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High Calprotectin - On Remicade

Hello all,
My son (16) has Crohns and is on Remicade for more than a year. Perianal fistula was the only manifestation of Crohns. No belly pain, nausea or loose stools ever (before diagnosis or now). We did every scope and test at the time of diagnosis and all were normal. Despite all normal results we started Remicade hoping to improves the fistula. Nothing changed during this past year as for the Fistulas. Last blood test about (7 weeks ago) showed slightly elevated CRP, sedimentation rate, and AST. Doc ordered calprotectin test. Results came in today over a 1200.
We have an appointment coming in a few days. i don’t know what all this mean and what I should ask. Does this mean Remicade is not working or never worked?
I appreciate any information.
 
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Scipio

Well-known member
Location
San Diego
The high calprotectin means there is inflammation in the gut - probably due to the Crohn's. It suggests that the Remicade is not working or not working very well. There may need to be follow-up tests to detect whether your son has developed anti-Remicade antibodies which would reduce the effectiveness of the Remicade.

Depending on the results of that the doc may want to up the Remicade dose and/or add immunomodulators such as azathioprine of methotrexate to try to knock down the antibodies. Or she/he may want to to change to another medication altogether.

Remicade is supposed to be the most effective drug for closing fistulae. Unfortunately it's not working very well in this case.
 

Maya142

Moderator
Staff member
It does sound like his medication regimen needs changing - like Scipio said, the high Fecal Calprotectin is likely due to inflammation in the gut. FCP can also be high with a gastrointestinal infection, so most GIs will check for those, if there are symptoms like diarrhea. Since your son doesn't have those symptoms, I would guess that it's more likely to be inflammation than an infection.
They can also check his Remicade levels and whether he has antibodies to Remicade (which make Remicade less effective) and based on those tests, they may choose to increase his dose/frequency of infusions (or both) or they may choose to switch to a different drug. His doctor might also want to do scopes to see where the inflammation is and how bad it is, since his last scopes didn't show much.
 
@Maya142 thanks so much! The CRS examed and saw infection at the site of fistula - even though my son has seton. His GI says the infection might be the cause, but wants to also repeat the calprotectin and do scopes. Per the GI, since my son does not have any physical symptoms we can do scopes in the next couple months (not urgent). They are checking the anti body and Remicade level tomorrow. The idea, as both of you said, is that the current treatment is not doing what it is supposed to be doing - something gotta change. I am somewhat frustrated though because we asked the doctor during this past year to check the levels, but he did it only once right after the loading dose was done. We kept on saying the fistula drainage is not decreasing, and how do we know if Remicade is working. The response was if no more fistula or other Crohns symptoms appear then the treatment is working. I’m curious to know how often do other doctors check the antibodies and medications level.
 
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We did the blood test today. Still waiting for Remicade level and antibodies, but AST and ALT are both above 100. This make me very concern. We will talk with his doctor after all results are in (probably in a week) but the liver function results scares me badly. Any positive information that can carry me for a week until we see his doctor? Does changing medicine or frequency fix the issue?
 
Remicade does occasionally cause liver damage, but those numbers might go down by themselves.

The elevated calprotectin indicates that Remicade is not doing what you need it to do. Maybe it's time for a switch.
 

my little penguin

Moderator
Staff member
Ast and alt can go up easily
Any Tylenol? Any antibiotics for anything ?
Any other meds ?
If it was extremely concerning
You would have gotten a call from the Gi office immediately after the blood test results were sent to them
When it’s just elevated a “bit” they retest
Also depends on range of the individual lab for normal (some labs have normal range to 80! Vs 30 something for others -very weird )
Is it more than 3 times the upper limit of normal ?
Ds has been off before
Retested and it was fine
But we do monitor it every three months due to methotrexate.

Understand when the doc is truly concerned they call now not in a week
Hugs 🤗
 
@MLP thanks for the comforting words. I sincerely appreciate it. The AST is 3.5 times above the lab’s normal range and the ALT 2.1 times more. Yes, he had LIFT surgery to fix the fistula about a week ago. Also had about 3 days of regular Tylenol after surgery because he had pain and fever. He is not taking any other meds. However, the AST, CRP and ESR were on the rise even before surgery and the doctor brushed it off. I was the one asking for the antibodies and Remicade levels to be checked. I’m sure the doctor does not think this is something that should be dealt with immediately and will not call until we get the remaining results. I was hoping he had done more tests when he noticed something is off rather than having the “let’s wait and see approach”. It is heartbreaking to go through the surgery and waking up seeing only half of the area was attempted to be repaired because there was infection on the other half. Now all of this out of normal result.
Have you seen anyone change medicine because of liver numbers? Does that help? At some point doctors get concern about AST and ALT levels?
 

my little penguin

Moderator
Staff member
Tylenol will raise numbers easily .
Especially if taken before the bloodwork
The numbers will go back down
If there was an infection did they give antibiotics as well during the surgery or after ?
Those will also raise the numbers.
 

