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Long-term Uceris/budesonide?

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Ulcerative Colitis
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/1/2020 2:05 PM (GMT -7)
Have any of you taken Uceris/budesonide long-term (months or years)? I only found one study where folks took it for a year, but it was 6 mg, not the 9 mg pills we have here in the U.S. I'm debating what I want to do next. I'm doing very well on just Uceris and my mesalamines. I just worry about bone loss, but in the one study I read, they did not have any bone loss after a year on 6 mg. After my recent experiences, I'm hesitant to jump right to another biologic right now.

Btw, my GI told me I could stay on Uceris forever if I wanted to.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18304
Posted 3/1/2020 4:06 PM (GMT -7)
Just my 2 cents, when a drug manufacturer says not to use one their drugs longer than 8 weeks, I think I will go with them over a dr.. Their website gives good information. Perhaps you need to show the dr the info from their website.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/1/2020 4:40 PM (GMT -7)
I have a great GI who knows the potential risks of medications he prescribes and how the medication is typically prescribed. Drug companies say certain things to avoid being sued, they can only say what they did in their clinical trial. Haven't you ever been on prednisone longer than 2 months...? I've already been on it longer than 8 weeks, btw. Like I said, there was a study where folks were on it for a year and there weren't any negative long-term effects seen.

I should add that my GI gave me this as one of many options and said this might not be the best choice or the one he would necessarily recommend but he did tell me I could do it. There are only so many options we have and I haven't had good experiences so far with biologics or immunosuppressants.

Anyone who has experience with this or who has researched it?
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straydog
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Joined : Feb 2003
Posts : 18304
Posted 3/1/2020 5:02 PM (GMT -7)
Of course all drug companies do the CYA thing they have to for many reasons. Long term steroids got me in the mess that I am in. If you are comfortable using Uceris longer that is your decision. Same with anyone using bios, it's personal choice. Some people have side effects from them & some do not.
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Makemesmile
New Member
Joined : Mar 2020
Posts : 6
Posted 3/1/2020 7:15 PM (GMT -7)
Hi Sara14, I was on Uceris 9mg daily for 8 months. I just stopped a little over 2 weeks ago. I had no undesirable side effects while on it and I'm keeping my fingers crossed that I won't go into a flare now that I'm not on it anymore. So far so good. I'm also taking Lialda,  been on it for many years. I started the Entyvio infusions in October 2019 so my doctor kept me on Uceris longer as a bridge to Entyvio.

I was really worried about being on Uceris for that long and but at the same time I was scared to get off of it at the fear of flaring again. I was on pins and needles when I stopped Uceris to see if I was gonna flare up but I have not. I was anxious to be off of Uceris to see if Entyvio was working. Needless to say it was a rollercoaster of mixed emotions.
Like I said, so far so good. Fingers and toes crossed!

Like your doctor,  my doctor also said I could've stayed on Uceris forever.

Good luck!
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iPoop
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Joined : Aug 2012
Posts : 16180
Posted 3/2/2020 6:11 AM (GMT -7)
Originally budesonide/uceris was intended to be a maintenance medication, until they found the typical steroid side effects popping up in some. You already know about the systematic absorption 10-20%, so it will affect your bones, blood sugar, eyes, among other things both in the short term and long term. Sounds risky to consider long term usage.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/2/2020 7:06 AM (GMT -7)

Makemesmile said...
Hi Sara14, I was on Uceris 9mg daily for 8 months. I just stopped a little over 2 weeks ago. I had no undesirable side effects while on it and I'm keeping my fingers crossed that I won't go into a flare now that I'm not on it anymore. So far so good. I'm also taking Lialda,  been on it for many years. I started the Entyvio infusions in October 2019 so my doctor kept me on Uceris longer as a bridge to Entyvio.

I was really worried about being on Uceris for that long and but at the same time I was scared to get off of it at the fear of flaring again. I was on pins and needles when I stopped Uceris to see if I was gonna flare up but I have not. I was anxious to be off of Uceris to see if Entyvio was working. Needless to say it was a rollercoaster of mixed emotions.
Like I said, so far so good. Fingers and toes crossed!

Like your doctor,  my doctor also said I could've stayed on Uceris forever.

Good luck!

Thanks so much for sharing that! I hope the Entyvio works for you for a long time!


iPoop -- That's interesting. I did not come across that when researching. The only year-long study I came across showed no bone loss. Do you happen to have a link to that? Thanks.
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iPoop
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Posts : 16180
Posted 3/2/2020 8:25 AM (GMT -7)
Hmm always hard to find the exact study I read years ago about the initial clinical studies for those meds.

Several recent pullups show that 1-year out budesonide maintenance did not retain patients in a remission, results not sustained long term.

