Uceris - Anyone Try It

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Paul A.
New Member


Date Joined Oct 2006
Total Posts : 17
   Posted 3/20/2013 2:32 PM (GMT -6)   
Anyone try Uceris yet?  It looks like it just became available within the last couple months. My doctor just gave me a prescription since I am starting to flare. This drug is prednisone but it has a coating that should disolve only in the colon which equals less side effects.

jac91584
Regular Member


Date Joined Oct 2011
Total Posts : 379
   Posted 3/20/2013 2:53 PM (GMT -6)   
it's not really prednisone, it's Budesonide with a special coating. yes it is a cortiocosteroid but it's more of a topical approach and isn't absorbed into the bloodstream nearly as much as prednisone (thus less side effects in theory). i have it but my GI won't let me take it until we get my prednisone levels down. some people around here have had success with it. good luck, hope it helps!
-Josh-
Currently On: Prednisone 60mg, Humira Once Weekly, VSL#3, Slippery Elm, Calcium, Librax
Failed Meds: Mesalamine (Asacol, Pentasa), Balsalazide Disodium, 6-MP, Bentyl
New Med Arrived: Uceris (waiting for doctor to let me start it)
Diet: Paleo (no grains or dairy)

Paul A.
New Member


Date Joined Oct 2006
Total Posts : 17
   Posted 3/20/2013 2:57 PM (GMT -6)   
Hey Josh,
 
Thanks for the info. I see that you use Slippery Elm. This always seems to help me when I start having flare symtoms. I just ordered a bag of the powder form.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2732
   Posted 3/20/2013 3:10 PM (GMT -6)   
I have been using it for a week... Definitely helps, and I can flatly say that I dont "feel" or see any change in systemic steroid effects- no face puffing, no stiffer joints, no worse vision, no insomnia etc. this on top if my tapering thru 5 mg pred.

pink1
Veteran Member


Date Joined Jul 2010
Total Posts : 780
   Posted 3/20/2013 3:19 PM (GMT -6)   
I just started today. Finishing up my pred taper at the same time (at 10mg).
Tried: Mtx, Imuran, Humira, Remicade, Cortenema, Cortifoam, Rowasa, etc, etc, etc
Currently on: Uceris, 10mg pred, 9 colazal/day, cortifoam, zegerid, vitamin D, multivitamin, bentyl as needed
As of last scope (1/7/13): Moderate to severe to 25cm

Paul A.
New Member


Date Joined Oct 2006
Total Posts : 17
   Posted 3/20/2013 3:31 PM (GMT -6)   
I usually only go on pred as a last resort to a flare but it definitely helps my UC more than anything else.  The only side effect I get while on pred is acne which is enough for me to stay clear of it. It will be nice if this is an alternative to pred to get a flare under control.

Tornado6
Veteran Member


Date Joined Mar 2013
Total Posts : 1149
   Posted 3/20/2013 5:25 PM (GMT -6)   
I am currently on budesonide oral and rectal, but my GI is calling in Uceris today. I do not anticipate my insurance covering it, but the office is going to put up a fight for me.

I'm having trouble with the budesonide enema, that's why we're trying to switch.
Ulcerative colitis / 35 / female

Currently:
budesonide - 9 mg orally and .5 mg / 100 ml enema /day
Imuran – 100 mg / dayu
Ca, Fe, Zn, Vit C, Vit D, Valerian root, molasses

Prior: Colestyramine, Xifaxan, Lialda, Apriso, Symax Duotab, Imuran, Remicade, Prednisone, Align, acidophilus, SCD yogurt
(flagyl, levaquin, methylprednisolone, RisaQuad, two units blood)

flgirl10
Regular Member


Date Joined Feb 2013
Total Posts : 72
   Posted 3/20/2013 8:39 PM (GMT -6)   
I started Uceris 5 days ago after being on entocort for two weeks (another Budesonide which didn't work at all). I have not noticed any of the awful side effects that pred gave me, which is amazing! I don't have trouble sleeping, puffy face (well yet), or abnormal joint pains.
I was having a pretty bad flare before starting Uceris (lots of blood, D, mucus, urgency, etc). I still have the Urgency but not nearly as bad and the D is still there but no more blood so I'm feeling a lot less tired and weak. I've only been on it 5 days though so hopefully there is more improvement

