long-term Remicade users

How often do you get Remicade infusions? I started on Remicade in Aug '08. I only reached full remission for a couple of weeks in October - but then I was stupid and enjoyed some wine two weekends in a row, and that flared me up again. I haven't been fully in remission since. And for the past few infusions I've passed blood for the last few weeks before my Remicade appt.

Before chaging the frequency of my infusions, my dr incrased from 5mg/kg to 7.5mg/kg. So now we still have the option of increasing the dose as well as increasing my frequency. I am feeling better this time around. I still pass blood once in a while, but nothing terrible yet. And I still go to the bathroom several times a day with great urgency. But I'm maintaining my healthy weight and I am functioning fine. Even my dr said that I may not lose all of my symptoms, but as long as we can keep them in check and stop any bleeding, then that can be seen as success.

I think if I maxed out on the dose and frequency though and still had major problems, I would consider a new drug (Humira maybe) or even surgery.

I do the highest dose every 4 weeks and I am okay right now but not perfect- I can still work and that is what is important to me right now.

Have you tried adding enemas or suppositories to your routine?  That is what helped me achieve remission when I first started Remicade.

I just had my third infusion yesterday and I'm definitely not in remission, though I had been feeling better. No blood or anything... But three days before my appointment I felt really sick; I thought it was because I ate some Reese's cups before bed and nothing else on Monday. Tuesday I felt really nauseous but couldn't go to the bathroom. Wednesday had a few bathroom trips but nothing too bad. Yesterday everything was COMPLETELY liquid- and urgent. But not the painful kind of urgent, just the "I'm okay... OMG GET TO THE BATHROOM NOW" and almost not making it kind of thing. Today it's a little bit less liquid but there is some blood. And it's a yellowish color with a bubbly oily film on the water?? Soo weird.
I'm hoping I start feeling better again but I have no idea what's going on. Still hoping that Remicade is my "miracle drug" too but not getting my hopes too high.

Anyway, if I were on Remicade for that long and it wasn't working, I would probably start thinking surgery, yes. I think I would probably give Humira a try only because I'm a procrastinator and am still a little scared of surgery, but I think you will know when you've had enough.

I would try alternative treatments, such as fecal transplantation, Probiotics, vitamins, diet, stress management, change in living environment (such as moving to a warmer climate)... before resorting to surgery. And if these didn't work, then yes I would get surgery. It would be a really hard decision to make, because I might find something that worked and put me in remission just like that. And, therefore, I wouldn't have needed the surgery. But long-term use of any of the Colitis medications isn't good for the body. In many cases, the medicines do more harm than having the colon taken out.

I only get a few weeks of effect from Remi before it turns off like a light switch.... so my dose is going to be upped to the 10 mg/kg the next infusion. Been on it 5 months now. I am being told that if Remicade fails even at the higher dose we will probably try Humira and some other biologic but I am not keen to try any more of this garbage. Right now my philosophy is to buy myself time to try a few other last ditch things to avoid the knife- eg fecal infusions. Getting my girlfriend's stool and blood tests set up- around $1000 worth- and if she shows up clean enough, I will be getting intimate in a new way (sharing her feces) and see if that does the trick! I am no longer as afraid of surgery as I used to be but am still determined to try every last thing before I "destroy the village in order to save it."

It has kept me in a solid remission since about a month after starting it. But you have to remember, like most of the treatments for UC, it's not effective for everyone. I think the manufacturer says that you will likely reach maximum benefit by the fifth infusion; if it isn't working by then, it's time to consider other alternatives.

Part of the problem is that right now, with Humira not yet approved and so many insurances not covering it, Remicade is about the final option. A lot of people prefer to continue with it rather than go to surgery if the Remi is helping at all.

Eva Lou, perhaps you should start planning a time frame for this surgery if you are leaning that way. Would your employer give you the time, if so when?, is there some thing you need to get done before you put yourself out of circulation for an extended period of time as you rcover, from what I understand it is a 2 step process tha could take a year. How about the fact that the longer you wait, the longer you are exposed to these toxic drugs, and there is the age factor for healing. Lastly, what affect will this have on your support system, the people who would help you.
Just my thoughts, as I have contemplated this for my daughter wo was diagnosed 1 year ago. Rami seems to be working for now. But how does one know that you are in remission? with a colonoscopy? I get the part where you stopped having symptoms, but if you are taking medicine how do you know that you can stop? Anyway, good luck in youe future.