Flaring on Remicade!

I'm in shock because several years ago, Remicade had me in total remission but because of costs, I stopped it. Now going back on it, It put me in remission during the loading phase, but now shockingly I've noticed my symtoms coming back and now I finally saw blood. You think coming off of it is the cause that my body developed anti-bodies? Any input is appreciated.

Yes, from what I gather if you discontinue Remicade for a prolonged period of time, the body is more likely to create antibodies. I got this information directly from the resistant program hotline but also found similar info on the Web and these forums. Granted, I've been on it for the months and I'm fearing my body has already created them.

Thanks for the replies. So is a switch to Humira the answer?

How long ago was your last infusion?

I just got back from my GI visit and he's getting me the Promethius test to see if i developed antibodies. It's a pain in the neck process. In the meantime, I'm starting up rectal meds again and see what happens. It's baffling because the day we started the Remicade I've been in remission through the whole loading phase. You would think it wouldn't work from the get go.

But he is saying that he was on remicade before, in the past, quit it altogether and now recently started it again and that it worked the second time just fine during the loading dose phase and then may have just quit working after the loading dose phase. He just couldn't understand why it worked the second time during the loading dose phase and then just quit. It seems that if he had developed antibodies then it would not have worked this second time during the initial loading dose phase.

The big question is my Dr. taking me off of 6MP with the Remicade. He says that it increases cancer risk. I hope that hasn't played a roll in all of this. Just to throw this out there. I'm a competitive cyclist and I started this new Creatine called Creature. My flare started at the same time I started taking it. It has been known to cause gastric issues. Any thoughts?

I would discontinue ingesting any creatures ASAP. It may not be a coincidence. I find it fascinating that doctors make up their own ideas based on facts and come up with opposing viewpoints on the same subject. Often the patients take the viewpoints of their doctors as medical fact. What I mean is one doctor says you should take 6mp along with Remicade so that you don't build up antibodies against the Remicade, therefore your treatment plan will work better. Another doctors says no, don't take both at once because it will increase you chances of getting cancer.

Sadly, it is my belief that they are both actually correct. Unfortunately, I think far too many doctors downplay the risks of cancer (and other significant side effects), quoting us percentages. Yes, maybe 10% sounds like a small percentage and that there is a 90% chance that nothing bad will happen to you side effect wise. Those sound like really good odds - except for those in the 10%. When you think about it when you talk about that 10% and consider there are literally hundreds of thousands of people worlwide that are taking these drugs for a number of different conditions, that means there are actually tens of thousands of people around the world who will experience significant side effects, including cancer. What if your doctor told you that 30,000 people got cancer or another significant side effect from doing this and then asked you if you wanted to give it a try? What would you say, "Hell no!". But, instead, they give you the old story about the odds are really very low that something could happen.

I also say that many doctors overlook your overall health picture as it is their goal to treat you for the reason you came to them, in our case UC. It is their job to treat you for UC and that's what they concentrate on. If you should come down with cancer due to a treatment then all they have to do is refer you to an Oncologist and that person can treat you for your cancer. It's that simple in their mind. After all it's not them that came down with cancer. It's you!

Remi levels can be tested before an infusion to determine if there is enough to be therapeutic. If too low, perhaps an increased dose. Antibody testing determines if the drug stopped for that reason. In our case, there was appropriate levels and no antibodies. It simply stopped working and now doc isn't even interested in trying Humeria or another biological that works on the same pathways. Trying Tacrolimus for remission, and hopeful the FDA will fastrack another biological drug.
Not too many tricks up the sleeve at this stage...best to you.

Unfortunately, I think far too many doctors downplay the risks of cancer (and other significant side effects), quoting us percentages. Yes, maybe 10% sounds like a small percentage

There is nothing like a 10% cancer risk from Remicade. Absolutely no way would a medicine get approved for the market if it caused cancer as a side-effect at that rate.

Having pancolitis increases your risk of colon cancer to something like 50% after 40 years. So what would you rather do, live with UC for decades and run the risk of getting colon cancer instead of lymphoma?

I don't think people realise any more that UC is quite a dangerous disease and that in the pre-steroid era, it killed many people if it became fulminant and they needed surgery. The meds we have suck in many ways, but it is so, so much safer to have IBD nowadays than it was 100 years ago.

By the time i was diagnosed my uc was fulminent. It was three months of having the gastro docs cell number and 911 ready. After six months it was in control but still having a major effect on my life. Even now i must be diligent about everyting i put into my body for fear of it coming back with a vengeance. Without pred and the biologics im not sure i would have ever recovered. I still sit in the bathroom after every meal out of habbit even though i know nothing is going to happen. I dont think its something you can just forget about and move on.

Actually I wasn't saying that there was a 10% risk of cancer from Remicade, I was saying there was a 10% risk of significant side effects from Remicade, such as life threatening infections, etc., including cancer. Most people don't realize there are other dangerous side effects from taking any immunosuppressant medications, not all life threatening but dangerous nonetheless.