Maya142

Moderator
Staff member
If your son's liver enzymes are persistently elevated and they can rule out other causes, they may stop Remicade. But generally they do a "wait and see" approach to see if they normalize. Last October, my daughter had an ALT and AST that were well over 100 - about 3 times the upper limit, I think. But her CRP was like 130 if I'm remembering correctly (normal is <3 at that lab) and her Alkaline Phosphatase (another liver enzyme) was also quite elevated at 300+ (upper limit of the range was like 140, I think) and her GGT (also a liver enzyme) was over 1000 (it should be under 60).

Her numbers were so off that she was hospitalized for a possible liver biopsy because they thought she may have an autoimmune liver disease but honestly, they did blood work daily for a couple days and pretty much everything normalized - AST and ALT became completely normal, CRP dropped to 60 and then after a couple days to 15 (still high, but much more normal for her, since her arthritis is always flaring). GGT and Alkaline Phos came down to - not normal, but did decrease a LOT and so now she's being followed by a hepatologist, who is keeping a close eye on her labs.

She did not have to stop any particular medication - she is on Vancomycin, an antibiotic due to recurrent C.Diff, and her hepatologist says that could be causing the liver enzymes to be high or it could just have been a virus, even though she didn't have symptoms. If her labs get worse again, once she is off the Vancomycin, he will do a liver biopsy.

She is on Remicade now, with MTX and another biologic for her inflammatory arthritis (she was on Rinvoq back then) and her last set of liver enzymes looked even better.
 

Maya142

Moderator
Staff member
However, the AST, CRP and ESR were on the rise even before surgery and the doctor brushed it off. I was the one asking for the antibodies and Remicade levels to be checked. I’m sure the doctor does not think this is something that should be dealt with immediately and will not call until we get the remaining results. I was hoping he had done more tests when he noticed something is off rather than having the “let’s wait and see approach”. It is heartbreaking to go through the surgery and waking up seeing only half of the area was attempted to be repaired because there was infection on the other half. Now all of this out of normal result.
Also, it sounds like you're not happy with the way your GI is treating your son - I agree that he should not brush off a high CRP and ESR and other labs! Have you considered a second opinion? Is your son being seen at a children's hospital?
 
Have you considered a second opinion? Is your son being seen at a children's hospital?
We got 3 or 4 second opinions from well known children hospitals at the beginning, but not recently with all of these wacky numbers. We are at one of the best pediatric IBD centers, and I don’t think if I can find anyone better than him nearby. It is a good idea though to get another second opinion for this matter.
 

crohnsinct

Well-known member
Don't put too much stock in labs pulled while inpatient, especially after surgery. Things go way out of whack when inpatient with all the meds and fiddling around and infection etc. I would wait until he is home and doing his normal routine for a few months to see where these numbers go.

For an interesting twist on lab values, read my O's thread.

LFT's fluctuate wildly. My girls have also had crazy elevated labs only to have perfectly normal labs the next month or two. They won't pull a med just based on labs. They will do a scan or biopsy etc to confirm actual damage. Until then they will try to manage the situation with tweaks to dosing, schedule etc.

Drug levels are not pulled on a regular basis. Those tests are crazy expensive and many insurance companies still consider them experimental. Some drug companies will cover the cost to test levels/antibodies twice a year but other than that they will check only when there is suspicion ie: symptoms.
 

Maya142

Moderator
Staff member
We got 3 or 4 second opinions from well known children hospitals at the beginning, but not recently with all of these wacky numbers. We are at one of the best pediatric IBD centers, and I don’t think if I can find anyone better than him nearby. It is a good idea though to get another second opinion for this matter.
We have gotten second opinions many times over the course of my daughters' illnesses. My younger one has particularly severe arthritis and whenever we're really, really not comfortable with what the doctor is doing or especially if we think the doctor is missing things or brushing them off, we get another opinion. It can really help clarify what the best option is.

Also know that in some hospitals, you can switch doctors within the department. It's not always easy, but it is possible. The best centers for pediatric IBD are Children's Hospital of Philadelphia, Boston Children's and Cincinnati Children's.

