High Calprotectin - On Remicade

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WindingRs

WindingRs

Joined
Sep 12, 2020
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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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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.
 
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.
 
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?
 
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.
 
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.
 
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.
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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?
 
Maya142 said:
Have you considered a second opinion? Is your son being seen at a children's hospital?
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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.
 
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.
 
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.
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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.
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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.
 
crohnsinct said:
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.
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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.
 
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.
 
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
 
We got the Prometheus result:
Remi is 1 and antibody at 7. It says detectable Infliximab and detectable antibodies.
I’m curious to know if fixing the levels also helps the AST/ALT levels.
 
Hmmmm that is a pretty low Remicade level, especially for someone with active disease. Most GI's aim for a 10 or above for severe inflammation and I think fistula formation counts as severe. Will respond to your PM in a few.
 
Got a call from our GI…he wants to double the Remi dose and cut the frequency to 4 weeks then see how things are from there. I feel sad and worried 😟 At the same time, I feel if medicine change or combination medicine was on the table I would be more anxious.
 
@WindingRs - my son had no detectable Remicade in his system at one point and he was doubled dosed and frequency shorten to 4 weeks. It turned everything around for him. It worked. In fact, after a year, he was able to go back to regular dose at 4 weeks and is on that dose now (3 years later). So this might be just what is needed.
 
Totally agree with this decision. His level is really low so makes total sense.
FWIW - studies have shown that shorter frequency and higher dose do NOT increase risks.
 
Also wanted to echo that this dose doesn’t have to be forever. Once healed and in deep remission you can decrease dose or move out frequency.
 
Remicade (infliximab) does rarely induce liver damage and hence high liver enzyme levels. Liver damage by drugs and supplements is very common. Here is site that has compiled the scientific reports of liver damage for hundreds of drugs. Check out the entry for infliximab and check on any other drugs your son is currently taking.

https://www.ncbi.nlm.nih.gov/books/NBK547852/
 
Thanks @Scipio for sending me the info. Our doc wrote more liver test measuring bunch other things (no idea what) that will be done at our next infusion.
He said the ALT/AST levels can rise up to thousands, and didn’t seem too concern yet. But I am for sure scared and worried. I am curious to know if liver toxicity happen over time or abruptly. Should we get the blood test done sooner than next infusion? I hate to have my son poked again now if it is not time sensitive.
 
Liver damage generally happens over time. My family has a history of bad livers so I am a little nutty over LFT’s. But honestly, if docs are not worried, I don’t worry.
 
Honestly, if your doctor was worried, you would know. My daughter started having high liver function tests about 1.5 years ago. Her GI watched them closely and did multiple tests and some scans (which showed a slightly dilated bile duct but nothing else) but it was only after having elevated LFTs for a YEAR that she was referred to a hepatologist who is now watching her AST and ALT as well as other labs. Like your son, hers are high but they're not terribly high and have gone down considerably since when she was hospitalized and AST and ALT were well over 100, Alk Phos was in the 300-400 range and GGT was in the 1000s.

I think upping his Remicade makes a lot of sense - his levels indicate that he is just not at a therapeutic dose. It might start to work wonders when he's at therapeutic dose AND like @crohnsinct and @Jo-mom said, once he is stable and his fistula has healed and his FCP is normal, you may be able to reduce the dose significantly.

My younger daughter's Remicade was also just upped to 10 mg/kg every 4 weeks last week (despite the abnormal LFTs). Her hepatologist and GI are watching her labs and will decide if we need to change something based on them. His next labs will be in 4 weeks or less, depending when his last infusion was, so I wouldn't worry at all.
 
Calprotectin is still above 800 after a few months on higher dose of Remi and lower frequency. The Remicade level and antibody were normal after dosage change in October. Emailing the GI tonight. He probably would want to do more scopes. Not looking forward to it 😢
 
They may not need to scope. 800 means inflammation and probably just losing response. They may just switch the meds. At least that is what we did with O when she had obvious symptoms and high calpro. No sense in going through scopes when you know what you will find.

What was his Remicade level? Normal doesn't always work. They have found that to get inflammation under control you really need much higher than the published normal.

Also, and I haven't reviewed all the previous posts, is adding methotrexate an option? I imagine not with the wonky LFT's.

Would he consider a round of EEN to knock back the inflammation and give Remicade a chance total hold. Sometimes the inflammation is too harder Remicade to wrestle but when you hand it a healed bowl, it does well maintaining it. This is what we did with my girls and it worked for awhile but they both eventually lost response anyway.
 
