tapered prednisone - halfway there but some bleeding - how to get past this?

i am hoping someone else has had this experience and successfully gotten past it and can pass on their knowledge to me!  during an extremely severe flare i was at 40 mg prednisone and have been very slowly tapering down.  i got down to 20 mg and there was some blood in my stool.  i started feeling worse.  i could tell things were headed south, so i added rowasa enemas to my protocol.  they seem to have helped some but not altogether fixed the problem.  i feel i am no longer worsening, but not improving either.....just stagnating!  i have stayed at 20 mg pred for a whole month now, each day hoping things will improve and i can taper more.  has this happened to anyone before, and if so, how did you get past it?  could the mercaptopurine be making me bleed?  what should i do?  my gi doc is no help, because he just wants me to taper the pred as fast as possible and then move on to remicade or surgery, which are not things i am willing to do.  thanks for any advice.

i haven't tried rectal steroids...my doc is so against steroids period i know he will say no way.  he is mad that i have stayed on the steroids this long, but i tried tapering his way (fast) and ended up back at square one again, having to start at 40 mg all over again!  i have been at a theraputic dose of 6mp since May, so about 4 months.  i know it can take up to 6 months for it to kick in, so i am hoping it will, but i am beginning to lose hope:(  i stopped taking 5asas when my terrible flare started, because they seemed to be making everything worse.  i asked the doc at the last appt whether it might be beneficial to try them again, and he said probably not.  to tell u the truth, i am a bit scared to try them again, being that they made things worse.  however, they did help in the past.  it's weird.  i wonder if anyone has tried 5 asas and they helped, then didn't help, and then helped again?

boy, it sounds like we do have a similar situation!  thanks so much for your reply...it helps to hear other people's experiences.  i hope you get better and stay better too!  i might give asacol another try.  i feel like it was making things worse at one point, but i also felt that way with the rowasa, and now i think it's helping me again.  i just want to get off of this awful pred - i am so swollen up and gross!  i want my life back!

oooh, i hope u can taper successfully.  i'll keep my fingers crossed!  i have tried lialda, asacol, asacol hd, colazol (gave me D), apriso, sulfasalazine.  like i said, this last bad flare the 5asas almost seemed to make things worse.  i am so uncertain what to do.  i guess maybe i will give it another try.  i am on 75 mg mercaptopurine, which is similar to 6mp.  i know i am in a theraputic level because i had a prometheus blood test done, which told me so.  however, that just means i have enough med in my system for it to possibly be beneficial; it doesn't mean it's necessarily helping!  i wish it was!  i am staying on it in case it is helping.  if i were u i would question my doc further about getting in a theraputic range of 6mp.  i probably wouldn't stop it now because it sounds like u are doing better...why upset the apple cart, right?!  yes, let's keep in touch.  if u want, feel free to email me (look up my email on my profile) if not that's ok too. take care!

yes, i had stool tests at the onset of this flare, which was a year and a half ago!!!!  hard to believe...my life is just flying by.  do you think the antibiotic is what improved your condition?  what antibiotic were you on?  i tried xifaxan when i was at my worst, but it didn't help, although at that point nothing seemed to help.  pred was the only thing that made a dent, and it took a lot longer to work, and wasn't as effective as my other experiences w/pred.  have u been on pred previously?  in answer to your question, my flare now is not as bad as it was a year and a half ago, but i don't feel ok tapering at this point.  do u think i should?  i go about 2-3 times a day (somethimes 4) and am sore afterward, and there is blood in the stool.  but the stool is usually formed.  previously, not to be gross, it was like going buckets of blood:(  i definitely don't want to go back to that.  but i don't want to be on pred forever.  i look like a freak, and as u probably know, pred makes you feel bad in other ways.    i too have tried diet changes.  no luck.  i am thinking about trying it again out of desperation.  i already eat healthy, but have not cut out gluten/sugar altogether.  have you tried vitamin e enemas ever?  i read some people have luck w/that.  oh, what to do. well, at least it sounds like you are on the upswing!  here's hoping!

Notsosicklygirl and Kate22 sorry I am male and not female for you to feel more comfortable with but when in dire straits I changed from Asacol which I found had stopped working to Pentasa 1000 mg 3 times a day then 1500 mg 3 times a day and the change was almost immediately obvious. The blood stopped and the D stopped shortly after. My only problem then was to keep regulating my dose of Pentasa as I would start to get constipated so I would cut back, once I would feel my stool getting loser I would increase my dose again until I got to a point where I actually went into a remission for some months taking absolutely nothing. I was rudely awakened back to reality when the bowel was bright red once again. I got totally depressed once again and had to go back to prednezone at 60 mg and Pentasa at 1500 mg 3 times a day, once again the blood has stopped and stepped down my Prednezone only to have to go through the procedure 4 times to get rid of the red and 6 months later have started started back on Salofalk enemas at 4g/ 100 ml. Happily after only after 4 treatments the D has slowed considerably but am getting very bloated and have new script for Pentasa enemas, wish me luck. For both of you never stop taking your Asacol ever unless you find it not working then only stop when you have Pentasa in your hand to replace it. I was taking 6 Asacol twice a day when it let me down and don't be afraid to go with the Enimas they do travel a long long way up. Treating from both ends is an extremely good way to go if a flare is taking a long time to settle down. Wishing you both the very best and remission is always a reality, I pray you get to see it.
Richard