Coming off steroids and UC symptoms getting worse

[DLGJ]

Hi, I was diagnosed with UC in December, I have been on a 6 weeks reducing course of steroids, my symptoms didn’t go but improved. I still have the urgency on a morning, however I have 1 week of steroids and I find I’m getting worse again. What would my next options be? I do have another gastro appointment but it’s not till the end of feb. I’m not sure if this is normal or not

[FRreedman]

Phone up IBD team, or contact GP, they will probably extend the steroid course until you go back.

[willow24 Administrator]

You may need to extend steroids or your consultant may think about other options like the biologics. Phone consultants secretary to see if appointment can be brought forward. Also do you have access to ibd nurse? They could perhaps increase steroids again until your app with consultant

[Hidden]

My son was also diagnosed with UC in Dec 2019 and in hospital had IV steroids and coming off oral steroids after. He was started on biological (Remicade), it is my understanding that you need a medicine other than steroids for maintenance. Did the IBD team share anything on this subject to you or are you supposed to just come off the steroids and have no other medicine going forward? Call your IBD team / GI doctor as soon as possible.

[DLGJ]

I have pentasa to take for life. I went private so I’ve never met or spoke to any one other than the gastro specialist at the private hospital. Il give him a call and see if I can move my appointment up x

[afs7000]

It's likely the consultant will move you to NHS - I found myself the private sector isn't geared to deal with chronic illnesses, next step will be something like azathioprine.

In the interim speak with the private consultant who will probably prescribe more steroids