Remicade: Loss of Response?

Hi Everyone,

Just wanted to quickly check in with those of you who've had experience with Remicade. I believe that I am a great responder to the drug, as it pulled me out of a severe flare up last Fall that Imuran and Lialda (and then even prednisone) couldn't control. My fecal calproctin scores dropped from 1,500+ to undetectable over the course of 1-2 months, which really impressed us all and obviously made me happy. Stools stopped having any blood and were largely formed within 1 week.

I tapered off all steroids pretty quickly and easily, and have been enjoying life in remission, continuing on with Remicade, Imuran, and Lialda. Occasionally I'll have very mild symptoms come and go, but never anything that is without a doubt a UC flare. Calpro scores remained 0 on 3 separate testing occasions, and symptoms were (and remain) good. We didn't do a colonoscopy at the time, but the consensus was that I was in a solid remission.

Fast forward to last month, when was scoped recently for my regular (yearly) screening, and the finding was that my colon was 90-95% healed, with a 2cm patch of some minor inflammation in the sigmoid. Calpro tests were ordered immediately after the scope, and showed an increase to about 62 (forget the units) and then 124 on a subsequent test, done this weekend after starting Rowasa in between. The rise to 124 was a real shocker to me, as I felt great and was positive that the result would be 0.

My question is whether or not any of you have had similar experiences whilst on Remicade. In other words, can this finding be consistent with a long and durable response to Remicade, or is it rather a "trouble ahead" indicator that this medicine regime is highly unlikely to bring me long term control of the disease? Do people have small bumps on the road of Remicade success, or is a slipup like this (or perhaps even larger) automatically an indication that one is no longer a responder? Long question short, do people with long-term success on the drug ever have issues in between, or is it always a smooth road?

I'm trying not to worry too much, but am finding it very difficult to do! Thank you for your time and input.

Thanks for the input DB, I appreciate that.

I realize that calpro isn't always accurate, but (in my case at least) I think it's indicative of something that's not quite right, as confirmed by recent c-scope (~2cm patch of mild inflammation).

I did a levels test about 3 months ago that showed very high levels (above 20) and no antibodies. I'm at 10mg/kg every 8 weeks along with Imuran -- I doubt that whatever this is stems from insufficient Remicade but of course could be wrong. We'll be re-testing levels soon if this issue isn't resolved over the next few weeks.

I can't help but be nervous about this; I really don't want to end up in a bad flare like last year again. I just hope that it's possible for this to be a self-resolving bump in the road as opposed to an end of the (remicade) road.

I've been on remicade 2 years and my last colonoscopy showed 90% healed with some patches of mild inflammation. Ive seen 3 GI doctors (due to some switches in the practice) and they all agree that they consider that remission. I wouldn't get hung up on 5% if you feel great.

Remicade is a powerful medication but it cannot prevent flares, and nothing can. When we are well treated, we can have the occasional mild flare, and we will need additional medications to treat that flare.

So, I wouldn't at all say you have a loss of response, rather you just have a small flare.

Simmering with 3 bms a day, and blood on tp once a week or so. Mr colon isn't a perfectly happy camper but it could be much worse! For me, remission is 1 bm a day.

Oh I'm a hopeless optimist. Right now I'm not worried things will sort themselves out in time. You get to know your enemy, Mr Colon, and what kinda crap he deals. He gets kinda predictable over the years of having UC. Have I been worried oh yes, absolutely when I first saw blood after a 2 year remission. Everyone has moments when symptoms reappear unexpectedly and we fear the absolute worstcase scenario.

Thanks iPoop and TotesMagotes for sharing your input -- it definitely is helpful to discuss this together (for me at least, hopefully others too)!

iPoop, I think I would definitely do better, at least be less stressed, if I adopted your "hopelessly optimistic" attitude! I'm an engineer by training and in general think of myself as level headed, but on matters of health and family I can definitely fall victim to unneeded anxiety by imagining worst-case scenarios.

