Prednisone questions

Hi everyone,
I’ve been an occasional lurker here for a while but going through a tough flare at the moment and thought it would be nice to hear from anyone with a similar experience…
I’ve had UC symptoms for 16 years, only diagnosed 6 years ago (distal colitis) and mostly up until the last year managed to come out of flares with dodgy advice from alternative practitioners around diet (basically starving myself). After a scope 4 weeks ago during this most recent bad flare, the inflammation was much worse than expected and the gastro dr put me straight on a course of prednisone (I was previously trying to manage with just pentasa enemas, which at that time seemed to be making things worse - Dr said it would have been too irritating on the level of inflammation seen during scope). I’m new to the drugs, and finally accepting the fact that I have a disease that needs to be managed and I can’t cure myself through a diet. It’s taken a while to get to this point!
Anyway, I’m 4 weeks into an 8 week prednisone taper (started at 40mg and now at 20) and due to see the Dr for a follow up next week and I guess talk about next steps for medication. The pred took a while to work - about 2 weeks for any bleeding to stop and then things started to feel like they were getting back to normal before I dropped to 20mg last week and diarrhoea has come back, passing mucus during the night again etc… very disheartening. I’m wondering about others’ experiences of tapering prednisone - would you usually start on something else before you taper too low? And have others had symptoms come back at this point in a taper? I think I’ll start back on the pentasa enemas. The whole process is so frustrating.
Sorry, much longer post than I intended!

Yes, usually they would start you on another medication at the same time as the prednisone. It's very common for symptoms to return while tapering off prednisone, especially if you aren't on any other medicines to keep things under control. I would call and leave a message for the doctor letting him know symptoms are starting to return and asking him what he advises. You should really be on both oral and rectal mesalamine at the very least to see if that works. You could ask him his thoughts on adding in oral mesalamine. Good luck and hope you get into remission soon.

P.S. I've never had a doctor tell me enemas would be too irritating even when I was in severe flares...

You need a maintenance med for sure. The prednisone is just a band-aid and will not get rid of the disease. It is normal for symptoms to recur as you taper, but this will keep happening without something else to hold you in a stable place. Some doctors like to start with "big guns" like Remicade or Humira, others are willing to add an oral 5ASA (mesalamine as is in pentasa) first. I would suggest you ask for some oral 5ASA's ASAP! Good luck.