Uceris is the bomb on symptoms- but it's definitely systemic on me

Thanks for posting this; I wish everyone would be a bit more cautious in embracing this new drug, which is still a steroid. I was on Entocort for an extended period, and was assured it was safe because it was "non-systemic." I ended up with diabetes, osteoporosis and avascular necrosis which forever changed my shoulder function.

Entocort was new when I took it and was the "wonder drug" of that day. It turned out to be a wolf in sheep's clothing. Uceris is the same drug, just with a different release mechanism. Sometimes steroids are necessary, but never believe any steroid is safe or won't cause life-changing side effects.

@hateUC- well, I experimented going off it for one day and it took me a couple days back on it to recover from the flary feelings and greater stool frequency whiplash... Ironically, my pancolitis shows up as mild all the time in endoscopies, but , I guess because I am totally intolerant and/or unresponsive to basically every non steroidal IBD drug, even with the scores of natural therapies and dietary modifications I have made, that mild but refractory disease has over the years turned my colon into a "lead pipe" chute, perpetually sore. It will be chucked out shortly though.

I agree totally- they should really make uceris in 3 mg doses so one can tailor the drug in cases where just a slight dampening is needed.

Pro: Very sorry to here this,it has been a long long fight.

As a last ditch effort ask the doc about camostat ,off label or not.

This takes awhile to load. Long  forgotten case study.

Old Mike

https://www.jstage.jst.go.jp/article/internalmedicine1992/32/4/32_4_350/_pdf

I have to wonder though, if the systemic effects you see are due to the recent prednisone use. I've been on it just about 10 days now, & have not noticed any systemic effects. I have not had to use prednisone itself since.... jeez... 3 years ago now? And I was on pred for months & months, & did have horrible systemic effects. I think too, since it's a flat 8 week course, any systemic effects are likely to be mild- even a high dose of pred, if it's a strict 8 week taper will have fairly minimal systemic effects. That said- the first week I was in UC free heaven! Now though, it seems to have backed off a bit, the Uceris. I'm still having firm stools, less urgency, no bleeding. But the past 2 days I have been going to the bathroom non-stop! I've been eating more too, since I'm feeling better, so it could be attributed to that. My colon also is pretty worn out, it's basically a storage tank- when it gets filled up, I'm in the bathroom passing TONS of stool. Otherwise I'm sort of constipated. We'll see- I'm gonna stick it out, see how the next 6 weeks go!

I would steer clear of any steroid for UC maintenance. Just my 2 cents. Often times you don't see the destruction that steroids have caused, until you are completely off the drug. As for surgery, anyone who has a prednsione history that dates back one year prior to surgery, will be given a prednsione boost in surgery. To think that steroids require a year of no use, to be declared, steroid free for surgery, is frightening in itself.

Sue

suebear said...
I would steer clear of any steroid for UC maintenance. Just my 2 cents. Often times you don't see the destruction that steroids have caused, until you are completely off the drug. As for surgery, anyone who has a prednsione history that dates back one year prior to surgery, will be given a prednsione boost in surgery. To think that steroids require a year of no use, to be declared, steroid free for surgery, is frightening in itself.

Sue

Right. I was just reading although our adrenals make 8mg per day they also can flex to 10 x that amount or 80mg per day. Once tapered completely off prednisone it says you may still require oral consumption of prednisone over the next 12 months due to very stressful days or surgery or trauma etc.

Makes sense that although the adrenals are not fully suppressed and are producing they do not yet have that fully elastic effect to go to 10x and require supplementation from time to time.

Just happy I got down to 15 mg in time for angiogram for hand last week and no internal tears from 'stiff arteries' but having to go back up to 20mg with procardia is absolutely the pits right now. Feels like I am at zero. Went from sleeping 2 hours to sleeping 10 and feeling lousy. Need to call a new GI doc and see about getting Uceris for smooth taper down since this one refuses to write any script other than Humira.

Adding glandulars today, anything to get energy level back.