What should I be asking my Dr./next steps?

When is your next taper day? Are you considering going back on rectal meds?

I would give it some time. See how you are on Wednesday and let your GI give you options. If you're on pred and you're not feeling 100%, it's possible you tapered too quickly. Going from 40mg to 20mg is quite a jump. Most of us go at 5mg or 10mg decreases at the most. I was having trouble tapering off pred and I had to give in to 6mp. I waited a long time before making the decision, too long. I ended up being on pred for nearly a year. I hate to admit that, I always thought it would never happen to me but when faced with the decision to take 6mp or try to taper slower, I kept trying slower and slower without success. Eventually I realized there were only 2 options, 6mp or Remicade...

I tapered from 40 to 20. I was fine with that one but when. I went from 20 to 10 I started to have trouble. If you are already having bleeding you should probably try to get him to hold off tapering or only taper a little. I would hold off tapering until the blood stops if at all possible.

I would ask him what he thinks about the blood. Make sure he knows when you started the antibiotic. Ask about the rectal meds. Make sure you ask for copies of everything they do that day. What the plan is until the next appt. if there is anything you can do to make your treatment plan mor successful. Also if it is covered by your insurance you may want to ask for a Rx for VSL 3 DS. It is a probiotic designed for those with UC. It is really expensive but can help some people tremendously.

I didn't notice any improvement with probiotics and they were costing me a ton so I stopped taking them. You should look into copay assistance programs to help with the cost of medications. Canasa has a great program. Lialda also has a good copay assist.

That's not so good. Can you ask your GI to write you a script for morning and night? Maybe you can get enough for 2 months for the $110. I usually pick up 2 boxes for $40.

Yikes, that's expensive. I thought my $45 copay on 6MP (and $30 on Asacol HD) was expensive enough ...

I'd try hydrocortisone retention enemas, or rectal foam, depending on the results of your colonoscopy. The enemas got me out of a flare a few years ago--they basically got the inflammation down low enough for the Asacol to work. If you only have rectal inflammation, the foam works very well; it's much easier to retain than the enemas are, and it's a much smaller package. If you have more extensive inflammation, the retention enemas would work.

The benefit to the rectal meds would be that you could just avoid going back on oral pred.

I just had a sedated flex sig--there was no way that camera was going up there while I was conscious. I have a very hard time, psychologically, taking rectal meds, so I insisted on sedation. It went just fine :) Good luck! I hope you have good results.

Thanks so much everyone.

I'm on Align (once a day, not sure if that's enough or "right" pribiotic), I start B-12 shots today!!! I will look into L-glutamine. I have a call into the Dr. the nurse already said he will probably up your pred a bit, but that she would get back to me. Went 4 times already today - once with blood.

My cost for asacol hd 1s 130 after ins. I can't believe how utterly expensive these meds are for colitis; However my pred us only 7$. Sounds like your doc is tapering u way too fast. I was just diagnosed 3 months ago. after i belueved i was in rfmission i stopped taking ascol and tapered off of that, and while i despise meds I'm afraid I will have to go back on it. Now symptoms r back, I utterly hate this diseas and wish there were a cure or doctors had more definitive knowledge of it.

makes no sense to not have you on rectal meds
I'd strongly suggest retention enemas....

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