Hi all! DS (24 years old now!) decided to stop Remicade last November after a great looking colonoscopy. His GI said OK but he has to follow up with fecal calprotectin this year and we just got his level back at 119. He sees his doc in a few weeks I’m just thinking should I prepare him to go back on a biologic or is 119 is not so bad with IBD? He has no symptoms at this point, so I’m sure doc will keep an eye on it but just wondering if anyone has experience with being off all meds and what calprotectin should look like (I seem to remember being told it’s higher even in IBD remission?). Thanks!
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Calprotectin level after stopping Remicade
- Thread starter kernelmom3
- Start date
Fecal cal can be below 50 in remission
My kiddo is consistently 15
119 depends on the lab
Lab corp has a lower number for normal and borderline
Quest has a borderline to 120 suggesting retest if it’s close
So also depends on disease location
Small bowel lower numbers are more concerning than the large intestine where flares are on the thousands
also depends on Gi doc
Good luck
Young adults are tricky
My kiddo is consistently 15
119 depends on the lab
Lab corp has a lower number for normal and borderline
Quest has a borderline to 120 suggesting retest if it’s close
So also depends on disease location
Small bowel lower numbers are more concerning than the large intestine where flares are on the thousands
also depends on Gi doc
Good luck
Young adults are tricky
My daughter has never been off meds. But she certainly was not the most compliant patient when she was in her early 20s! It depends on the kiddo and the disease severity, I would think, but my daughter's fecal calprotectin has been under 50 when she's been in remission. It's usually in the 20s but once or twice it's been <15!!! She is currently on Remicade and doing well.
My daughter has a friend who was diagnosed when she was 19 or so and refused biologics for years - she was on 6MP instead, despite a GI warning her that she would need surgery if she didn't go onto biologics. At some point when she was around 23 or 24, she stopped 6MP to try various diets and natural remedies. Both my daughters begged her not to stop meds and to consider biologics, but she was adamant she didn't need them.
Now, she's 28 and has narrowing in 3 parts of her small bowel and will likely need surgery. She's now on biologics but scar tissue has formed in at least 1 of the areas and possibly in the other two.
She's very afraid of surgery and Crohn's returning where she has surgery and causing further strictures and really regrets stopping her meds and not going on biologics much earlier.
If I'm remembering correctly, your son had pretty severe Crohn's in the past and had surgery, right? I would highly recommend that he speak to his GI about the risks and benefits of stopping biologics, considering his FCP has already started going up.
Personally, I think his FCP shows clearly that Remicade was keeping him in remission and he really should either get back on it or try another biologic.
My daughter has a friend who was diagnosed when she was 19 or so and refused biologics for years - she was on 6MP instead, despite a GI warning her that she would need surgery if she didn't go onto biologics. At some point when she was around 23 or 24, she stopped 6MP to try various diets and natural remedies. Both my daughters begged her not to stop meds and to consider biologics, but she was adamant she didn't need them.
Now, she's 28 and has narrowing in 3 parts of her small bowel and will likely need surgery. She's now on biologics but scar tissue has formed in at least 1 of the areas and possibly in the other two.
She's very afraid of surgery and Crohn's returning where she has surgery and causing further strictures and really regrets stopping her meds and not going on biologics much earlier.
If I'm remembering correctly, your son had pretty severe Crohn's in the past and had surgery, right? I would highly recommend that he speak to his GI about the risks and benefits of stopping biologics, considering his FCP has already started going up.
Personally, I think his FCP shows clearly that Remicade was keeping him in remission and he really should either get back on it or try another biologic.
I couldn’t agree more! He should definitely be on biologics but doc just sent me a message that said he can recheck in 3-6 months. DS had a resection in 2021 and wants to be in denial that that surgery fixed everything. He’s autistic (high functioning) so it’s very difficult trying to get through to him. I’m actually shocked he agreed to the FC sample! He’s going to see the GI in his office in a few weeks and I hope that between the two of us we can convince him to try another option. Maybe if it’s not an infusion he won’t mind as much. My husband is on Stelara for his Crohn’s and I know there’s one starting infusion involved with that but maybe the shots every two months would make him feel less “abnormal”.
