Long-term Uceris/budesonide?

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.

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?

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!

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.

Thanks! I'll take a look after work.

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!

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.

Thank you, nssg and greenuc!

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]

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%

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