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Does Uceris foam work better?

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Posted 1/5/2020 6:51 AM (GMT -7)
Does the Uceris foam work better than the pills? The pills do nothing for me, never have. Wondering if it's worth me asking for the enemas or not. I might have to go on pred. I don't know how to just suffer through this if it lasts a month or two (or more) longer. I decided to try Xeljanz next after the bloodtests for Humira come back. Now I kinda wish I had increased my Remicade dose because it's been 8 weeks of waiting on Humira with zero results and Remicade had me in remission for 9 wks at least.
Posted 1/5/2020 8:14 AM (GMT -7)
I wasn’t aware of a foam version of Uceris. I also found that Uceris pills have no effect on me but man do I hate taking Prednisone, that stuff works but it turns me into another person. I’m curious to hear what people have to say about the pill version of Uceris.
Posted 1/5/2020 9:22 AM (GMT -7)
I'm not sure if it's the same as I'm in UK but I use budenofalk enemas which are a budesonide foam - is that the same as uceris? If so, I found them to be pretty effective at stopping bleeding. They are OK to use as are relatively small volume of foam so doesn't cause too bad cramping. I've heard that oral budeonside can be less effective than pred but fewer side effects. I think it sometimes helps people with crohns more as they release in the small bowel. It's worth trying the enemas if you can get them. Sorry you are having such a bad time. I'm failing humira too and starting to flare again sad it's so hard. Take care and wishing you better soon x
Posted 1/5/2020 9:37 AM (GMT -7)
I hate to say it, but I would imagine it doesn't work as well, simply because it's only effective for a small area. It is topical so it could help with residual inflammation in the rectum but that's all. With the tablets, they will help reduce overall inflammation, which is much more helpful in general. A steroid enema is similar but probably more potent than a uceris enema. Did you say you can't use steroid enemas? It can't hurt to try the uceris ones...
as for wishing you had tried the larger dose of remicade, I think we will always have these types of regrets. I have a tiny bit of regret that I never tried xeljanz, but it's so far in the past now, I couldn't care less. How long would that have worked for me even if it had worked? Plus, I hate to be stuck in the "system" forever. I hated spending all the money on doctors and drugs. I am better off now... Anyway, what I was going to say is that I did try the increased dose of Remicade and it didn't do one iota. I ended up with a massive infection that led to sepsis, so in my case, there was a very bad outcome from going that route. I think xeljanz is a much better option for you. The chances of Remicade working at a higher dose seems slim.
Posted 1/5/2020 9:59 AM (GMT -7)
Dealing with the rectum via meds is always worth trying. I wouldn't say better than...I would say specific for what it was designed.

q
Posted 1/5/2020 9:59 AM (GMT -7)
I like Uceris foam and think it’s worth a try. It’s easy to hold in and feels soothing to me. Once I couldn’t hold it in and had to expel it pretty quickly. It’s really expensive and not usually covered tho so insurance might be a problem. I think there might be a generic budenoside foam available now tho.
Posted 1/5/2020 11:59 AM (GMT -7)
Yes, budesonide is the generic. Thanks guys. I may ask for it. I have osteoporosis from pred so I'm not supposed to take it anymore. I'm hesitant to even be taking this Uceris. I have no idea if more would be absorbed from the enema or pill.

Nssg: True. I don't really regret it that much. I was just thinking about all the time I've wasted on Humira now. But my GI didnt think increasing the Remi would do anything.
Posted 1/5/2020 12:04 PM (GMT -7)
I forgot to answer your question about the liquid steroid enemas. I've used them twice, about 6 years ago, before I had ever used prednisone. The first time they got me into remission and the second time they either made me worse or my flare just got worse despite them. It felt like they were making me worse. That doesnt really make sense though so who knows.
Posted 1/5/2020 2:09 PM (GMT -7)

ribbon23 said...
. I think it sometimes helps people with crohns more as they release in the small bowel. It's worth trying the enemas if you can get them. Sorry you are having such a bad time. I'm failing humira too x


They dont release in the small intestine. They release in the colon.