(not taking the entocort anymore but my signature won't change my meds haha)
21 yo female
dx: march 2011
Lialda 3 pills in the am
Entocort 9mg (3 pills) in the am
Tumeric
Glucosamine and vitamin d
Modified diet

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2732
   Posted 3/20/2013 9:13 PM (GMT -6)   
The impression I get is that UCeris is more slow acting on symptoms than pred - well I guess that is true of all budesonide - but over time it has some decent benefit. It's a shame it still has some slight systemic effects supposedly preventing it from being a maintenance med, because if it could be a maintenance drug then I could avoid surgery. Alas it isn't. Frankly I was prepared to self medicate forever if need be at 5 mg and below of pred - they say pred doesn't work for maintenance but I know for a fact that for several years low doses of pred cut my flare frequency and duration by 90% or so, and 5 mg of pred is in my opinion a harmless physiologic dose... But be that as it may 5 mg wasn't enough in my case for the past year and thus surgery is all that's left. But if nothing else UCeris looks to get me totally pred free going into surgery. Face puffiness has basically all disappeared and the added UCeris has not had any effect that ai can notice on my face or on my body other than suppressing inflammation somewhat. For those of you who do well on 5ASAs or imuran or biologics most of the time, UCeris should be a very safe flare wonder drug that you can probably use a couple times a year for life without any concerns (in my view).

Post Edited (Probiotic) : 3/20/2013 8:17:37 PM (GMT-6)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3058
   Posted 3/21/2013 8:14 AM (GMT -6)   
I just started it 3 days ago- a little too soon to notice any benefits. I don't feel the systemic effects like you do with pred- I haven't taken pred in years, so I think I'd be pretty sensitive to any steroid effects. My insurance does cover it (Harvard Pilgrim HMO), but it's the highest tier- $50 copay for one months supply. I've been taking it in the AM, which the website clearly states, but I notice it does give me a headache. My urgency does seem to have decreased a bit. I'm doing alright overall with my UC, but recent scopes still show active inflammation. So we're hoping the Uceris will knock that out. My GI has not used it before, so I'm the office guinea pig! We plan to give it a month or so, see if there's improvement, & if so continue on the full 8 week course.
diagnosed w/UC 2002
currently on Asacol, Imuran, Humira, Uceris
deliberating proctocolectomy w/end ileo...

Indycat23
Veteran Member


Date Joined Apr 2011
Total Posts : 523
   Posted 3/21/2013 8:36 AM (GMT -6)   
Probiotic-I thought they were testing the 6mg version of Uceris for maintenance? I see that it was in Phase 3 last year but don't see any new information on it.

also-I think vedozimulab has a shot at approval this year. It was just submitted for approval in Europe and should be submitted in the US soon. Not sure if you are anti-biologic. I'm holding on until this one gets approved and if it does not work, I'm cutting this ***** of a colon out.
Pancolitis-- Diagnosed 3/2011
Prednisone-tapering off
Asacol-800mg x6---Humira
Canasa or Rowasa Nightly
Black Cherry Extract -1/15/13
DHEA-25mg-1/17/13
Turmeric-2/20/13

Mattius459
New Member


Date Joined Mar 2013
Total Posts : 3
   Posted 3/30/2013 10:10 AM (GMT -6)   
Hello I just started Uceris yesterday. I was on 40mg Prednisone for 3 weeks prior to this. Is it okay that I switched from Prednisone to Uceris without any sort of taper or transition period? I'm not feeling so hot, but I think it may have to do with my not eating yesterday in order to have a stigmoidoscopy.

colitis91895
Regular Member


Date Joined Feb 2013
Total Posts : 226
   Posted 3/30/2013 11:17 AM (GMT -6)   
Does anyone know if you can take prednisone and uceris together?
I increased my prednisone dose because i'm bleeding to 35 mg from 25 mg
i'm still waiting for my uceris.
17 years old
Current Meds- Prednisone 30 Mg (Tapering)
Remicade 3rd Infusion
Ranitidine 150 MG for Reflux
Steriod suppositories once at night
Discontinued meds/ not working meds-
Asacol, Apriso, Lialda, Flagyl, sulfasalazine, 6MP, Methotrexate Injections(made my UC worse), Canasa, Rowasa, omeprazole

feemur
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/30/2013 11:52 AM (GMT -6)   
Started Uceris a little over two weeks ago. So far: miracles for me. I was prednisone resistant and flaring like mad. Now so much better. No side effects at all. Not in total remission, but the best I've been in about 9 months. Wish I could just take it forever but I gather that over time, it, too, can suppress your adrenal functions.