Thanks much @crohnsinct ! Our doc confirmed he wants a colonoscopy and possibly pillcam. I will ask him bunch of questions including the urgency and timeline for colonoscopy. My son’s Remicade level in October was 14 with the double dose at 4 weeks interval, and no antibody.
My son’s crohn has been always at his perianal area, and although I have asked many times, they say EEN or Diet has no impact. I guess the colonoscopy is looking to see if the Crohns is spreading beyond the perianal. Although he has no symptoms - eating well, gaining weight, active in sports…
methotrexate has never been discussed. I hope he is not suggesting it. I am not sure if I am comfortable with the combo therapy.
Can’t wait to talk with the GI.
 
Given that he's always had perianal disease, that's probably why the GI wants the scope - to see if the Crohn's has spread and to see the state of the colon/terminal ileum. My daughter's GI also wanted to scope before changing therapies, when she flared several years ago. In her case, the scope showed inflammation and ulceration in the terminal ileum and cecum, unlike at diagnosis, where it was in the TI and but also in the entire colon.
 
@Maya142 out of curiosity what difference does it make knowing the Crohns has spread or not? Would it change the course of treatment ? We already know there is inflammation and we know the perianal fistula still draining after a year and a half of treatment. I have asked our doctor the same question in an email and waiting to see what he says.
 
Children tend to have changing disease
Type abd location
So while most start out inflammatory
Some progress to strictures , obstructions, fistulas
The spread happens within the first 10 years and is needed to know then they can know how severe the disease is
By how much is affected and type
That changes how they treat
Adults tend to have disease that stays put and type stays the same
 
It might change treatment. For example, if your doctor decides to move on from Remicade to a new drug, the location of disease might decide which drug he chooses. Entyvio works best for colonic disease, so if your son's scope shows a whole lot of inflammation in the colon, then that might be an appropriate treatment. But if it shows significant inflammation in the small bowel, another drug, like Stelara or Humira, might be better.
 
Wow my heart is boiling! I was hoping to postpone the procedure till summer. Can’t wait to hear from the GI.
 
Heard back from our doctor. He would not recommend change of medicine or change in management just because of high calprotectin. He says this test can have false negative or positive (I did not know this). Also he says the scopes are not urgent because my son does not have any symptoms, but should be done in the next couple of months. I want to get it done sooner that later, but now have to convince the teenage son. He is so frustrated with all the doctor appointments and procedures.
 
I agree with Maya scopes could be helpful in steering you to one med or the other based on disease location.
Sorry, I don’t agree with your GI nor has any other GI my girls have seen. False positives with calpro are extremely rare and especially in the 800 range. What I will agree with is that an 800 doesn’t always mean IBD. You could get a high value with an infection, bug etc. even the draining fistula could cause it. So not making scopes urgent for scopes and not changing therapy might Be an appropriate course of action.

14 is a very good level of Remicade. How long has he been getting infusions every 4 weeks? It could be that Remicade just needs more time.

Remicade has the best track record at healing fistulas so that is probably why the GI is treading lightly on switching meds.

Sorry, I also don’t agree on the EEN statement. EEN has much documented evidence at bringing kids to remission and healing the mucosa. What I will agree with is that it isn’t as effective in the colon or with fistulas as the small bowel. That being said my one daughter had all severe colonic disease and it worked beautifully. Her friend had UC and it even worked for her.

I am sorry you are having to wait for answers. The waiting is the worst part of this disease. Hang in there, you are doing a great job!
 
800 is pretty high and should result in more investigation and/or a med change. EEN works on perianal disease, too--it worked just as well there as at the ileum for my son.
 
Thanks for all the good info. I was surprised by the false positive comment as well. Specially that it was over a 1000 before we bumped up the dose. He is on the increased dose for 3 months now, and the calprotectin has dropped only slightly.
We have an appointment to see the doctor on 12/29. It is hard to go over all our questions by emailing. My hope is that the inflammation is caused by the draining fistula at the perianal area, specially that my son has no other symptoms than the one draining fistual. With my limited knowledge I feel an MRI can catch the inflammation at perianal area and not scopes. We will go with the scopes just to be sure.
 
