every time I've taken pred. My GI told me (or rather his nurse reiterated his message to me, which I hate not speaking to the doctor directly) that Uceris may not put me in remission for some reason? I have no idea why. He basically sounded like he was pushing prednisone and that was my only option. I sometimes I feel I know more than my GI too, especially because I live with the disease. I'm probably going to make an appointment to go see him soon, so I can speak to him directly and not his nurse.

I feel a little hesitant to take something having only been on the market for such a short amount of time, but as my mom says we have to be aggressive in treatment! haha. I'll probably go the route of the Uceris too and see what happens, hopefully with less side effects than the pred. Hopefully the uceris helps you out too.
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Indycat23
Veteran Member
Joined : Apr 2011
Posts : 661
Posted 2/20/2013 11:46 AM (GMT -8)
I'm surprised they launched the product this quickly. I didn't think it would be available until late March.


For those interested, they do have patient assistance program but it only covers up to $100. If you have a high deductible health plan, it's going to be really costly.

http://www.uceris.com/
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/20/2013 12:06 PM (GMT -8)
lauren, pred used to be my friend...until it stopped working all together...it was the only oral RX I could take for my IBD as I'm either allergic or non-responsive to all the other ones.
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Little Buddy
Regular Member
Joined : Jun 2010
Posts : 52
Posted 2/21/2013 12:21 PM (GMT -8)
Thanks for all of the replies, I love knowing I can come to this forum when I have questions or angst. It feels great to have such support and dialogue.

PB4, I had been taking fiber since the new year (so 7 weeks); 3 on Metamucil 4 on Citrucel. 2 days after stopping I am already feeling a lot better; less agony and blood. I don't think I could have made it to 3 months to adjust - I had already changed my schedule to wake up earlier and avoid agony at/on the way to work. If I'm honest with myself it had all of the markers of a flare - pain, blood, urgency, multiple BMs, etc. I'm hoping to continue feeling better now that I'm off it, but I will talk to my MD about some other kind (Benefiber maybe, or Psyllium seed powder) that could be more gentle. What kind do you use? I take Align daily, to answer your probiotic point.

Everyone else, please keep us updated about progress with Uceris; I will get an RX in 2 weeks (I hope).
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/21/2013 1:47 PM (GMT -8)
Starting with too much fiber will be a huge issue (even for a healthy person) you have to start with a small amount and only increase it (slowly) if necessary...I'm still only taking one Prodium fiber tablet for close to 10 yrs now.

I use ProBio TX-11 probiotic from Sangsters health food store with success. I don't use fiber powders because they generally contain artificial sweeteners which tend to do negative things to us...fiber is your friend if you use the right kind and ease into it...you can even take a fiber pill one day and then avoid it the next day and then the 3rd day take another...weaning yourself on to it until you're taking it daily. It will aid with D.
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jac91584
Regular Member
Joined : Oct 2011
Posts : 379
Posted 2/21/2013 1:48 PM (GMT -8)
just got home from my LOVELY gi. we think i'm reacting badly to too much asacol hd, so we're dropping it from 6 daily to 4. i talked him into letting me try proctofoam because I know my inflammation and urgency issues may get much better with it.

apparently he's not letting me go on uceris until we take down quite a bit of prednisone, i'm sure i'll put up an argument once i get it though.

he let me know that since the 12th of february i have lost 10 pounds (even while on prednisone). he didn't seem alarmed by it, and i'm not either since I'm doing paleo and juicing. (i'm around 6' 172, so it's not like I am wasting away or anything)
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Little Buddy
Regular Member
Joined : Jun 2010
Posts : 52
Posted 3/12/2013 4:16 PM (GMT -8)
Back from the GI today. When I told him about fiber causing me issues (which have continued to my dismay) he asked, why are you taking fiber? Because you suggested it! He said to stop and gave me an RX and some samples for uceris. I will keep you updated on how it goes.

I am feeling really down about the whole thing, I guess this is my first big flare since my diagnosis (not that I had no symptoms since then, I had daily issues but this is much worse). It is seriously traumatizing to have to sit in the waiting room of the GI, which is a place I never wanted to be, and script out what I want to say about my butt problems. Not nearly as traumatizing as sprinting to the bathroom and being faced with agony and blood many times a day, but still.

I guess the search continues for a little colon peace. Adding rowasa, upping lialda and hitting Uceris.
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Heather9
New Member
Joined : Apr 2013
Posts : 1
Posted 4/8/2013 7:24 PM (GMT -8)
Little Buddy.... Have you had any luck with the Uceris? I started it two weeks ago and have not seen any improvement. Just wondering if its not working OR if I have just not given it enough time.

I'm new to this group. In the midst of a flare up since September. Have done two rounds of pred, starting at 40 mg, that helped some. A round of entocort, with no help ( it has worked in the past). And doing hydrocortisone enema but not as consistently as I should. I'm starting to think I will never be "normal" again. In addition, I'm not diagnosed with UC but a rare disease called eosinophilic colitis. Acts like UC. Anyway, if anyone has any suggestions I am open. At my whits end and ready to go anywhere to get help, just don't know where.
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Little Buddy
Regular Member
Joined : Jun 2010
Posts : 52
Posted 4/8/2013 8:24 PM (GMT -8)
I'm only on day 7 of Uceris, my RX took forever to get approved and processed. I can't tell if there is an improvement - things are getting better, but I've also been loading up on spinach, resistant starches and Rowasa starting at the same time. I have some major proctitis bleeding, which continues to be traumatic. Things are much more formed this week, but I'm still having many more BMs than normal. Pain is definitely going down, urgency varies. I drank some wine over the weekend, and that caused today to suck and feel like a setback. Now, on the plus side for Uceris, I haven't noticed a single side effect.

I'm sorry you are having such a hard time, we've all been there. Don't give up, you will find something to give you relief. I am a believer in olive oil daily, it doesn't make my issues go away, but I think it lubricates everything and dampens the inflammation a little.
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Adventureuc
Regular Member
Joined : Apr 2013
Posts : 349
Posted 4/10/2013 6:07 AM (GMT -8)
Just started Uceris today. Anyone else on this having a reduction of symptoms? My dr. Prescribed 3 pills a day and since my insurance doesn't cover it, that's 3k a month. On some free samples right now after some shameless begging. Anyone having swelling or insomnia? That's always been my problem with Pred.
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jac91584
Regular Member
Joined : Oct 2011
Posts : 379
Posted 4/10/2013 6:12 AM (GMT -8)

Adventureuc said...
Just started Uceris today. Anyone else on this having a reduction of symptoms? My dr. Prescribed 3 pills a day and since my insurance doesn't cover it, that's 3k a month. On some free samples right now after some shameless begging. Anyone having swelling or insomnia? That's always been my problem with Pred.

standard dose is 1 9mg uceris per day. i don't know what your doctor is doing but he might want to read up on the drug a bit more.

also a 90 day supply (90 pills) of uceris cost my insurance 3400, so that sounds about right.

also this is a not nearly as systemic as prednisone, you shouldn't have nearly the same side effects as prednsione, then again if you triple dose, I can't be certain
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