Wish us luck!!!
Wish us luck!!!
Skyrizi is another option except there are 3 infusions to begin with and then one injection every 8 weeks. Stelara, of course, is a great option, but you should know that it seems like most kids need injections more frequently than every 8 weeks - either every 6 or every 4 weeks and some parents say that it's difficult for kids/teens/young adults to give themselves the Stelara injections. I'm not sure if that's the case with Skyrizi.
How is he with pills? Would he take a daily pill? If so, Rinvoq would be an option since he's over 18. That might make him feel more normal.
The one good thing about infusions is compliance - you can have bloodwork done right there and teens/young adults seem much less likely to skip or forget an infusion than a shot or a pill. That said, my daughters went from preferring infusions when they were younger to preferring infusions as they became older teens/young adults because shots are so convenient - 10 seconds (or less) and you're done!
How often were his Remicade infusions before he stopped them? Sometimes you can increase the dose and decrease the frequency (i.e. doing 10 mg/kg every 8 weeks vs. 5 mg/kg every 4 weeks) and that helps kids who are struggling with infusions.
The other thing that might help is seeing a psychologist to help him cope with everything that comes with a chronic illness.
How is he with pills? Would he take a daily pill? If so, Rinvoq would be an option since he's over 18. That might make him feel more normal.
The one good thing about infusions is compliance - you can have bloodwork done right there and teens/young adults seem much less likely to skip or forget an infusion than a shot or a pill. That said, my daughters went from preferring infusions when they were younger to preferring infusions as they became older teens/young adults because shots are so convenient - 10 seconds (or less) and you're done!
How often were his Remicade infusions before he stopped them? Sometimes you can increase the dose and decrease the frequency (i.e. doing 10 mg/kg every 8 weeks vs. 5 mg/kg every 4 weeks) and that helps kids who are struggling with infusions.
The other thing that might help is seeing a psychologist to help him cope with everything that comes with a chronic illness.
Thanks for the info! He was 5mg/kg every 8 weeks on Remicade. I will ask doc about best options but I think it’s clear he needs to be on something. I tried to get him to see a psychologist (even found him one with Crohn’s!) and he absolutely hated it. He says he already feels so abnormal with his autism and Crohn’s and having to go talk to someone makes it worse. I’ve tried to explain that therapy isn’t stigmatized like it once was and he won’t hear it. The hardest part has been that as he gets older, he gets more stubborn about these things and more in denial about his disease and we as his parents have less say in how he handles his health. I’m just hoping the doctor can talk to him, he does seem to react better to facts and logic.
I'm curious, what was his plan when stopping Remicade, and why did he stop? Did he just want to see if he still needed it, or was the Remicade causing other problems?
Sometimes, people can stop biologics and their Crohn's will stay in remission, but studies have found that a good looking colonoscopy isn't enough to predict sustained remission. However, people with long-term deep remission and no sign of Crohn's on various tests (including MRI) often can stop a biologic and not have a relapse.
The calprotectin is definitely a sign that not everything is ok, but maybe he wants to test his own strategies before going back to meds? 119 isn't super high and is often considered "good enough" for patients being treated (it may not actually be good enough). He should keep a close eye on that calprotectin, and if he's not able to keep it down then he should probably go back to a biologic.
If he disliked Remicade for some reason, this may be an opportunity for him to switch to a different biologic.
Sometimes, people can stop biologics and their Crohn's will stay in remission, but studies have found that a good looking colonoscopy isn't enough to predict sustained remission. However, people with long-term deep remission and no sign of Crohn's on various tests (including MRI) often can stop a biologic and not have a relapse.
The calprotectin is definitely a sign that not everything is ok, but maybe he wants to test his own strategies before going back to meds? 119 isn't super high and is often considered "good enough" for patients being treated (it may not actually be good enough). He should keep a close eye on that calprotectin, and if he's not able to keep it down then he should probably go back to a biologic.