When my son was hospitalized 2 years ago they did upper endoscopy, colonoscopy, MRE, pillcam, and MRI of pelvic. Only the MRI of Pelvic showed the inflammation in perianal area. All other scopes were normal. This time our doctor wants to do colonoscopy and pill cam. I’m thinking that colonoscopy and pill cam won’t capture the inflammation, if it is only in perianal area.
 
The problem is you won’t know if the disease has spread if they don’t look at the other areas
They need to look at the whole thing in your child case
Especially since the fecal cal was high
To verify it is only inflamed in the perianal area

my kiddo typically has had clean scopes since dx (few with minor inflammation once or twice )
The only thing that shows inflammation since he was placed on biologics is the terminal ileum (both on biopsy from scope and MRE imaging )
That said his Gi likes a full picture given kids change
 
Last night, I told my son that we have to do these procedures - didn’t go very well 😥 Do any of your kids talk with a counselor or a psychologist?
 
Yes, my daughter saw one for years who worked with IBD patients (and patients with other chronic GI illnesses). It was a HUGE help! She was very against seeing a psychologist but thankfully her GI insisted. It did take her some time to get used to the therapist, but she then saw her for 8 years! She still sees a psychologist but an adult one now.

I would definitely do the scopes and pillcam to see if there is inflammation in other parts of his bowel, where and how severe, but I'd also ask about the pelvic MRI given the fistula.

I would also not expect an FCP of 800 to be a false positive - unless of course, your GI means it could be from an infection or something like that - those are known to raise FCP. And I wouldn't rule EEN out though it can be VERY hard on teenagers and it sounds like your son is already struggling with coping with the disease. My daughter tried it at 16 and found it too hard. She did it again as a young adult and that time did it for 16 weeks, while it was very hard, she managed. Teens have to be 100% on board, since it's easy for them to cheat at school or while with friends.
 
Thanks a lot for the insight. He is catching a cold practically every month. He might even have infection at the site of fistula, even though he has a seton.
I was hoping to take advantage of the Holiday break and do all the scopes, but he does not want to do them now. I’ll ask our doctor to talk to him - having an appointment next week.
Yes, he is very frustrated with everything. Just being a teenager is hard, let alone one with having a chronic illness.
 
I think you need to switch from Remicade. Clearly it's not bringing inflammation down to normal levels, and it sounds like it's causing some troublesome side effects.
 
It’s infection season and I know a lot of people who don’t have IBD getting lots of different yuck. It’s a bad year for illness and if the fistula is getting infected just ugh!
I hope the GI can talk him into doing the scope over break. It is so much easier when they don’t have to miss school.
 
Just got back from colonoscopy. my son’s entire colon is inflamed. Just for the reference, he is on Remicade for almost two years, increased the dose to 10 mg/kg every 6 weeks since August, last time Remi level was at 14, with no antibody, cal protectin is fluctuating around 800 to 1000. His scopes all were normal before start of Remicade, and crohns used to be at perianal area. GI does not think that Remicade is working since the inflammation has spread. He is suggesting Skyrizi or Stelara. He is leaning toward Skyrizi as it has shown in clinical studies working better in colon region. There is no data on fistula for Skyrizi. My son still has no symptoms.
 
Oddly enough, my son just had a colonoscopy, too. He had perianal disease in addition to severe disease at the ileum, and neither Remicade nor Entyvio worked well. He had an ileocecal resection, and then even after that surgery there was still inflammation. So he went on Stelara (and was also doing EEN at the time, but he's now on a normal diet), and now everything looks normal in there.

So, I can put in a good recommendation for Stelara. However, if I had the choice I might choose Skyrizi because it's supposed to be more narrowly targeted as well as possibly more effective. On the other hand, Stelara has a somewhat longer track record.

Either one could be a great option.
 
Thanks! Fingers crossed and prayers for the next medicine to work. We have to wait and see if insurance approves Skyrizi. GI was saying they probably deny at first and he probably needs to appeal.
 
It does sound like he needs a med change since his disease has spread despite the Remicade. Our GI was also saying the data is better with Skyrizi vs. Stelara, but most doctors do have much more experience with Stelara since Skyrizi is so new. Everyone we have known on Stelara has needed it more frequently than every 8 weeks, which is always an insurance battle, so either way, I think you will have to appeal.
Good luck and keep us updated!!
 
He got the first loading dose of Skyrizi this past Friday. So far no reactions. On other forums, I'm reading others have a lot of joint pains and body aches on Skyrizi starting anywhere from the day after infusion to after completion of loading infusions and start of body shots. Im thinking i should have gone with Stelara that has been around for a while.
How has beed experiences of people on Skyrizi on this forum?
 