----
Diagnosed with UC in 2007
Been on everything.
Currently: Lialda and Uceris

hateuc
Veteran Member


Date Joined Jun 2010
Total Posts : 1732
   Posted 3/30/2013 12:15 PM (GMT -6)   
feemur,
That is awesome news. What about being able to take it every 2 days or so....I wonder if that would be problematic. I saw on another post that someone mentioned 6mg pills being tested for maintenance but who knows. I know it is a concern w/ steroids. Pls continue to keep us posted.
B
UC diagnosed in 2010 but had prob. in 2009
2 Lialda/day Rowasa nightly, periodic anucort supp, starting Cortifoam 8/12
VSL#3, slippery elm
Metamucil wafers

libidi
Regular Member


Date Joined Jun 2012
Total Posts : 281
   Posted 3/30/2013 12:40 PM (GMT -6)   
feemur said...
Started Uceris a little over two weeks ago. So far: miracles for me. I was prednisone resistant and flaring like mad. Now so much better. No side effects at all. Not in total remission, but the best I've been in about 9 months. Wish I could just take it forever but I gather that over time, it, too, can suppress your adrenal functions.

----
Diagnosed with UC in 2007
Been on everything.
Currently: Lialda and Uceris


That's great to hear. I thought if prednisone did diddly for someone, all other steroids wouldn't be tried.

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 2173
   Posted 3/30/2013 12:58 PM (GMT -6)   
I take Uceris while I taper pred. My GI set me on a plan how to taper.
Diagnosed with UC in '02
Past treatments: Prednisone, Mesalazine, Azathioprine (1.5 year semi-remission), MTX, Sulfasalazine, Remicade (2 year remission), Humira, Entocort, LDN
Current Treatments: Prednisone taper, Azathioprine 100 mg, Uceris 9 mg, Apriso 1,5 mg, Cortenema as needed
Currently flaring since beginning of '12 - now pancolitis
Last coloscopy: 2/28/2013

colitis91895
Regular Member


Date Joined Feb 2013
Total Posts : 226
   Posted 3/30/2013 1:22 PM (GMT -6)   
Thank you andrina
17 years old
Current Meds- Prednisone 30 Mg (Tapering)
Remicade 3rd Infusion
Ranitidine 150 MG for Reflux
Steriod suppositories once at night
Discontinued meds/ not working meds-
Asacol, Apriso, Lialda, Flagyl, sulfasalazine, 6MP, Methotrexate Injections(made my UC worse), Canasa, Rowasa, omeprazole

pink1
Veteran Member


Date Joined Jul 2010
Total Posts : 780
   Posted 3/30/2013 8:06 PM (GMT -6)   
I just finished a 2 month pred taper and I've been on Uceris around 10 days or so. Not sure if it is helping yet or not. I had some headaches and nausea the first 5 days on Uceris but it has stopped.
Tried: Mtx, Imuran, Humira, Remicade, Cortenema, Cortifoam, Rowasa, etc, etc, etc
Currently on: Uceris, 10mg pred, 9 colazal/day, cortifoam, zegerid, vitamin D, multivitamin, bentyl as needed
As of last scope (1/7/13): Moderate to severe to 25cm

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2732
   Posted 3/30/2013 9:01 PM (GMT -6)   
Re. the 6 mg uceris being safe for maintenance- I dont have the link handy but the manufacturer's own study showed no side effects whatsoever vs placebo at 12 mos, incl on bine density. Frankly, since I notice my face slightly puffed since I started uceris 2 weeks ago, and now even feel a little bit if insomnia, I find that very hard to believe indeed, just from a 9 mg to 6 mg change... It seems to me there will be some proportionate systemic effects. But hands down, for a given therapeutic effect, the systemic impact is very small compared to prednisone. i Wish uceris was around ages ago for my gazillion flares that required pred... Oh well.

