High calprotectin and resection questions

[pdx]

E has had high calprotectin numbers--above 500--for the past 18 months. During that time she's had mild Crohn's symptoms--fatigue, low iron levels, occasional nausea and pain, and a little bleeding. Her weight has oscillated a bit over that time but it's good right now--around 140 pounds--and her fitness is better than it's been in years since she walks a few miles a day on campus going to her classes.

An MRE in May and scopes in August showed the same stricturing and inflammation at her TI that she's had since diagnosis. Her doctor upped her infliximab to 10 mg/kg every 4 weeks over the summer, and she switched from injected to oral mtx at the same time.

Her latest calprotectin from last week is 7900. I don't even know what to do with that number. Is it possible that it's a collection or lab error?

Next infusion is in 2 weeks and her doctor has ordered a bunch of blood tests beforehand, including infliximab levels, and then she has an appt scheduled with her a few days afterwards. I'm thinking we should ask for an MRE to see if things have changed since May.

I also want to ask her doctor what she thinks about resection. We've tried really hard to avoid one, but it also feels like so many of E's problems are due to that little 10 cm section of intestine, and that she might do so much better without it. What do you all think? I know that surgery itself always has risks, and that problems can develop at the points of resection.

@Pangolin: I know that your son had really high calprotectin numbers that came way down after his resection. What are your thoughts about resection now that some time has passed?

On the positive side, college has gone amazingly great for her this fall. She's acing her classes, making friends, walking and biking all over the place, and adulting like a pro.

 

[Scipio]

Lab errors are not common but they certainly do happen. I would get a repeat fecal calprotectin test before taking any drastic action based on that shockingly high number.

 

[Pilgrim]

We recently had a big fcal jump so we retested but unfortunately the numbers were similar. It doesn't cost much in time/effort to retest and will put your mind at ease.

 

[my little penguin]

^^^
second third that
Repeat fecal cal
If still high the MRE /scopes
Then decide based on all the data
After discussing risks with Gi
Then get a second opinion
Since better to have a fresh set of eyes if your going to cut

 

[Maya142]

Yikes! That is a huge jump! Does she have any symptoms of a GI infection? Diarrhea? My mind always jumps to C.Diff, because my daughter has had it so many times.

What did scopes look like in August? Just inflammation in her TI - none in her colon?

I do think at the very least another MRE is needed, plus a repeat FCP. And I would also ask if stool tests if she has signs of an infection. And I agree with MLP that a second opinion is a good idea if surgery is suggested.

Another thought, in case you do have to go with surgery. With COVID restrictions, some adult hospitals are not allowing visitors to stay overnight and I know that E recently switched to an adult GI. But my daughter was recently hospitalized in October and we were told in the ER that they were not allowing family members to stay overnight. M explained she had PTSD and was told that the only way patients could have a family member stay is if they had a terminal condition. But when she was transferred to a floor, we spoke to the charge nurse, who understood and got me permission to stay with her.

This may no longer be an issue for E - I'm thrilled to hear she is thriving at school! But thought I'd mention it because I know she struggled a bit when she was younger. And based on my daughter's experience, abdominal surgeries can be painful (although hers was an open abdominal surgery and hopefully E's would be laparoscopic) and it really helped her to have me with her then - I think she was 19 at the time, though she was still being seen by a pediatric GI and had her surgery at a pediatric hospital.

Good luck with the appt. - we will keep E in our thoughts!

 

[pdx]

Thanks, everyone. And I didn't mean to cause a surgery panic! Resection has never been mentioned once by E's doctors; that was just me thinking out loud. And my husband is pretty against the idea of surgery too. We certainly wouldn't (and couldn't) do anything without her doctor's agreement, and I'd want a second opinion too.

She doesn't have any signs of a GI infection, but I'll bring up the possibility with her doctor. Her scopes in August didn't show any inflammation in the colon, but she did have "moderately severe" inflammation at the TI and a small fistula in the area, so things were a little worse than usual.

E talked to her doctor on the phone a few weeks ago and they discussed a treatment change if this round of testing showed inflammation. The doctor mentioned Entyvio as a possible next option, since she's been on an anti-TNF for 7 years. What do you all think about that choice?

In the meantime, I just sent a message to her doctor asking about a repeat calprotectin and an MRE.

 

[pdx]

Already heard back from her doctor: yes on both the repeat calprotectin and the MRE. Hopefully we can get both done while she's home over winter break in a few weeks.

 

[my little penguin]

Normally after being on anti tnf for a while they switch to a different type of biologic
In my kiddos case from humira to Stelara
But theory is the body will fight against a new pathway less at least at first
Glad she will get MRE and fecal cal

I will say we were told entyvio is mainly for large bowel inflammation and Stelara for small bowel
That entyvio doesn’t do well on the TI and small bowel

tagging @crohnsinct

 

[Pilgrim]

We went to Ustekinumab after losing response to Ada after many years of use. But my daughter has duodenal involvement. GI seemed to think it is a better choice for small bowel disease but that remains to be seen. Vedolizumab seems like a good option. I would look into what works best for fistulizing disease.