If he disliked Remicade for some reason, this may be an opportunity for him to switch to a different biologic.
Remicade was working for the most part (there was a time in 2019 when he had to be bumped up to every 4 weeks but he was able to go back to every 8 weeks pretty quickly). The entire reason he went off it is because he doesn’t want to be “abnormal” and doesn’t want to “rely on meds”. I’ve explained to him many times that TONS of people are on maintenance meds for different reasons (diabetes, thyroid, etc.) but he won’t hear it. I’m going to go with him to the GI in a few weeks and at least bring up the possibility of starting another biologic if the retest doesn’t go down in 3 months.
I thought I would mention that the Specific Carbohydrate Diet has some really good results for both Crohn’s patients (including myself) and autistic kids. Might be worth a try if another biologic is not an option.
To Maya’s comment about her kids crohnie friend - in hindsight everything is clearer, but in this case the girl needing surgery 10 years from her diagnosis is a very expected outcome in most studies even among patients treated with biologics. And there is also another way to look at this entirely - the current therapeutic arsenal is exhausted in x years for each patient - this can be 1 year or it could be 50, depending on the patient. So whileI wouldnt recommend it, its also true that as she has “won” 10 years + a surgery, her therapeutic arsenal will expire that much later.
To Maya’s comment about her kids crohnie friend - in hindsight everything is clearer, but in this case the girl needing surgery 10 years from her diagnosis is a very expected outcome in most studies even among patients treated with biologics. And there is also another way to look at this entirely - the current therapeutic arsenal is exhausted in x years for each patient - this can be 1 year or it could be 50, depending on the patient. So whileI wouldnt recommend it, its also true that as she has “won” 10 years + a surgery, her therapeutic arsenal will expire that much later.
Actually her GI - both her primary GI and the second opinion GI she saw at big IBD centers - think she could have avoided scar tissue if she had started on biologics earlier. She really regrets her decision - she does not feel like she has "won 10 years + surgery" - she just wishes she had made different decisions and is very scared of surgery. She's also already failed Stelara, Stelara + MTX and is now on Humira + MTX so it's not like she's only tried one med.
My daughter, on the other hand, was also diagnosed 10 years ago. She was put on Remicade and MTX after being diagnosed. She has absolutely no scar tissue. It's not inevitable with treatment.
@kernelmom3 I definitely agree that his GI should talk to him about the importance of maintenance meds. Young adults are hard enough when they have just Crohn's - when there are other conditions, it becomes even more complex. I still wonder if he'd feel more "normal" if he was just taking a daily pill like Rinvoq or if compliance would be an issue.
Do you think showing him studies about relapses would help?
Same here kiddo was dx 12 years ago
No scar tissue -no surgery -nice pink healthy intestines on last scopes
Has been on biologics for 11 years .
No scar tissue -no surgery -nice pink healthy intestines on last scopes
Has been on biologics for 11 years .
I really wish I could understand his need to NOT be on meds (especially since the Remicade was working). I know part of it is that he knows he’ll have to come off our insurance in a year or two and biologics are VERY expensive. I’ve gone over how insurance works with him and told him about the programs we use to lower the cost. I’m hoping I’ll be pleasantly surprised at his appointment and he’ll listen to logic and/or maybe be open to a daily pill or a shot.
kiny
Well-known member
Tests are so cheap and readily available that you can to do them often enough to see a trend. Calprotectin levels in stool fluxuate throughout the day, neutrophils migrate to intestinal tissue daily due to the sheer number of lumen organisms and antigen present in food. Low grade inflammtion that subsides is not always a sign of crohn's disease. 119 μg/mg doesn't tell you much except that there's very low grade inflammation, which could be from crohn's disease, or a host of other factors. Plenty of people with 100μg/mg calprotectin in stool are perfectly healthy with no endoscopic signs of disease, trends are important.
Last edited: