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Uceris - Anyone Try It

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Ulcerative Colitis
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Posted 3/31/2013 5:30 PM (GMT 0)
Is anyone telling you that you can use uceris for maintenance? Itis simply a flare drug, from my understanding- a much safer repeated flare drug than pred but still just a flare drug. Uceris is sort if a wonder drug for me right now, but since its just a bandaid and no non steroidal drugs do a thing for me, it just makes me functional in the leadup to surgery. Most of you who benefit from mauntenance drugs will have a wonder flare drug now, though.
Posted 3/31/2013 8:03 PM (GMT 0)
Another thing to keep in mind is Uceris is indicated for mild to moderate, not for severe flares.
Posted 4/1/2013 12:48 AM (GMT 0)
For those of you with Doctors that refuse to prescribe Uceris, here is something to throw in their face:

www.ncbi.nlm.nih.gov/pubmed/22892337

Budesonide MMX is Uceris (before they had a name for it)

Highlights:

The rates of clinical improvement at week 8 among patients given 9 mg or 6 mg budesonide MMX or mesalamine were 33.3%, 30.6%, and 33.9%

The rates of symptom resolution at week 8 among subjects given 9 mg or 6 mg budesonide MMX or mesalamine were 28.5%, 28.9%, and 25.0%

So there you go, it is more effective than mesalamine, and almost 30% have their symptoms resolved. These numbers are likely much higher when you COMBINE mesalamine (tabs or enemas) with Uceris.

28.5% makes it worth a try obviously, as that means close to a third will have their symptoms resolved.
Posted 4/1/2013 3:34 AM (GMT 0)
For those of you who have started uceris, when did improvement start?

I've been on it for 3 days and have noticed no reduction in symptoms.
Posted 4/1/2013 8:43 AM (GMT 0)

Mattius459 said...
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.

Have you got a doctor's advice on that? If not you definitely should. My guess would be that it's not ok, as Prednisone shuts down your ability to produce steroids, and Uceris, as I understand it, only delivers those needed steroids to your colon.

Great news that Uceris is working for people but I wouldn't expect it to work as a maintenance medication. I would expect the same sort of tolerance to build up as with Prednisone. But hey, I'm no doctor, and I'm crossing my fingers anyways!
Posted 4/1/2013 8:47 AM (GMT 0)

chicagobulls11 said...
For those of you who have started uceris, when did improvement start?

I've been on it for 3 days and have noticed no reduction in symptoms.

What else are you taking?

I'm tapering pred while being on Uceris and I'm still doing well.
Posted 4/1/2013 12:50 PM (GMT 0)
I just did some research on the cost of Uceris..thru Walgreens the cost is $1500! I'm on Medicare Part D govt. insurance and it is not covered and there is no generic. I can have my dr. request authorization thru the Part D plan and see if it will be covered. The uceris website leads you to belierve you can get it for $25 copya....that's if it's covered in an insurance plan...then Walgreens charges the insurance co for the difference. I'm 74, I can do this research, what happens for those who can't?

There's got to be a better way!

Current meds: prednisone, humira, asacol hd; carvididol, torsemide, vsl#3-2 pkts
diagnosed in 2009 with uc. been in "flare" since mid-dec/2012
Posted 4/1/2013 3:36 PM (GMT 0)
Just an update,  I have been on the 9MG Uceris dose for over a week now. I have not seen any noticeable changes. Anyone else on this medication and noticed it took a little longer to kick in?
Posted 4/1/2013 5:20 PM (GMT 0)
My thinking is the drug is expensive to manufacture because even the generic entocort costs about $1200 for a months supply, and entocort and uceris are similar.

I guess if your insurance doesn't cover it, you'd have to see if the manufacturer has any special plan to get it to you cheaper.
Posted 4/1/2013 5:31 PM (GMT 0)
The thing is these are new patented drugs. This happens with all new meds on the market. It costs millions and millions of dollars to develop and test these meds so they charge an arm and a leg when these first come out. It probably costs them less than $50 to make these drugs and then they charge $1300 until the patent runs out, after which the generics will probably only cost about $50, but that will be a few years down the road. This is what gives pharmacutical companies the incentive to develop new drugs and they use the megaprofits earned from these new drugs to spend the millions and millions in developing other new drugs. Generics can not legally be made until the patent runs out. Right now Asacol costs, without insurance, are over $500 per month in the US and the patent runs out in the middle of this year. As soon as generics are available once the US patent runs out, the drug will drop from over $500 per month down to about $50 per month.
Posted 4/1/2013 11:02 PM (GMT 0)
My GI believes that budesonide oral + rectal should achieve the same result for about $1240 less per month less.

