Has anyone else stopped steroids at this point?

Hello,

I have been on a decreasing course of budesonide/uceris for about 4 months and the hospital want me to stop in the next week. I am still going to the bathroom 6 times a day, have some bleeding on around 1 BM a day and some general pain when I need to go. My BM in the morning is watery. possibly made worse by using enemas which I don't think I am absorbing well.

I am scared my symptoms are not well controlled. I am wondering if maybe the steroids are only meant to take you so far before they are stopped. I am improved on when I started the course as the pain and bleeding then was awful.

I am not swapping on to a new maintenance medication- still asacol at the maximum dose and otherwise using suppositories and half an enema a night (because feel like I am just holding liquid until the morning and full enema is too uncomfortable).

I have been using slippery elm which has reduced bleeding over the last week and reduced how watery my other BMs are.

Thanks

Hi iPoop, I agree, I am worried I will get worse and scared that the steroids are just going to stop now. The consultant told me to be positive but it is not as if my flare is controlled at the moment.

Absolutely no discussion on new maintenance meds. Just going back to asacol maximum dose

My personal opinion is that some people tolerate steroids better than others and for them going longer is less risky. For some people they get into remission before tapering and then rely on their maintenance med. For others they are steroid dependent, and will never maintain remission w/o steroids, and they need stronger meds. Some folks in the middle get part-way to remission before tapering, and their maintenance med gets a foothold and then brings them the rest of the way.

It is a balance between the risk/cost of staying on the steroid longer and the benefit of getting more completely into remission before tapering.

But, generally if you are partway to remission and your regular/maintenance med cannot control things and the inflammation just springs back - this is mostly a sign that you need a stronger maintenance med, and not a sign you tapered too soon.

good luck