Steriods havent worked - i'm at a complete loss - pls help!!!!

Hi everyone,

Well i've been diagnosed with UC for over 2 yrs now. Unfortunately i have pan-colitis. The dr started me on Asacol x 3 per day but that didnt do anything to alleviate my symptoms. about 12 weeks ago the decision was made to put me on Steriods. I began a tapered course of Prednisolone, starting at 40mg for 4 weeks and tapering down. I have one more week at 5mg left. However, although i had the first solid stools, it only lasted a few days and then went back to my usual diarrhea.

I have just been for a follow up colonoscopy yesterday and the GI confirmed that my colon is still red and inflamed. Basically i have had a very poor response to steriods. I was under the impression that they mostly did a pretty good job in getting people into remission.

So now, we is suggesting i try a foam enema. Although i dont believe that will work as i have pan colitis and from what i've read it only works for the lower parts of the colon. If that fails, which no doubt it will, then he wants to put me on Azathiopine, which is an immunosuppresant. But i cannot see why that would work if the steriods havent worked??

Has anyone been in a similar position - having tried steriods and not worked, and then gone onto Azathiopine?

After that, he has said that we will have to begin to consider surgery. Although i have pan colitis he said the grade of my condition (from looking at the colonoscopy) is a grade 1. Grade 1 being the least worst and Grade 5 being the worst. Also, i am not aneamic or loosing any blood or seem to be loosing any protiens yet, so surgey would seem a little drastic at this point.

I'm fed up and frustrated and was hoping maybe some of you may have advice from being in a similar position?

Thanking you in advance

Delby

Often when steroids don't work azathioprione is seen as one of the next options; so what your doctor is recommending is not out of the ordinary.

However, I don't understand why doctors don't give more info on how to taper off prednisone. If your D comes back then it helps to stop tapering and instead increase your dosage, and then taper down at a slower rate. Instead they often only tell you to taper down. If you're going to use such a strong drug then better guidance is called for, or you need to ask more questions and read up on your options too.

Steroid foam may be worth a try. You could even try using the foam twice a day to try and get things under control asap. Also, if you decide to take azathioprine, it can take a coupe of months to kick in, so the steroid enema might help reduce the severity of symptoms till then. Hope you're better soon.

I think you have a few options before trying azathriopine.

First, have you been using ANY rectal meds? I started off just on Asacol (12 pills/day split over 3 doses), but a week later my doctor added Rowasa enemas. Even though I have pancolitis, they helped a lot as the Asacol doesn't necessarily make it all the way to the rectum, and if that's not healed, you can still be having really bad symptoms. Don't think that rectal meds won't work just because they don't reach that far into the colon...studies have shown that they are much more effective at healing inflammation than oral meds are. With Asacol and Rowasa, I was getting to remission, but then I got a tummy bug that really set me back. So, I did pred (a quick course by traditional standards) and it worked well for me.

Second, I think you could try a higher starting dose of pred (60mg) and then do a slower taper. Sometimes it takes that high of a starting dose to get rid of the inflammation.

There is a good chance the azathriopine will work even though the prednisone didn't.

Also, I would definitely talk to your doctor about Remicade before talking about surgery.

It can take a few months for the Azathioprine to kick in so don't get discouraged if it doesn't work right away.

I just started Imuran (Azathioprine) and am hoping it works out for me as well. I am currently steroid dependent.