PDF page 4, under adverse events described typical steroid side effects aka cushing's syndrome: moonface, buffalo hump, etc. https://www.gastrojournal.org/article/s0016-5085(96)00042-x/pdf

This is a little harder to read, but does talk about some of the earlier clinical studied and some contradictions against those. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-2036.1997.tb00814.x
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/2/2020 10:53 AM (GMT -7)
Thanks! I'll take a look after work.
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deee19
Regular Member
Joined : Dec 2019
Posts : 234
Posted 3/2/2020 4:34 PM (GMT -7)
Hi Sara14
I have taken uceris thrice before my current flare right now. The first time I took it was for 8 weeks, 2nd time for a month and 3rd time for a month. Due to this usage I ended up with osteoporosis. Be very careful. I have been in a flare since october 2019 now and was avoiding uceris due to the side effects. I finally took it 15 days ago as I was just really sick. Within one week my glucose was high which has always been normal.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/2/2020 4:36 PM (GMT -7)
Really? That's shocking that little amount of Uceris could cause osteoporosis. Your doctor thinks that was the cause? The study I saw had people on it for a year and did scans on all of them and none of them got it after a whole year. My glucose is normal on it. Sorry you had a bad experience and thanks for sharing!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/2/2020 5:54 PM (GMT -7)

iPoop said...
Hmm always hard to find the exact study I read years ago about the initial clinical studies for those meds.

Several recent pullups show that 1-year out budesonide maintenance did not retain patients in a remission, results not sustained long term.

PDF page 4, under adverse events described typical steroid side effects aka cushing's syndrome: moonface, buffalo hump, etc. https://www.gastrojournal.org/article/s0016-5085(96)00042-x/pdf

This is a little harder to read, but does talk about some of the earlier clinical studied and some contradictions against those. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1365-2036.1997.tb00814.x

In the first study you posted, it says the steroid side effects were similar in the placebo, 3 mg and 6 mg groups. It says that in the results summary on the first page. On page 4, it actually says more people taking placebo reported adverse events overall and that the effects that would be considered corticosteroid-induced were not statistically significant, so I'm not seeing what you're seeing. I haven't read your other study yet but will. Still, thanks for sharing as I had not seen this study before.
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notsosicklygirl
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Joined : Dec 2008
Posts : 17750
Posted 3/2/2020 9:48 PM (GMT -7)
I was taking it for quite a while, definitely, more than the 8 weeks suggested. For me, it became less effective over time. Eventually, I got to the point where it was necessary to go back on prednisone or make another decision. I ended up having surgery. Taking steroids long-term was just never something I was willing to do personally. It's all very personal and no one can really say what is best for you. You have to weigh your options. hopefullly, you respond to something other than steroids so you can move on with life without worrying about side effects.
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greenuc
Regular Member
Joined : Sep 2011
Posts : 266
Posted 3/3/2020 9:44 AM (GMT -7)
The research I did a while back showed it safe for long term use.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/3/2020 9:56 AM (GMT -7)
Thank you, nssg and greenuc!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/7/2020 1:16 PM (GMT -7)
I think I might try Entyvio. I like that it doesn't have a cancer side effect. That really freaked me out with Remicade and Humira. It's nice to know I have Uceris to fall back on. I'd kind of rather just stay on Uceris but I don't know. Tough decision.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 916
Posted 3/7/2020 3:29 PM (GMT -7)

Sara14 said...
I think I might try Entyvio. I like that it doesn't have a cancer side effect. That really freaked me out with Remicade and Humira. It's nice to know I have Uceris to fall back on. I'd kind of rather just stay on Uceris but I don't know. Tough decision.


I thought all biologics have cancer as a potential side effect because they modulate the immune system.
From the list of recorded adverse effects on entyvio:
Oncologic

Rare (less than 0.1%): Transitional cell carcinoma, carcinoid tumor of the appendix

Frequency not reported: B-cell lymphoma, breast cancer, colon cancer, malignant hepatic neoplasm, malignant lung neoplasm, malignant melanoma, lung cancer of primary neuroendocrine carcinoma, renal cancer, squamous cell carcinoma[Ref]
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/7/2020 6:50 PM (GMT -7)
Nope because it only targets the gut. I read through the entire clinical trial and medication prescribing information last night. It wasn't any different than placebo for the cancer risk. There is no black box warning for Entyvio.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 916
Posted 3/8/2020 4:32 PM (GMT -7)
Ah ok (i don't know what a black box warning is because we don't have them over here). I read some of the trials which showed 0.3% incidence of malignancy in placebo and 0.4% in patients on entyvio. The problem with that study was the placebo group was much smaller than the entyvio group such that only one patient in ~300 had a malignancy on placebo which makes it hard to estimate the true rate (could be 1 in 200 or 1 in 1000 but if you take a sample of 300 you're not going to know). But obviously 0.3% is not statistically significant relative to 0.4%
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 3/8/2020 7:25 PM (GMT -7)
There wasn't anything wrong with the study you quoted. That was the clinical trial study. If it was good enough for the FDA and nothing worse has shown up since it was approved in 2014, then it sounds pretty darn good to me. Skimmed several other papers and read an interview with a doctor too. They all said it has an excellent safety profile.

Black box warnings are given by the FDA for very serious potential side effects. Humira, Remicade, Xeljanz, etc. all have them for cancer and serious infections.
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poopydoop
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Joined : Dec 2018
Posts : 916
Posted 3/9/2020 1:24 AM (GMT -7)

Sara14 said...
There wasn't anything wrong with the study you quoted. That was the clinical trial study. If it was good enough for the FDA and nothing worse has shown up since it was approved in 2014, then it sounds pretty darn good to me. Skimmed several other papers and read an interview with a doctor too. They all said it has an excellent safety profile.

Black box warnings are given by the FDA for very serious potential side effects. Humira, Remicade, Xeljanz, etc. all have them for cancer and serious infections.

Sara i am a scientist and capable of my own critical analysis of these things
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