Not sure what's happening...mmm

[shooty]

So, I'm down to 20mg of the pred, still on asacol and the symptoms are coming back. Pain in lower right abdomen, stools getting loser. Just feel enflamed but not really sick with it, still going out, eating, no blood, etc.

Anyway, I spoke with the GI nurse and they are talking about doing MRI scans now to see what's what and possibly a colonoscopy. They feel that after the results of my september sigmoidography showing little crohns activity in the lower bowel that it might be best to look further up.

So, I'm happy that they intend to find out what exaactly is going on so they can treat me, but wouldn't it have been better to do that 2 months ago rather that put me on, what appears to have been, a pointless course of preds. The stuffs bad enough when you need it, but when you probably could've gotten away with not having it then it makes it all the worse.

Anyway, to late now, 3 weeks of tapering then hopefully a clean break. Then with any luck they'll find out what needs taking, or doing long term.

I think these GI's are just pissing in the wind sometimes.

 

[CodeBrown]

It's definitely a complicated process - hang in there and educate yourself as best you can.

 

[ameslouise]

Hi Shooty - Sorry you're not feeling so great. If you read around all the Prednisone threads, you'll see that 20 mg is the breaking point for a lot of people - where symptoms start to come back and pred withdrawal symptoms can start to kick in for some folks.

Not sure how long you've been on it, but sometimes the taper has to go slower once you reach 20 mg. Sometimes it's 2.5 mg at a time instead of 5. Just be sure to report to your doc all that's going on. Even so - sometimes you need to listen to your own bod. I have taken control of my own pred taper. Even though it's taking FOREVER, I am doing okay coming down only 1 mg per week. Better to come off slowly, IMO, than to risk having to go back up again.

Good luck with your tests. - Amy

 

[ChefShazzy]

I agree with Amy; at around 20mg of prednisone is when I notice symptoms coming back. A slower taper may help, you may also need a maintenance medication like Imuran, 6MP, Methotrexate or a biologic. It could help right away, or you might be stuck with a long trial-and-error type run. Asacol might not be strong enough for you. In the past, I was able to successfully taper off of pred, but within a few months I would flare again. I've been given the Imuran and 6MP with no improvements, I am now on Methortrexate and Humira and seem to be maintaining without any pred. Still have the pred weight sticking around though!!

 

[shooty]

Well the GI nurse rang me this morning and they are going to do a colonoscopy and take some biopsies. They feel the problem could be further up and that I may, after 10 years, not have crohns but rather UC. They basically have no idea.

I'm to continue with the pred taper, 5mg per week and stick with the asacol. If symptoms get worse then ring them.

At least they are looking at it properly now but it'll be 2 months before my colonoscopy. So 4 weeks left on pred, leaves me 4-5 weeks on asacol that obviously isn't working. I'm sceptical.