Now if I could only tolerate the enemas...
Posted 4/1/2013 11:32 PM (GMT 0)
Sadly entocort enemas are not available in the U.S.
Posted 4/2/2013 1:44 AM (GMT 0)
Sure they are. I have 12 in my fridge right now. You can either order them from Canada or have them compounded here. Walgreens compounded mine.
Posted 4/3/2013 3:48 AM (GMT 0)
Been on Uceris for almost two weeks. I've only noticed a small change in symptoms, with more formed stools and a little less blood sometimes. Yet there are still times where its loose and more blood. I'm very gassy and crampy at night, and crampy right after meals. I think my GI wants to use Uceris as a holdover until the Remicade infusions I'm on kick in, if they do. I'm also hopeful for vedolizumab in the near future.
Posted 4/3/2013 6:48 AM (GMT 0)

Lacaille said...

Mattius459 said...
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.

Have you got a doctor's advice on that? If not you definitely should. My guess would be that it's not ok, as Prednisone shuts down your ability to produce steroids, and Uceris, as I understand it, only delivers those needed steroids to your colon.

Great news that Uceris is working for people but I wouldn't expect it to work as a maintenance medication. I would expect the same sort of tolerance to build up as with Prednisone. But hey, I'm no doctor, and I'm crossing my fingers anyways!



I am following GI instructions, he was okay with the cold turkey on prednisone, although maybe it just didn't cross his mind? I see him again on Thursday, maybe I should bring up the fact that most people on this forum are being simultaneously tapered down while starting Uceris. It has also been 5 days and I am feeling better not worse so maybe it was okay? Are adrenal problems something I would immediately feel?
Posted 4/3/2013 11:08 AM (GMT 0)
I specifically asked twice about switching from prednisone to budesonide without a taper. The GI and the nurse both confirmed that is what they wanted. I wound up taking 50 mg of prednisone on 3/12 and 9mg of budesonide on 3/13. No taper.
Posted 4/3/2013 12:58 PM (GMT 0)
I'm tapering pretty fast. 10 mg every 3 days. I should be done by the 8th. For how long were you taking the 50 mg?
Posted 4/3/2013 6:38 PM (GMT 0)
Hearing some funny things about tapering prednisone in here.

Your body makes about 8-10 mg cortisol normally on a NORMAL day.

On a really bad day it can surge to 10x that or 80-100 because it is elastic, the body calls for more due to stress or surgery and it makes more.

I think you can see how with normal days and high doses you can easily 'chop' your dose.

However as you get lower and closer to zero your adrenals had better be out of hibernation.

If you go to zero and are fine for several days your probably in the clear.

The literature says : Once off prednisone you may need additional dosages occasionally on bad days up to 12 months later. So even after they wake up the adrenals are somewhat inelastic and cannot ramp up super duper production on-demand until fully recovered.

The risk is adrenal shock which causes so much body pain and mind fog the last thing to occur to you is that you should get back on a small dose.

Adrenal shock ultimately becomes fatal because your entire vascular system loses all tension, relaxes and you go to zero blood pressure and pulmonary failure.
Posted 4/3/2013 7:43 PM (GMT 0)
My GI confirmed that cortisol wise I'll be fine. He said there is no risk of Addison's disease. He says we taper so slow because of the inflammation. I trust him with this because I have been tapering and doing ok.
Posted 4/3/2013 8:59 PM (GMT 0)
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.

Post Edited (StealthGuardian) : 4/3/2013 3:02:16 PM (GMT-6)

Posted 4/3/2013 10:19 PM (GMT 0)
Anyone having increased reflux and/or gastritis since starting Uceris? I can't decide if it is the Uceris making the reflux worse or I'm just in a reflux flare.
Posted 4/3/2013 10:29 PM (GMT 0)
I've been on Uceris for almost a month and I can't believe how quickly it helped me. I noticed a difference within a couple of days. Less urgency, gas, more formed stools, etc. I'm almost at the end of my prescription so I'm curious to see how I'll feel when I go off. I'm definitely feeling great now. I hope I stay that way! :-)
Posted 4/3/2013 10:33 PM (GMT 0)
Hi Pink,

Your sig says you are on 10 mg of prednisone. I would think that is the possible cause of your reflux.
Posted 4/3/2013 10:33 PM (GMT 0)
^Need to update that! I tapered off finally last week.
Posted 4/3/2013 11:38 PM (GMT 0)

Andrina said...
I'm tapering pretty fast. 10 mg every 3 days. I should be done by the 8th. For how long were you taking the 50 mg?

60mg for a week, then 50mg for a few days, the switched to budesonide. I was on it as a gap to get me to my new GI.

9mg of budesonide is the equivalent of 40mg of prednisone.
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