At least you had a lot of good months on Humira. I got nothing. I'm not impressed at all so far with biologics/immunosupressants. Anyway, I hope you get back into remission soon.
Posted 1/5/2020 3:05 PM (GMT -7)
I think budesonide releases earlier, depending on the coating, but uceris is coated to release later. If you had luck with steroid enemas once, those aren't a bad idea to try. I wouldn't imagine they made you worse that time. it was probably just the way things were headed. You should really get stool tests and make sure it's nothing in addition to IBD.
As great as Uceris is for mild, or even moderate inflammation, it did absolutely nothing for my more severe flare-ups. Of course, that's just one person's experience. I would definitely give it a try if I were in your shoes. Did you tell your GI you want to try xeljanz? I wonder if increasing the Humira is an option depending on the results. Would you be willing to try that? I didn't bother with Humira. I tried Simponi and it was pretty obvious it wasn't going to work for me. I had zero effect from any biologic. The only thing I got was debilitating joint pain and a positiveANA.
Posted 1/5/2020 3:17 PM (GMT -7)
Budesonide is what I have. It's the generic version of Uceris. I don't want to do the hydrocort enemas again because I got so much sicker last time. Thanks for the suggestions. I don't think it's an infection. I'd be way sicker if it was c diff. And I got symptoms right after I got off pred (well, a week after), so the timing suggests it's my UC. So I don't see the point in doing more stool tests. If my doctor wants them, I'll do them but he hasn't ordered any. Yep, I think that's the reason we're doing the bloodwork for Humira, to see if increasing the dose might work. I never really thought Humira would do anything.

No, I haven't told him yet, but at my last appointment, he said I could do Humira, Entyvio or Xeljanz. I bother him with enough messages and phone calls so I'll wait until the Humira bloodwork is back.

Someone at this in-person support group I went to yesterday said if you believe in your mind that a med will work, then it will, but if you have doubts or don't think it will work, then it won't! So, apparently all these meds not working is my fault! Lol. That was my first time going to that group and never will I go again. Everyone in the group said UC was caused by stress... They were all so uneducated. When I told them I was going to try Xeljanz next, they all said Entyvio worked after the very first infusion for them, that it was a "miracle drug." That isn't what my doctor and everyone here said, so I do not believe that one bit.

I'm not familiar with ANA. I Googled it. Does that just mean you got antibodies to the meds or something else?
Posted 1/5/2020 3:39 PM (GMT -7)
I am going to ask if I can stop taking this Delzicol too because it obviously doesn't help anymore. And 12 pills a day is a lot for something that I feel isn't doing anything. I guess I could be even worse without it? I don't know. Thoughts on that?
Posted 1/5/2020 5:48 PM (GMT -7)
I guess a positive stool test was always a pipedream for me. I thought, if there is just something to treat, I can treat it and move on!!! It never was though. Your logic is sound. It's probably the UC since you just stopped pred. I don't know if I would stop delzicol right now. I know it's a lot of pills, but you're about to transition drugs, it's probably a good idea to switch one thing at a time so you at least know for sure what helped and what hurt. I agree, those support group people sound like they were awful. That's the last thing you want to hear. "If you believe it, it works". Give me a break. I think I went into most things thinking the best and hoping for the best. I read tons of positive stories and thought "it could be me". It never was. I don't blame myself. it's probably just my genetic code. Positive ANA is an indication of lupus, which can be caused by biologics. I had awful joint pain that would keep me up all night, so it makes sense.
Posted 1/5/2020 6:54 PM (GMT -7)
Yeah, I always wish it was an infection, too. Lol. True, good thinking about the Delzicol. Yeah, it's kind of funny now thinking about some of the stuff some of them said yesterday, haha.

Today I wasn't bad other than in the morning, so I don't know what's going on. Kind of weird.

Oh wow, that would be scary to get lupus from them. These meds have so many scary side effects.

