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Questions about Remicade

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Ulcerative Colitis
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Posted 6/17/2011 1:51 AM (GMT 0)
I am hoping I can get some feedback from you all regarding my situation.

I have been fighting a flare up for 6 months. I have just tapered off prednisone for the second time and developed another flare up about 10 days ago. I have been on Colazal for the past few years and before this flare up was in full remission for about 20 months.

My physician and I spoke at length yesterday about my symptoms. This current time, I have a tremendous amount of mucus and a fair amount of blood. Most of the time when I actually have a bowel movement, I have mostly solid stools (at least solid for me). With this in mind, the doctor thinks that perhaps my colitis has moved distally and is now closer to my rectum. In order to hold off on another round of roids, he has put me on Canasa, which I took years ago when I had Ulcerative Proctitis. I am having a scope done in 2 weeks as it is ironically also time for my check up.

My question now comes in as to the possibility of Imuran or Remicade. The doctor is afraid that I am now becoming steroid dependent, and I have tried every other drug on the market (asacol, apriso, sulfasalazine, enemas, suppositories, you name it). I am scared of the potential side effects of the immune suppressing drugs and my doctor wants me to think long and hard before I try them if necessary. I am so tired of steroids and feeling sick, as I have battled UC for almost 11 years now. I hope a forum of my peers who understand my mental status and predicament can help me with this. Thanks.
Posted 6/17/2011 2:14 AM (GMT 0)
Hey geeter, the decision you make is not an easy one and not to be made without a lot of thought but I can tell you, if I had to go back, I would have gotten on 6mp sooner to avoid being on prednisone for as long as I was. I had a lot of negative side effects from prednisone and I regret trying medication after medication when none of them were enough to get me off prednisone. My GI did mention Remicade instead of 6mp but 6mp seemed like an easier solution at the time. She said it was just one pill a day. For me, 6mp hasn't been a simple solution, I've had a lot of problems with the medication and had to have freuqent blood work. I don't regret going this route and I have been off steroids for a couple months and I am doing pretty well. Whatever you decide - I hope it helps you get into remission.
Posted 6/17/2011 2:20 AM (GMT 0)
For many years I got remicade infusions every eight weeks and only had 1-2 small flares max/year. I have never had any side effects or reactions to it. Initially since nothing seemed to be working and then getting the infusions, I was in heaven.

Since Dec 2009 I've been struggling a little more due to a sudden blood clot as a result of the birth control I was on. Since being taken off that bc I have had more flares and now get remicade every six weeks. Trying to get back to normal again.

Let me know what other concerns or questions you have?

Posted 6/17/2011 2:25 AM (GMT 0)
I am just worried about the weakening of my immune system and the possibility of getting seriously ill. I have read on here that many people have taken it without any side effects or issues. I also realize that everyone will respond differently to it. I suppose I also am frightened that if it doesn't work than I am close to being out of options.

SurferChick, do you find that your flares are far less severe on Remicade? Is 6MP the same as Imuran? My doc mentioned that he would possibly put me on remicade to start and then eventually put me on imuran as more of a long term solution.
Posted 6/17/2011 5:58 PM (GMT 0)
geeter, Remicade is a faster solution than Imuran or 6mp. I can see why he would want to get you on it to stop symptoms but it is also common for people to use Remicade and when they stop the medication, they build up antibodies to it and it's no longer effective if they need to use it in the future. It's usually not recommended to use it to stop a flare and not continue use. I think in other countries this is more commonly done but i've never heard of Remicade being used that way in the US.

How bad are you symptoms? Can you wait a few months to see how you do on Imuran/6mp? They are similar medications and they can both take a few months to become effective. If not, Remicade or Prednisone are your options. You could also try antibiotics or other alternative therapies. There is a sticky thread on the top of the forum called UC Resources, in that post, there is a list of some medical and alternative treatments. Please give it a look.
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