 

[Pangolin]

My son's fecal calprotectin was way up there at 9000 and 13000 (while on Entyvio, even), although his symptoms were not actually severe. He ended up getting a short resection to cut out a stricture at the end of the ileum, I think it was about 3 or 4 inches cut out. After the surgery, fecal calprotectin was stubbornly around the 500 range until he started Stelara, and most recently it was under 50.

I assume that the surgery was necessary to get to this point, but it's always possible that it could have healed up if we'd figured out exactly the right treatments. At that point we didn't want to spend the time to try more things before just getting that stricture out, because it's also important to get to remission as soon as possible.

 

[crohnsinct]

Oh no! I am so, so sorry that she is not doing better. Here are my thoughts in random order:

- that is a high calpro and I would definitely want an MRE, maybe even scope to rule out colonic involvement. TI disease doesn't "usually" increase cal pro that much so to get that high I would want the full picture. The fistula could also be contributing to that especially if there is an abscess anywhere and I imagine the MRE will pick up on that.

- next drug....Entyvio isn't as good in the TI as Stelara so I would lean towards Stelara. Neither of them are as good as Remicade at healing fistula's so definitely get that levels/antibodies test and see if you could optimize the Remicade more. She had developed antibodies to Remicade before and I am wondering if maybe they are getting higher now. If so, Humira might also be an option since anti tnf worked in the past.

- we are seeing more and more ridiculously high cal pro results here in the parents forum. I am wondering if the tests are more sensitive these days or something. I will be sure to ask our GI and let you all know what I find out.

- I am so, so impressed with E! She is rocking this adulting thing!

 

[Maya142]

I know E is on 10 mg/kg of Remicade, but just wanted to say that it is definitely possible to go up - my daughter was on 15 mg/kg for a while, then 17.5 and finally 20 mg/kg. I will say that was considered "experimental" but insurance covered it. She had infusions every 4 weeks (sometimes even every 3.5 weeks).
Insurance companies did approve off-label doses/treatments more easily back then - this was 6 years ago, I think. Since then we've noticed they have really fought approving higher than normal doses. But with appealing you may be able to get it approved, especially since she has a fistula.

I also wondered about what @crohnsinct said - small bowel disease tends to have lower FCPs - like 500, where E's normally at when she's flaring. I was also thinking another scope may be in order though I know she had one quite recently.

I would definitely consider Stelara or Humira over Entyvio considering she has major TI issues. I know doctors are switching from an anti-TNF to either Stelara/Entyvio but back before those were available, you'd typically switch from one anti-TNF to another, especially IF you responded to the first one. In rheumatology, that's still quite common - you typically try a second anti-TNF before moving on to other types of biologics (now only if you responded well to the first one, since lots of other kinds of biologics are available for RA, psoriatic arthritis etc).

Both my girls responded to multiple anti-TNFs and multiple other biologics in the same class (such as two different IL-17 inhibitors).

If she now has colonic inflammation as well as in her TI, then I'd seriously consider Humira. I'd also look at Humira, Stelara and Entyvio and do some research to see which heals fistulas best, after Remicade.

 

[pdx]

All the test results are back. Her repeat calprotectin was 1100, which is still very high but more in line with past results than the 7900. Infliximab level was 19 with no antibodies, so a med increase is not likely to help. MRE showed a bit more stricturing at the ileum than in the past and suggested fistula development between two loops of small bowel.

So her doctor wants to change treatment, and says that Kaiser requires us to try Entyvio before Stelara. I think that's OK, but I have a message in to her asking if Humira might be a better next step due to the fistulas. Anyone have any knowledge about Entyvio vs Humira? I feel like anti-TNF's are used more for fistulizing disease, but maybe a different mechanism is worth trying?

 

[pdx]

I just read through this thread again and realized that many of you talked about the different treatment options already--thank you. I'm going to do some more reading and we'll wait to see what her doctor says.

 

[crohnsinct]

True! Entyvio would not be the next drug for fistulizing Crohn's. It would be Humira. If the fistula is just starting to form then maybe just reducing inflammation will help alleviate the pressure and stop the formation.

I am so surprised that for small bowel disease Kaiser is making you ty Entyvio first. They both take quite a while to get to therapeutic levels, would she do EEN while you wait or at least just for the first few weeks. Could really help with inflammation also.

So sorry she is having to deal with this. Crohn's just sucks!

 

[Pangolin]

Continued stricturing and possible fistula despite plenty of infliximab says to me that most likely surgery will be necessary. This all sounds familiar. I wouldn't expect too much from any of the biologics under those circumstances, but EEN could also help keep things from going way out of control while she tries things.

 

[pdx]

Yeah, we'll have to see if another biologic can tamp down the inflammation. I'll talk to her about EEN. I don't know if that's something that her adult GI is used to using, and I also don't know if E would be able to handle EEN on her own at school. She definitely would need an ng-tube, so that complicates things a little.