Andrina
Veteran Member


Date Joined Aug 2011
Total Posts : 2173
   Posted 3/30/2013 10:17 PM (GMT -6)   
I can deal with the puffy face and I sleep intermitted anyways. But yes I will never go back to pred once this taper is done. It will always be Uceris from now on. I'm feeling so much better.
Diagnosed with UC in '02
Past treatments: Prednisone, Mesalazine, Azathioprine (1.5 year semi-remission), MTX, Sulfasalazine, Remicade (2 year remission), Humira, Entocort, LDN
Current Treatments: Prednisone taper, Azathioprine 100 mg, Uceris 9 mg, Apriso 1,5 mg, Cortenema as needed
Currently flaring since beginning of '12 - now pancolitis
Last coloscopy: 2/28/2013

Meemers
Regular Member


Date Joined Sep 2010
Total Posts : 331
   Posted 3/30/2013 10:48 PM (GMT -6)   
Eva, there is a plan out for no more than $25 out of pocket, ask your GI or pharmacy about this..most pharmacies should have that on hand by now.

Eva Lou said...
I just started it 3 days ago- a little too soon to notice any benefits. I don't feel the systemic effects like you do with pred- I haven't taken pred in years, so I think I'd be pretty sensitive to any steroid effects. My insurance does cover it (Harvard Pilgrim HMO), but it's the highest tier- $50 copay for one months supply. I've been taking it in the AM, which the website clearly states, but I notice it does give me a headache. My urgency does seem to have decreased a bit. I'm doing alright overall with my UC, but recent scopes still show active inflammation. So we're hoping the Uceris will knock that out. My GI has not used it before, so I'm the office guinea pig! We plan to give it a month or so, see if there's improvement, & if so continue on the full 8 week course.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3058
   Posted 3/31/2013 10:06 AM (GMT -6)   
yeah, I saw on the Uceris webpage that a whole bunch of these patrticipating pharmacies only charge $25 per month supply. Supposedly, if you're pharmacy participates, the script automatically rings up for just $25... well, I use CVS for any med that I don't mail order, & even though CVS is listed as a participating pharm, my script rang up for the whole $50. There is also some sort of savings card on the Uceris website, I may see what that's all about for my next months supply. Although if it turns out to be a big hassle, I'll just pay the $50. I'm only going to use the med for the 8 week course, so I can eat the $100 cost. Still liking the med, by the way- still having less bathroom trips, little to no bleeding, less urgency, more formed stools.... and really, zero systemic effects. I can maybe say a bit of imsomnia, but my sleep too is always a little wacked.
diagnosed w/UC 2002
currently on Asacol, Imuran, Humira, Uceris
deliberating proctocolectomy w/end ileo...

joyfulgirl
New Member


Date Joined Mar 2013
Total Posts : 3
   Posted 3/31/2013 11:39 AM (GMT -6)   
I have been on Uceris almost two weeks now. I was prepared to start azathioprine when Uceris became available so my GI wanted to try it out first. When I started Uceris, my GI had me do a rapid pred taper so that I would only be on both of them for about 5 days. I haven't noticed any improvement on Uceris. I am still having a pretty bad flare, which actually seems to be worsening in terms of frequency and blood loss. I wonder if it just takes a while on Uceris before symptoms begin to improve...I really want it to work because I don't want to start azathioprine.
I also take Lialda and Canasa.

libidi
Regular Member


Date Joined Jun 2012
Total Posts : 281
   Posted 3/31/2013 12:11 PM (GMT -6)   
Andrina said...
I can deal with the puffy face and I sleep intermitted anyways. But yes I will never go back to pred once this taper is done. It will always be Uceris from now on. I'm feeling so much better.


Not to sound like a jerk but what about the Aza and Apriso you're taking? I'm taking prednisone right now with mesalamine oral and I find it hard to distinguish what's doing what. Are Azathiopurine and Apriso just something you are taking for maintenance which you'll end up stopping for just Uceris?

Sometimes with how varied this disease is for everyone, it's hard trying to find someone who I can relate to. I'm two drugs off of having same the same treatment plan as you right now, lol. What were symptoms like throughout your current flare? Mine seems to be bleeding predominantly.

Thanks
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