Do you have UC and use Remicade?

Are there UC patients out there using remicade? I know it is very effective for Crohn's patients, and I am curious about UC patients' experiences with it? Also, at what point did you decide to use Remicade (i.e. what other steps did you take first? how bad were your symptoms when you decided to switch?) I am trying to decide whether or not to make the switch.

Currently, I am on 4.8g of Lialda and 75 mg of 6-MP, which I have been taking consistently for the past 7 months with little improvement. I also take - though less consistently - a multivitamin, probiotic (VSL#3), iron pill (Vitron C), and the Rowasa enemas (which I despise and can't seem to keep in me or motivate myself to use despite even feeling a little better when I use them, which should be the most effective form of positive reinforcement out there!). Oh, and I use imodium from time to time, but I am also not consistent with that b/c I dislike yet another pill and feel like it is just a bandaid drug.

Over the past year, I have had diarhhea, painful gas, bleeding, urgency (resulting in several accidents), nauseau, and cramping. Fortunately, I have been able to continue working and have never been hospitalized so I recognize I am among the lucky ones. However, I am losing patience with this disease, and at the risk of sounding over dramatic, I feel like UC has robbed part of life from me - I am no longer able to be very physically active although I do try to walk and do yoga when I feel well enough. I have given up running, something which always made me happy. I have sunk deep into my "homebody ways", limiting social activity to close friends or family, if at all.(I won't go out to eat, for example, for fear of having an accident in public). I feel tired most of the time, and recently, I feel like my productivity at work is decreasing..

Given my lack of improvement over the past year and my inability to be consistent with the enemas and supplements, I am considering starting on Remicade. (My doctor has been supportive of a change for some time now, and has offered Remicade or experimental studies as the next options, since - given my blood counts - increasing my 6-MP is not an option). The problem is I keep questioning, maybe if I had been more consistent with the enemas, or maybe if I gave the probiotic more time, or maybe if I took the imodium twice a day every day, I would be better. In other words, maybe it's my fault I am not getting well. However, even when I went a month doing everything "right", I still was not well enough, and per my doctor, my inflammation is higher than the enema can reach and their is no scientific evidence that the supplements will make me better (although I certainly believe they are worth a shot).

So, I think I am ready to give Remicade a try (though I have been saying that for awhile now), but I am scared. I am scared I will have an allergic reaction to the infusion (even though I know they premedicate). I am scared that I am committing to an invasive treatment for life (I have read your body can produce antibodies to the medicine if you go off it for some time). I am scared I will lose my job one day and not have health insurance to continue the medicine. And most of all, I am scared I am putting my body at risk simply because I have failed at taking good enough care of myself.

What have been your experiences with Remicade? When did you decide to switch?

Hi,
I tried it and it didn't work for me. I had severe UC and the Remicade was really my last resort. I ended up having J pouch surgery which has been the best thing I ever could have done. I just couldn't get my UC under control with meds and I was very sick...surgery saved me.

i tried it, it worked for a while, then it failed, and things went bad, fast!
However i was told my a few different GI's from a few different practices, i was in the hospital at the time, and you know different ones come in and make rounds, that you need to be on something like 6mp or immuran to keep your body from rejecting it, so i don't know if that's an option for you, or maybe they have found thats not necessary anymore.

anyway, i started it in august, it worked great until november, then it started getting a little worse, they upped it, it didn't help, by feb i was in horrible shape, in april i had surgery and am all better and life is great! that was almost 4 years ago. My only thought on remi, i wish i hadn't done it. I went into the GI and asked for surgery, he suggested remi, i didn't want it but against my better judgement, i did it, they put me in the hospital so they could start it right away, cause i was in bad shape already.

I was on it for 5 1/2 years with no problems. It healed the ulcers in my colon and I'm currently in remission, and my last c-scope showed no ulcers or polyps. So it did the job in that aspect. I'm living life! I did have to stop because of a reaction; I could have continued but I figured it did the job it was supposed to and my doc and I decided to just continue with maintenance meds.