Totes, it does sound like we're in a pretty similar spot and are both worrying too much about it! I really hope that we are able to kick this last bit of inflammation and get back into a solid remission. The symptoms as-is aren't bad at all... I suppose I could be patient if it weren't for the fear of it getting worse! I almost wouldn't know it were there at all if it weren't for the scope and that odd calpro result.

It's comforting to hear that your small patch of UC has improved (or at worst remained stable) over a long period of time. The healing of that last little bit of UC might just happen spontaneously, or with some more time and a flood of 5-ASAs. What a relief it will be to have a totally healthy colon over a long period of time, hopefully starting soon... then we'll have no excuse to stay worried! I think in the meantime we should share our doctors' happiness -- seems like pretty strong evidence that I'm acting a little irrationally being so upset and fearful about this!

RocketMan12 said...


Kulinarykidz, your experience sounds quite similar to the situation I'm in, and your calm and positive outlook makes me feel a whole lot better about it -- thanks for sharing that! Are you doing anything differently to knock down that little bit of inflammation? Do you or your docs fear that it might spread into a larger flare, or has it been ongoing and mild for some time now?

I suppose it would be natural -- logical, in fact -- to believe that UC can go into and out of remission on Remicade just as it can on any other meds. One small "strike" isn't a game over, I hope!

I have pancolitis and it affects 3/4 of my colon. Prior to remicade my flares were awful. I usually get hospitalized because I go 20+ times a day (all blood and mucous) and my doctor fears toxic megacolon. So with that being said, I'll take this current normal. I have 1 day every 2-3 weeks of loose stool but no blood or mucous and every other day I love life normally. . I had one flare since starting remicade but it was short and manageable. I'm reasonable and know at any time I could revert but hopeful that I'll keep responding well. My doctors aren't concerned at all and kind of see it like I do.

I've learned to take the good days and not spend them worrying about what might happen. My therapist called my thinking "catastrophizong" and it was crippling. I made a plan for if I do flare---accept it, treat it, consider new meds, etc. I've met with s surgeon and I have accepted that eventually remicade may fail and I may not respond to another med and surgery will be the next option. I'm at peace. Control is a big thing for me so with a plan I feel better.

Totes, I'm so glad my words brought you clarity. I have to say these things out loud to my husband very often to center myself. Like many other with uc I have high anxiety. We are in the process of moving out of state, selling my business and with the stress of changing doctors and basically setting up a new life....I find myself slipping into old patterns. "What if I flare?" "Should I go out to eat?" Etc etc. It's a daily struggle few can relate to beyond other ibd patients.

KulinaryKidz said...
We are in the process of moving out of state, selling my business and with the stress of changing doctors and basically setting up a new life....I find myself slipping into old patterns. "What if I flare?" "Should I go out to eat?" Etc etc. It's a daily struggle few can relate to beyond other ibd patients.

Hang in there, you'll pull through as I did. In 2017, the wife and I sold our south-eastern NH house and left our jobs there, moved to northern-western VT to start new jobs, and bought and moved into a VT house. It was a 5 month process from start to end, Phew. There were many, many stressful moments (don't get me started on realtors, the DMV, and other things) but we managed to pull through and are now settled in nicely. A lot of change all at once can be a head-trip and make us as nervous as long tailed cats in a room full of rocking chairs, but it was worth it! As we are both now in our happy-place with jobs we like and a nice house nestled in the country in the green mountains away from the greater Boston exurb sprawl, traffic and noise! I'd rather look at mountains, listen to nature, and not see any neighbors at all from my porch. As that helps reduce stress substantially going forward

You guys are inspiring -- thanks for sharing those personal stories and fears.

I'm trying to do my part to stay positive here. Sounds like there are some good strategies to accomplish that which I should start looking into. I've had episodic anxiety around IBD for as long as I can remember, but it definitely got a little worse recently as I've had a couple bad flares come out of nowhere during otherwise peaceful multi-year remissions. Earlier in my childhood, I was sick multiple times per year, but I think I was young enough then that I guess it never really sank in. And of course I didn't have the best "normal" to compare it to -- now that I've had a taste of a good remission I feel so much more scared of the alternatives. Stupid of me though; I should just be enjoying these times and anticipating more of them as we learn more about this disease and how to control it!