Remicade update - responding but still unable to taper pred

Probiotic, after two infusions the Remi may well not gave shown its full effect yet. I'd suggest trying the taper again after another infusion or two. Are you on the usual induction schedule of infusions at 0, 2 and 6 weeks?

I have been on Remi for 8 months now. When I started I was at 15mg pred with slight symptoms, and if I went below that I would flare. The intial response was ok, and I was hell bent on getting off of steroids. They tried 6mp with it, but it made me toxic at low levels so they discontinued that treatment. Now, the remi every weeks makes me sicker than a dog for a week post infusion but other 5 weeks...no pred.....are not bad but not remission. The biggest comlaint I have are the middle of the night mucus events...no stool or blood...just mucus....stools are formed most days, but I still have very low rectal inflammatin I guess causing the mucus...it is really maddening to go througha whole day with one or teo formed bowel movements and then have to get up three times a night to go and let the mucus out.....I wish ther was a magic bullet for it but I have tried a bunch of thingsw to no avail....the docs say it might be IBS.....I keep telling them that IBS would not wake me up in the middle of the night.....I have tried an antispasmodic the last two nights to no avail...oh the gas comes at night to......by 3 am its over and I usually sleep until 6 sometimes. It is a mind crushing experience to get so close but yet be so far...the pictures say my colon is 95% healed and that whatever I have is termed mild....If I could take the 5asa that would be nice, but they make me worse....I am at wits end but Im really not that sick so I guess I have that to be thankful for......its been a weird experience for my docs as well as they never have someone get worse the week after remi but i do.....so they are probably going to forgo the next infusion to see what happens....Last time I had not seen blood in ttwo weeks and was almost sleeping throughthe night and the morning after my remi it looked like the alamo in the toilet...too strange and too coincidental docs say......so we start over....been over a year in this flare....like I said not sick sick most days...just the constant reminder...I think the brain can be so impacted ny this disease its hard to shake sometimes....good luck

I started Remicade in July of 2007 and I wasn't able to successfully taper off the Prednisone until April 2008 -- just this past April. I was responding to the Remicade, but I had to shorten the interval between infusions from eight weeks to six weeks. If our steroid dependent it can a long time to taper. Go very slowly and try to be patient.
Meesh

Maybe that was my problem. I had three doses of remicade and was perfect so I tapered my pred quickly and in a week I started having problems. Now I am in the worst flair I have ever had. They moved my remicade up two weeks and doubled my dose so hopefully that will help. I am trying to avoid going back on pred. I was on it for 7 months of the last year. It just isn't safe to use that long.

Sorry, no experience in Remicade here.

But the advice I got from both my GI and my endocrinologist was that splitting up prednisone doses is markedly more likely to produce adrenal suppression, which is very, very bad. Their recommendation was to take all the prednisone in one dose at the beginning of the day, when it more closely matches the natural cortisone surge. I did have to take medication for anxiety for part of that time, which stank, but I seem to have gotten out of it without adrenal problems, so I'm satisfied. If folks here are splitting doses without consulting with an endocrinologist first, I'd urge them to check with one.

Probiotic, when I was tapering prednisone, I experienced exacerbation of symptoms at every dose reduction, and it almost always settled out after a couple of days. It may be worth checking in with your GI or his/her nurse to ask about whether your symptoms with the taper are within that normal range, or whether they really call for upping the dose again.

Hi landcruiser... I wish I could say DMSO has helped me alot, but instead, what it has seeemd to do is provide some short term, temprary relief when flares are especially painful. Though I really have to slather it on to the point of causing some s;uburn' like rash on my belly, as well as avery foul (a sort of mettalic rottne fish smell!) breath effect about 8 hours after application, it does privide a few hours of pain reduction in the gut. Perhaps for that, acupuncture would be more effective. But I need to find something to add to remnicade, it seems, which is not enough. Or else, I need to put up with a much slower pred taper, which is tough when one has been pred dependent for a long time.