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Crohn's Disease Forum » Ulcerative Colitis Forum » Uceris for ulcerative colitis


05-31-2013, 10:08 PM   #1
Jackie Aba
 
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Uceris for ulcerative colitis

I've been diagnosed with both Crohn's and UC. Recently I read that Uceris
has been approved by FDA for use in UC. It is a steroid called budesonide which is supposed to work to decrease inflammation in the entire colon but
without the systemic side effects of prednisone. Anyone using this yet?
My GP said it would be worth a try. Aside from UC I also have asthma and have used budesonide in an asthma inhaler for many years so know that I am
not allergic to it. The drug description is a bit confusing. On one hand it says
that it has no more side effects than placebo but then goes on to list what seem to be all the same side effects possible with prednisone use.
06-01-2013, 08:08 AM   #2
sickinlk
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no I haven't tried it yet. you can see what I have tried below. I reckon everythings worth a go. as long as you are being monitored, sure why not?
ju
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Julie 36 y/o female.
dx'd with UC in june 2011.
intolerant to 5 asa's caused pancreatitis!!
steroid resistant
on remicade since sep'12. doubled the dose in june'13
May'13 added 6-mp. on 75mg.
CAme off remicade April '15, hoping to get back on it asap.
06-01-2013, 08:41 AM   #3
nogutsnoglory
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I do not have UC but have been on Entocort which is the same drug being released in the small intestine. Since it is absorbed in the gut, less than 10% of the steroid gets into the blood stream and you have fewer side effects. Please know though that side effects can still occur, I have had them on Entocort.

You said you have Crohn's and UC. They are sister diseases but you can't have both since they manifest in different ways. Did your doctor say you have Crohn's colitis? That's Crohn's disease limited to the colon.
06-01-2013, 09:48 AM   #4
Dexky
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Good grief, it's hard to do anything on a phone!! AZMOM's daughter has been on uceris for a couple months now.

...and if I knew how to paste the link on this stupid phone I would. Instead, you can find it by searching uceris in the parents forum. Ughh, good luck!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-01-2013, 11:02 AM   #5
Jackie Aba
 
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I do not have UC but have been on Entocort which is the same drug being released in the small intestine. Since it is absorbed in the gut, less than 10% of the steroid gets into the blood stream and you have fewer side effects. Please know though that side effects can still occur, I have had them on Entocort.

You said you have Crohn's and UC. They are sister diseases but you can't have both since they manifest in different ways. Did your doctor say you have Crohn's colitis? That's Crohn's disease limited to the colon.
I was age 65 when diagnosed with segmental Crohn's after a colonoscopy by local gastro dr. A later second colonoscopy showed pancolitis. Several years later I went for second opinion to a gastro dr. at Yale New Haven, and she said moderately severe pancolitis extending from the rectum in a continuous fashion to the cecum with a normal ileum, the pattern is more consistent with ulcerative colitis and Crohn disease. Now the local gastro refers to it as Crohn's/Colitis, so I really don't know if it is Crohn's or UC.
06-01-2013, 11:33 AM   #6
kel
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This is my 3rd day on uceris. I noticed an immediate difference in how my gut felt within 12 hours of the first dose (similar to my past experiences with prednisone). I am still having some diarrhea but definitely feel better overall. Only time will tell if it works as well as prednisone has for me in the past.

I know it is very expensive, but try to get some samples from your GI. I was given 42 tablets in sample packages just because I asked for them (over $1000 wholesale price)
06-01-2013, 12:24 PM   #7
sickinlk
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good news then.
long may it last.
ju
06-01-2013, 02:12 PM   #8
Jackie Aba
 
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This is my 3rd day on uceris. I noticed an immediate difference in how my gut felt within 12 hours of the first dose (similar to my past experiences with prednisone). I am still having some diarrhea but definitely feel better overall. Only time will tell if it works as well as prednisone has for me in the past.

I know it is very expensive, but try to get some samples from your GI. I was given 42 tablets in sample packages just because I asked for them (over $1000 wholesale price)
Thanks for the info. and tip to ask for samples. I'll be seeing the gastro dr.
soon because they want to schedule another colonoscopy....will definitely
ask about Uceris and request samples. By the way, I tried Remicade but had to quit because of severe intolerance to the infusions.....then tried Cimzia with no positive effect. I have been taking LDN for years now, down to 2 1/2 mg. daily of prednisone, and within the past months found much help from yarrow herb extract to control bleeding (worked!) and also olive leaf, turmeric, and a small amount of licorice herbal extracts for inflammation.
06-06-2013, 02:02 PM   #9
Norcali
 
Join Date: Feb 2013
I was out in Uceris for 6 weeks then have been tapering for what feels like forever... My symptons started to come back.. but still not as bad. Just stopped taking this week totally and I am struggling. I feel moody, so tired then very high, then the bruising. I have maybe 60 little bruises all over my body. My friend grabbed my arm when we were walking, I didn't think anything if it and more bruises. Side effects are there but not as bad as going to the bathroom 15-20 times a day. If I get another flare-up I would still take it.