They won't pull a med just based on labs. They will do a scan or biopsy etc to confirm actual damage. Until then they will try to manage the situation with tweaks to dosing, schedule etc.
I honestly think this depends on the doctor. My older daughter had a rheumatologist who pulled MTX after she had elevated liver values for several months, when she was 20 or so. Hers were also in the 100s and no biopsy or scan of her liver was done. Perhaps because MTX is known to cause liver issues - it's MUCH more common with MTX than with Remicade. She stayed off MTX for about 6 months but her arthritis kept flaring and so her doctor carefully reintroduced MTX at a much lower dose (with weekly blood work for quite a while) and thankfully, that worked - tests were all normal.
 
Don't put too much stock in labs pulled while inpatient, especially after surgery. Things go way out of whack when inpatient with all the meds and fiddling around and infection etc. I would wait until he is home and doing his normal routine for a few months to see where these numbers go.

For an interesting twist on lab values, read my O's thread.

LFT's fluctuate wildly. My girls have also had crazy elevated labs only to have perfectly normal labs the next month or two. They won't pull a med just based on labs. They will do a scan or biopsy etc to confirm actual damage. Until then they will try to manage the situation with tweaks to dosing, schedule etc.

Drug levels are not pulled on a regular basis. Those tests are crazy expensive and many insurance companies still consider them experimental. Some drug companies will cover the cost to test levels/antibodies twice a year but other than that they will check only when there is suspicion ie: symptoms.

His surgery was outpatient. Although it is comforting to know the levels go up and down after surgery, the fact that they were on the rise, including CRP, ESR, and Calprotectin before surgery tells me something gotta change.

I don’t have the knowledge to suggest the medicine should be pulled. Just want to make sure my son is in caring hands - and he may very well be, but I have to do my part to be sure.

I do understand the insurance and test prices, but 1-it’s been more than a year from his last level check, 2-Remi didn’t do any improvements of his fistula, and 3- I had to ask for the test twice. Our center is a powerful institution and I’m sure they could at least recommend the test and wait for the insurance to deny. As much as I liked our doctor and trusted his knowledge, this makes me uncomfortable.
 

Maya142

Moderator
Staff member
Hmmm...I'm going to tag @crohnsinct because she may know more centers in CA and @pdx since she's on the west coast.

You should definitely be with a doctor you trust and are comfortable with. I don't think it's unreasonable to ask for Remicade levels in this scenario - it makes a lot of sense, in fact! You have a child who is not improving on Remicade and his FCP is quite high now. Even if he didn't have bowel involvement in the past, it's very possible he does now and I am kind of surprised he does not want to do scopes sooner. Your son may not have symptoms but his labs and stool tests are off. I understand holding off till the infection has been treated but months sounds like too long to wait to me. I would want them done sooner so you can decide what to do with Remicade. But it is true that everything moves very sloooooowly in GI land...drives me nuts!
 
Hi there. I'm in the Pacific Northwest so no experience with LA doctors--sorry. I hope that the remicade levels results come back soon and are helpful in figuring out what's going on.

I will say that it's really hard to find a good doctor right now, at least where we are. All the adult GI doctors in our HMO are terribly oversubscribed. We changed to a new doctor in April after our daughter's new adult GI left the group (and we had been thinking about changing anyway, since my daughter wasn't getting great care from her). The doctor who she has now is good, but she is basically taking care of my daughter on her own time, calling us during free moments during her hospital days, or at the end of her work day. I can't even complain about it because they are trying as hard as they can to hire new docs, and we're so grateful to be with the new doctor. Even with this, though, we've been able to get testing done when we ask: a scope, MRE, calprotectin, and levels testing.
 
@pdx Thanks so much for the reply. We’ve switched once and I thought we are at the right place up until lately.
Thankfully, we have not had any issues with insurance so far. That’s the reason I am frustrated about our doc acting relax. Will post updates when the results are in.
Best of luck to your daughter.
 

crohnsinct

Well-known member
Things with your current GI do sound a bit wonky. It is so hard when you lose trust in a provider who you previously trusted.

Which hospital are you with in L.A.? I know there are two and one is preferred by people more than the other. You can PM me if you feel more comfortable discussing specific centers privately.

Would you consider an adult GI? At 16, some adult centers will take a new patient and since your son's fistula is not responding to Remicade, he is a challenging case and needs a doc with a lot of good experience with these types of cases. I am thinking of a specific adult doc in L.A. who I would love to get my girls in to see but L.A. is a bit too far for us given O has to go in so often. There is also a top notch adult center and doc in San Diego. Maybe don't transfer care there but just get the second opinion there?

My girls were/are seen at Stanford Children's. They have two really amazing docs there who have loads of experience who I can recommend. There is also UCSF Children's with a very reputable staff if you are willing to travel up this way. When you get to the tertiary centers, they are often willing to consult on the case with the primary local GI
 
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