No reactions though, that's great so far. I think your son is only the first or second person I've seen on here starting Skyrizi, so I guess it's too early to see any trends from patient reports.
 
Thought to add an update in case someone would find this post helpful.
My son has been on Skyrizi now for almost a year and half and doing very well - no symptoms and no reactions :)
His CRP and Iron normalized the first few weeks after he started infusions. By the time he got to injections, his Sed rate was normal. Calprotectin took about 6 months from start of Skyrizi to get to the normal range, but was improving at each check. Lab/stool results are still good. His GI recommended to do scopes before he heads to college (out of State), and if everything is good, he can manage his care long distance.
We did the colonoscopy today, and he is in remission. I was crying when I heard the news.
I could not see this day back in 2020, when he was diagnosed and was 14. I am so thankful, praying for the medicine to continue working, and wish all our kiddos the best.
 
So glad to hear it is working
That is great that he found a med that works for his system
Hope he enjoys college
Mine did
Just ask for a script for zofran
College can be hard for the normal kiddo
Having a back of zofran is good just in case when far from home facing new challenges with a crohns stomach
Good luck
 
@WindingRs . Thank you for your story. I'm kind of in the same situation right now. My son was diagnosed with Crohn's exactly one year ago when he was 14 due to lack of growth and puberty. After colonoscopy and calprotectin level of 4000, he was started on Remicade every 8 weeks. Fast forward 6 months and he was doing very well, calpoprectin level of 90 and hemoglobin normalized and he grew about 6 inches.. HE had remicade levels checked in May, 5 months after starting Remicade (after I pushed for it) and remicade level was 3.9 and no antibodies. Due to no symptoms, doc decided to continue every 8 weeks. For the past month, I noticed my son having some skin issues and so I asked doc. We just got his calpoprectin levels back and are 1500!!! He is scheduled for colonoscopy in 2 weeks. He's scheduled for his routine infusion tomorrow as well as remicade levels.. My question is, is it better to increase the dosage or frequency, does it matter? Doctor said he has increased his dosage because he has been gaining weight and its being adjusted to his weight..
 
@kasia79 i am very sorry you are going through this. Yes, it is true that Remicade is weight based. But they can increase the dose/weight and reduce the frequency if needed. It has been a while since my son was on Remi, so i have forgotten some facts. Others with more knowledge can chime in if your son’s level of 3.9 is sufficient or low. My son started with 5mg/kg every 8 weeks. When through regular blood and stool tests we saw his inflammation markers are going up, they did a drug level/anti body test. Remi level was 1 and he had started building anti body. They increased the dose to 10mg/kg every 6 weeks. His Remi level went up to 14 with no anti body. At this level, he was still getting worse. His doctor’s opinion was that his levels are good, and he is not responding. That is why he suggested to change the medicine. He said we could try to change the frequency to every 4 weeks, at the same time he said time is not in our side. At this point we changed to Skyrizi. I hope you find the dose or medicine that works for you soon.
 
@kasia79 - yes Remicade dosage does change if your body weight changes. You mentioned 3.9 levels and calprotectin of 1500. 3.9 is a little on the low side. My son's GI likes to see levels of about 10. From our experiences, once the levels of Remicade are within normal range - 7 to 10 - the calprotectin levels probably will drop as well. I'm surprised the doctor didn't just increase the frequency or remicade dosage as your son is at the lowest dosage and highest frequency right now, and there is a lot of room for change. It sounds like your son is doing well on Remicade but perhaps an increase in dosage is required.
 
WindingRs said:
@kasia79 i am very sorry you are going through this. Yes, it is true that Remicade is weight based. But they can increase the dose/weight and reduce the frequency if needed. It has been a while since my son was on Remi, so i have forgotten some facts. Others with more knowledge can chime in if your son’s level of 3.9 is sufficient or low. My son started with 5mg/kg every 8 weeks. When through regular blood and stool tests we saw his inflammation markers are going up, they did a drug level/anti body test. Remi level was 1 and he had started building anti body. They increased the dose to 10mg/kg every 6 weeks. His Remi level went up to 14 with no anti body. At this level, he was still getting worse. His doctor’s opinion was that his levels are good, and he is not responding. That is why he suggested to change the medicine. He said we could try to change the frequency to every 4 weeks, at the same time he said time is not in our side. At this point we changed to Skyrizi. I hope you find the dose or medicine that works for you soon.
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Thank you. Glad he's doing better on skyrizi :)
 