I agree; it's so tough to assess other's situations, and as we say on here, every one is so different in how they react to meds. I can only tell you that I feel fortunate that I was one person who responded well to the Remicade with no immediate reactions. I was so desperate to have my life back, and had such stressful situations at the time, I was grateful to try anything. And if surgery was the only route left, that was to be. Whatever your decision, you are well supported on these forums. Take care!

Unfortunatley for those who have severe UC that cannot be controlled with meds, surgery is inevitable. I know it is a scary thing to think about but I had 6 years of pain and anguish with this darn disease and only about 1 month of real discomfort from surgery. I just wish I had surgery sooner. I would have saved myself and family a lot of grief not to mention money! Also, it's so nice not to have to take those nasty drugs anymore. Best wishes to you.

I was diagnosed with UC in october of 2006 and after taking prednisone for a while went into remission with maintenance meds for 4 years, this December though i had a massive flare up and prednisone did literally nothing. I was admitted to the hospital where they tried using high doses of IV steroids for a week, but again any changes were very minimal. The doctor told me that usually if prednisone didnt work they would try Imuran, but he said that takes a while to work and i did not have the time to wait, i was in really really bad shape. So he put me on remicade, and i had read all kinds of things that scared me about it, but i couldnt deal with the pain and hospital anymore so i just went with it. I cant in anyway claim to be overly experienced with it, im going for my third dose this week, but i do know that within three days of my first dose the bleeding had stopped, and within a weak the cramps were minimal. I feel good now, little pain in abdomen but doc says that could be scarring or inflamation that might fade, overall ive had absolutely no bad side effects and no regrets from remicade, and would recommend giving it a try. Some people it works for, some it doesnt, but the only way to find out is to try it. I felt the same way, hoping that a change in my diet or supplements could help, but my doctor told me that while yes diet and how you take care of yourself can play a huge role in how you feel during a flare, changing it is not going to be able to get you out of a severe one, or in the reverse, cause one. I trusted my doctor, and so far i have absolutely nothing bad to say about remicade, even the infusions arnt bad gives me time to just sit and relax, either way i hope that whatever you decide works out for you, best of luck!

I was diagnosed with severe uc throughout my whole colon in March of 2009. I tried asacol and lialda, I'm allergic to both and all 5 asa's and then I tried imuran, allergic to that also. I was put on pred for a month in june 2009 and was fine on that. As soon as I went off I flared right away. I was put back on pred while I started the remicade I started the remicade in July 2009 and went off the pred in Nov. 2009. The pred was horrible long term. I gained 50 pounds and went loney. lol I have been fine since. I just had a scope in Jan. 2011 and it showed that my colon is healed on the left side completely and that my right side just has mild inflammation. I get a rash, joint pain, and heart burn from the remicade. The joint pain has gotten worse as the years go on. I don't want to go off it though. I was horrible before it. I couldn't go anywhere or do anything. So here I am. I take zyrtex and prilosec for the side effects. I was upped to 7.5 kg every eight weeks in August 2010. I was on 5 kg every eight weeks before that. Remicade scares me and so do the side effects but I can't live with how I was before the remicade. I will try humira when this stops working and then surgery if nothing else is out there. Good luck. It has helped me alot.

I've been on Remicade for five years, in clinical remission for five years and in microscopic remission for at least three years. I really had no choice except Remi or surgery as I'd been flaring ever since my diagnosis five years earlier.

Remicade was the best and worst thing that happened to me. It helped bring me into remission when nothing else worked. If I could go back and time and do it over again, I would do it differently. Remicade certainly helped bring down the inflammation of my colon but was very destructive to the rest of my body. I would not go on it again and would have opted for surgery. That being said..I am in remission without Remicade and have managed to keep my colon and return to a pretty good level of health. I manage my UC with diet, supplements and probiotics.

I want to thank each one of you for taking the time to reply to my post. I still don't know if I am ready for Remicaide, but your comments have motivated me to be consistent with my supplements and have given me plenty to consider and think about. Please continue to share your experiences with Remicaide....I am learning so much from you!