Is there such a thing as weening off or tapering down on UC medications?

I have a new GI doctor. He says that I've been on the maximum dosage of Asacol HD 1600 mg 3x a day for awhile now and I should probably try to cut down the dosage due to possible side effects. BTW It took me two years to finally get the UC under good control. So I went from 4800mg a day to now taking 800 mg a day. 400 in the morning and 400 in the evening. I've been on this dosage for about three weeks. I've been having all kinds of problems from urgency to bleeding to watery stools to ACCIDENTS. Told him about it and he said to stay on 400 mgs twice a day because it takes time for your body to adjust. I'm wondering just how long does this take??? I'm back to taking Imodium because I have an hour ride to work. Does this sound right to anyone who really knows? I'm just upset because of all that I went through to finally having some sort of life without worrying about the close proximity of a toilet.

Wow. I had heard of people decreasing before. But they seemed to have been in remission for awhile. Also, I thought any type of taper was to see if symptoms would come back at a slightly lower dose (say 4800 down to 4000). If all goes well, taper a bit more. But wow...you had a huge drop.

Of course everything is out the door with prednisone. It has it's own set of rules.

This is one of those cases where your doctor is a total idiot. Asacol is not only a relatively safe drug to take but has few to no side effects in a lot of people, even at that high of a dose. If you hadn't had any side effects at the time he decided to taper, it is highly unlikely that you would have ever developed side effects. Sometimes it's effectiveness can diminish after long periods but what good is worrying about that if you taper down and your symptoms return? Your doctor has stupidly taken you from doing extremely well to being back to square one all over again. To me this is inexcusable incompetance. If it were me I would dump this doctor ASAP and get a new one. If he is this incompetant at this then how can you trust him to treat you at all, ever?

I think 4800mg to 800mg is a drastic dose change. If you were doing well on 4800mg, you should go back up until your stable and try going down by one pill at a time slowly. Before I was on 6mp, I was unable to taper my mesalamine dose at all because my symptoms would come back. I think it's pretty common for people to struggle with lowering the dose so don't get discouraged if your unable to do so. 2400mg is considered a maintenance dose, under that is very low. A lot of people take 4800mg for years without any issues.

Ok gary, I thought it was just me thinking this guy is an idiot. Yes I am having NO side effects, yes I WAS very controlled so why do you want me to taper almost down to nothing? What do you think is going to happen? I mean I'm no doctor, but common sense would tell you that a dosage that low is going to bring on some kind of symptoms. When my Asacol HD perscription needed authorization for refills, my insurance co wouldn't pay for HD Asacol (800 mg tabs) and I told him that and that's when he ordered the 400 mg tabs twice a day. When I picked up the script and read the bottle, I actually felt myself panic and thought it was a mistake. So I called him and he said no he wanted to taper me to that dose. Ok I went along with it...for three weeks and now it's hell. I'm not as bad as I was when I was first Dx'd, but I'm afraid I'm headed in that direction at this rate. So I called him yesterday to tell him things aren't going well at all and that's when he said stay with the 400mg 2x/day. OMG I'm beginning to think that because I am a new patient he wants to play with me. He told me to call him if I had any problems. So I did and he didn't help me out.

@ soystud: He's new because my husband's company got new insurance and my other GI guy wasn't in the network.

@ quincy: my UC is throughout the colon, but it seems worse on the left side. I mean I can't even lay on my left side when I sleep it triggers peristalsis and away I run...3,4,5 times a night.

I sure wish I didn't have to go through this all over again. I want to give him the benefit of the doubt, but it's unlikely to happen so I'm just going to call him and tell him. That's it. I'm NOT going through this again and I'm increasing the dose to at least 800 mg twice a day. I'm willing to try that dose because this one is obviously NOT working. If he isn't willing to work with me, then I'm going to find another doctor.

Oh and thank you everyone for your advice and suggestions. You don't really know how much I appreciate you guys and this forum.

You really need to go back to the full dose and stay on it until you are back to where you were. After that if you want to taper down a bit you can but I would take it really slow. Pretend it is predisone and taper back one pill at a time and see what happens each time.