When you had your surgeries, do you remember how much weight you could lift when you went home? I was just wondering if I'd be able to pick up my cat if I get surgery.
Posted 1/5/2020 7:09 PM (GMT -7)
I think it was something like no more than 10 pounds for 6-8 weeks. They told me basically nothing heavier than a computer. I did a lot more than I should have but it can cause problems, like hernia, so it's not worth trying to do too much. I was fine thankfully. I did my own laundry and worked from home. I am sure I lifted my dog. You just have to be very careful because it will hurt and it can cause complications, especially before you're healed. I wouldn't worry about it right now, you have a ton of rx options. I am sure you have friends and family who would be able to help too! I had to have 3 steps, which means no lifting much for 6-8 weeks 3x. Most people are able to do 2 steps.
Posted 1/6/2020 8:16 AM (GMT -7)
> Does Uceris foam work better?
Well Uceris foam will treat just the left-side (rectum, sigmoid colon, and up to the splenic flexure bend from left side to horizontal). Uceris foam travels just as far as hydrocortisone enemas do, no real difference in affected area. I believe you are a pancolitis (whole large intestine) involvement, and if you still have inflammation higher-up than the splenic flexure then it would remain untreated unless you used an oral steroid, like Uceris or Entocort EC tablets.
Posted 1/6/2020 8:24 AM (GMT -7)
I actually feel quite a bit better today and yesterday was only really bad in the morning, so maybe it is helping this time. I'm on day 5 of it. Thanks everyone.
Posted 1/6/2020 9:11 AM (GMT -7)
Fingers crossed for you. You do need to figure out what you're going to use for maintenance if the humira isn't working. For me, the mornings were always the worst, and there are always good days and bad days, but I hope this good one is the start of a long remission! I didn't have a lot of help after my surgeries and it was hard but not impossible. I was off pain meds quickly so I could drive short distances. I also did things in small batches, like a little bit of laundry at a time. If you need to do it, you will work it out, but you aren't there yet so I wouldn't worry.
Posted 1/6/2020 11:09 AM (GMT -7)
Oh, I'm sure I'm not heading into remission. If anything, it's probably just the Uceris. Lol. But either way, I'm happy to get some relief. Thank you for all your input and support! Really appreciate it.
Posted 1/10/2020 12:23 PM (GMT -7)
Does anyone have any information about Uceris (oral) and bone density loss? I asked my pharmacist and have Googled it but couldn't find much and the pharmacist just said there is a risk but couldn't tell me anything more than that. I wish I had given Uceris more time in the past instead of being impatient and jumping right to prednisone. I'm not 100% but I'm so much better than I was, and I doubt it's the Humira finally kicking in (although I am at week 8 now and that would be great!).

I got my Humira antibody and levels blood test done yesterday so I should have those results sometime next week!
Posted 1/10/2020 2:08 PM (GMT -7)
Back of the paper napkin math:

Pred's 100% systematic, Uceris is 90% topical and 10% systematic. So uceris is 10% the bone loss of prednisone. It's small comparatively but not a zero. The intestine has blood vessels near the surface, and they invariably absorb some of anything topical that's applied to the surface..
Posted 1/10/2020 2:25 PM (GMT -7)
Ok, thank you! Maybe I'll stop taking it next week and see what happens. I'm celebrating my birthday this weekend and want to feel good for that. Lol.
Posted 1/10/2020 5:28 PM (GMT -7)
Happy birthday! At least I really hope it will be good.
Posted 1/11/2020 7:26 AM (GMT -7)
Thank you! smile

So, I found a document from the VA that has overviews of a lot of budesonide studies, and it did mention one that said they followed people for a year on 6 mg budesonide (I'm on 9 mg) and that no significant bone density was lost. But it looked like a fairly small study (around 100-150; can't remember right now), and if people came out of remission during the study, then they were no longer in the study, so I don't know how many people actually made it a year. Also, this document said prednisone has 92% bioavailability and Uceris has 10-20%. Anyway, so it seems like no one really knows the answer to my question for sure. Uceris has not been around that long. But I found that info. interesting so thought I'd share.
Posted 1/11/2020 7:45 AM (GMT -7)
Happy birthday, Sarah! Hopefully the Humira is starting to kick in. That would be the best gift ever!!

Uceris never worked that fast for me. It always took at least 2 weeks to see any improvement. Perhaps the combination is what is improving things for you.

Understandable that you are worried about bone loss, but the risk is so minimal with Uceris. Go slow with getting off of it so you don't end up so bad that you end up on the far far worse prednisone.

btw -- my birthday was last Sunday! smile
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