On Asacol 2/2x daily
Lansoprozole
Probiotics, vitamins
Colotis @18 Crohn's & lymphocitic colitis@30
06-06-2013, 07:33 PM   #10
kel
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How do you taper on uceris? It only comes in a 9 mg tablet.
06-06-2013, 08:04 PM   #11
Norcali
 
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My doctor had me alternate days for 1 month. Then every 3 days for 2 months. Then stop... I didn't finish fully before he just stopped me. Lots of bruises, and just exhausted.
06-06-2013, 10:11 PM   #12
Jackie Aba
 
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I was out in Uceris for 6 weeks then have been tapering for what feels like forever... My symptons started to come back.. but still not as bad. Just stopped taking this week totally and I am struggling. I feel moody, so tired then very high, then the bruising. I have maybe 60 little bruises all over my body. My friend grabbed my arm when we were walking, I didn't think anything if it and more bruises. Side effects are there but not as bad as going to the bathroom 15-20 times a day. If I get another flare-up I would still take it.

On Asacol 2/2x daily
Lansoprozole
Probiotics, vitamins
Colotis @18 Crohn's & lymphocitic colitis@30

Thanks for your input. When you read about Uceris they say on the one hand that it has no more side effects than placebo, but then they list nearly all the same adverse effects of taking prednisone. I've been on and off (mostly on) various steroids for many years...first for asthma and now for UC. The bruising and thin skin which easily tears are a real prednisone problem. The steroid budesonide which is in Uceris is the same as in my asthma inhaler and that claims to have little systemic involvement. The cost of these medications is shameful. But, you are right about weighing the adverse effects against a lifetime in the bathroom.
06-06-2013, 10:27 PM   #13
Norcali
 
Join Date: Feb 2013
The exhaustion and bruising only got bad after long term use. Honestly, it was really great to have control back and energy for 2 months. It turned me around. I mean steroids are never fun but this was a little easier and worked for me... Glad to help. There isn't a lot out there in uceris.
06-25-2013, 05:49 AM   #14
AZMOM
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We love Uceris!!!!! I am crediting Uceris and a bump in MTX for Claire's complete turnaround. We saw results in DAYS. that's a lot of caps but you get my point
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
07-18-2013, 09:01 AM   #15
Jackie Aba
 
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Thanks for the info. about Uceris. I had samples from my dr. and have been on it for
two weeks. I haven't taken it long enough to know how helpful it will be. It's very
strange how they advertise it with a safety profile similar to placebo, but the package
inserts list all the same possible adverse effects as prednisone. Let us know how it works for you.........and I will do the same.
07-18-2013, 06:49 PM   #16
Dexky
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My son has been on it for 4 weeks or so and he has the same puffy cheeks that he gets with pred and the appetite may be even more pronounced. I don't think the excess energy is as bad.

After speaking with our GI about these effects, we are going to only take it every other day to see if it helps. Fingers crossed!!
07-20-2013, 10:21 PM   #17
Jackie Aba
 
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Every other day with the Uceris for your son sounds like a good test. I have been taking one pill every 30 hrs. instead of every 24 hrs. That can be a bit
confusing but does reduce the dose. Too bad there was not a Uceris
pill with less than 9 mg. I'm only 95 lbs. and believe that my dose of medication should not necessarily be the same as for a 150 lb. person, but doctors do not always agree with that.
07-21-2013, 06:39 AM   #18
Dexky
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Too bad there was not a Uceris
pill with less than 9 mg. I'm only 95 lbs. and believe that my dose of medication should not necessarily be the same as for a 150 lb. person, but doctors do not always agree with that.
We were somewhat surprised by that as well. It's early yet, but we do think we're seeing a little less puffiness. Maybe it's just wishful thinking.
04-23-2014, 11:41 AM   #19
Eli_d
 
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I took this medication for 4 weeks now. at the start it looks like it started to work really well but as time went on its effectiveness is questionable in my case. But then I noticed that if I took it first thing in the morning, on empty stomach, it seems to have worked better then let's say after breakfast. but it's all questionable...
I've just started to taper so wish me luck... I really don't wanna take any of these monstrous drugs anymore. gotta find a long term solution
04-23-2014, 11:43 AM   #20
Eli_d
 