Jo-mom said:
@kasia79 - yes Remicade dosage does change if your body weight changes. You mentioned 3.9 levels and calprotectin of 1500. 3.9 is a little on the low side. My son's GI likes to see levels of about 10. From our experiences, once the levels of Remicade are within normal range - 7 to 10 - the calprotectin levels probably will drop as well. I'm surprised the doctor didn't just increase the frequency or remicade dosage as your son is at the lowest dosage and highest frequency right now, and there is a lot of room for change. It sounds like your son is doing well on Remicade but perhaps an increase in dosage is required.
Click to expand...
THank you for your post. Yes, he did mention increasing frequency when levels were 3.9 but he said we can wait since he was asymptomatic (but he was never symptomatic in terms of GI symptoms) and now we waited and obviously there's more inflammation. I just hope he didn't develop antibodies :(.
 
Just to ease your mind a bit. My son's levels dropped to near zero with Remicade and the dose was doubled. Even at this level, he never developed antibodies. It sounds to be like a dose adjustment, but you're getting things checked out, and it'll all work out. My son's has been adjusted several times in the course of 6 years. It'll all work out.
 
kasia79 said:
with calprotectin of 1500, how can c-reactive protein be 0.02? still waiting on remicade levels
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Both fecal calprotectin (FCP) and especially C-reactive protein (CRP) are imperfect markers of inflammation, meaning that they miss some. My CRP has never been elevated no matter how inflamed my gut was. That test just doesn't work in my case.

It's also worth noting that FCP and CRP are measuring different types inflammation. FCP is a measure of the presence of activated polymorphonuclear neutrophils (a type of white blood cell) in the gut. CRP concentration is a general measure of inflammation somewhere in the body, not necessarily in the gut and not necessarily having anything to do with IBD.
 
CRP and FC are minimally invasive biomarkers. Like Scipio said, it is not uncommon that CRP is normal, but FC is not.

Mass neutrophils are recruited to intestinal tissue during crohn's disease inflammation, you can't measure the activated neutrophils themselves, but you can meassure FC, serving as a proxy measurement of how active they are. Since it's a fecal measurement, it can quite accurately indicate active inflammation in the intestine. There's some differences between disease location, FC is slightly better at measuring colonic inflammation, but imo it is very accurate in ileal disease too.

CRP is imo less accurate since many things can raise CRP, CRP is "nonspecific", and CRP is often normal even with active intestinal inflammation.

Every so years major institutions agree what the "target" in a treat-to-target Crohn's patient should be, where the patient is closely monitored.

Not every institution subscribes to this, not every patient is happy with this, patients have their own wants and worries, making that target shift. But many doctors want these base targets somewhat set in stone, numerical values to know what to strive for in a patient, and to avoid accusations of malpractice.

2015 was when there was a major revision of what that "target" should look like, CRP and FC were "downgraded" as you wish, as adjuntive targets. The reality is of course that no one wants a colonoscopy or MRI every few months. So for patients and doctors, the best minimally invasive method to monitor a patient, are these biomarkers.

"Clinical/PRO remission was agreed upon as a target for CD and defined as resolution of abdominal pain and diarrhea/altered bowel habit;andendoscopic remission, defined as resolution of ulceration at ileocolonoscopy,orresolution of findings of inflammation on cross-sectional imaging in patients who cannot be adequately assessed with ileocolonoscopy. Biomarker remission (normal C-reactive protein (CRP) and calprotectin) was considered as an adjunctive target."
 
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Does anyone know how long Promethius Remicade levels take to come back?.. It's been 10 days and we still don't have the results. I called the lab to make sure it was done and they assured me it was
 
UPDATE: my son's remicade level is 2.6 and no antibodies detected. he has been on remicade every 8 weeks at 5mg/kg.. doctor has not contacted us yet.. is it better to increase frequency to 4 weeks or increase dosage to 10mg/kg? He's in high school and I know he won't be happy with every 4 weeks but I'm grateful no antibodies. Thank you
 
There are various possibilities. The dosage can be increased at the same interval, although in my son's case, he remained on the same dose and the intervals was moved to 4 weeks. He had very low levels as well. Then it was moved to 5 weeks and now possibly 6. Usually the frequency is moved first, I think, but it is possible to increase the dose and keep the frequency.
 

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