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P.S. the reason I question it's effectiveness is because i also changed my diet when i noticed that Uceris wasn't doing much... so I don't know what put me in remission
04-23-2014, 03:01 PM   #21
Jackie Aba
 
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Glad to hear from someone who tried Uceris. It was quite a while ago when I first tried Uceris. I took it every day for close to 2 months but found it to be ineffective, and it made me generally feel unwell and greatly increased gassiness. I had high hopes for Uceris because it is less harmful than prednisone and am sorry it did not help. Now I am taking 2 1/2 mg. daily of
prednisone, not in remission by any means, but in better control. The biologics Remicade and Cimzia which I tried several years ago did not work either. Perhaps if things get worse, Humira might be worth considering, but I sure
would like to do without it. My gasto dr., of course, tells me that continuous
use of prednisone is also harmful, but I hope that the 2 1/2 mg. dose is small
enough to be relatively safe.
04-25-2014, 11:18 PM   #22
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I started a flare last month with frequent and bloody bathroom visits with a side of horrible lower back pain surrounding a nerve. I could hardly lift my left leg to even get out of bed or off the pot. Found a few leftover hydrocodone that helped with pain. After researching juicing online started juicing 1 apple, 2 carrots, and some cabbage every morning and evening. I think it really helped with the frequent trips to the bathroom. Blood is still present though. Went to family doc for more pain meds and then gi doc for the other problem. He wanted to put me on humira because I did so well on remicade for over 2 years until started having reactions. After researching humira I decided I didn't like what I was reading so turned that down. Doc then put me on the uceris. Never heard of it before. I was on it for a few days but I've been in so much pain I requested some prednisone for my back inflammation. I don't like to mix meds so for now just taking the prednisone until finished and then I think I will go back to the uceris.
04-26-2014, 12:53 PM   #23
Jackie Aba
 
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Hope you are able to give Uceris a try before long. It's strange how although
folks are diagnosed with the same type of illness, certain drugs work for some
but not for others. It is a mystifying thing this IBD! I juice also and have
started using Citrucel which seems to help bulk things up. Remicade infusions became so difficult with lots of painful side effects so had to give that up, but even while I was first getting the infusions there was no improvement. Thank
God for prednisone....always have to worry about it's side effects, but it does
provide relief. The budesonide in Uceris is a type of steroid similar to prednisone but with fewer side effects. I have asthma and have used an inhaler with budesonide for years and feel safe with it....but the Uceris didn't seem to travel far enough to the lower bowel to be effective. I do hope it
will work for you.
05-05-2014, 05:09 AM   #24
mama21princess
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Uceris was great for helping with my IBD symptoms, but it gave me horrible migraines. I would rather take prednisone.
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Diagnosed with UC- May 2013
Diagnosis changed to Crohn's colitis(maybe?)- Feb. 2014
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Meds-
Lialda-Made symptoms worse?
Uceris
Prednisone
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06-27-2014, 10:33 AM   #25
7vNH
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I find it more than a bit annoying that Santarus takes an older drug, wraps it as delayed relaese, and charges US customers an unreasonably high price. They put up manufacturers coupons as a defense, but if you look closely at those, customers still have to pay a fortune. You can get budesonide 3mg, which you take 3 times a day, for less than 1/20th of the price of Uceris, but you need to order it from outside the US.
06-27-2014, 10:53 AM   #26
AZMOM
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I find it more than a bit annoying that Santarus takes an older drug, wraps it as delayed relaese, and charges US customers an unreasonably high price. They put up manufacturers coupons as a defense, but if you look closely at those, customers still have to pay a fortune. You can get budesonide 3mg, which you take 3 times a day, for less than 1/20th of the price of Uceris, but you need to order it from outside the US.
Well the Uceris releases differently. She did not do well on Entocort because it didn't have the prolonged release across the colon. Her GI wanted to try Uceris because the release was different (laymen's terms). It did make a difference for my daughter and she had a dramatic improvement.
09-08-2014, 08:10 PM   #27
Bausarita
 
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Pharmaceutical companies are rapists. They ought to be better regulated with their out of control, exorbitant prices. It's shameful how they manipulate things. I feel so bad for folks that don't have good coverage. I have some of the best coverage in the US AND Uceris costs me $75 for 30 days worth, Lialda costs me the exact same. I take both. $1,800/yr. prednisone costs me $5, alprazolam $3, Fluoxetine $10 a month. ~NetNet
11-11-2014, 07:46 PM   #28
warn81
 
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My Gi doc gave me samples today of Uceris....keeping my fingers crossed. Never tried prednisone...hope this works for me.
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