Treatment not working???

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Crappy Dad

Joined
Nov 20, 2020
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Hey guys! Hope everyone is doing well!! It’s been a few months since we posted. Our son started the Remicade loading phase in he middle of December.Got his 2nd dose at the end of December and his last at the end of January. Just took him back for his 8 week infusion last Friday and just got some of the bloodwork back.. His Sed rate went from 9 to 21 and this was his Remicade levels we got back:
Infliximab level: <0.8 mcg/ml.
Infliximab ADA: 58 AU( this was flagged high)
Is this normal for just starting or from y’all’s experience does it look like he is rejecting it? Not sure if this matters, but he had to take an antibiotic for 10 days for sinus infection and was on day 9 when we went for infusion....
Thanks!!
 
The ada number is drug antibodies against remicade
Meaning his body is fighting the drug
The other number means he has next to no remicade left in his system at 8 weeks
Which would explain the body fighting the drug

your child Gi will talk to you
Some add extra meds to help
Others increase frequency (every 4 or every 6 weeks ) or increase dose amount or all three
 
My daughter had that exact situation 5 years ago--low infliximab levels and positive antibodies. If the antibodies are too high, it can mean that you have to stop remicade. But in my daughter's case, her doctor increased her remicade dose and added methotrexate and the antibody levels dropped back to zero, and have remained at zero for the last 5 years. It's really common to need remicade dose adjustments in the first year, and it's rare for a kid to be able to go 8 weeks between infusions. I don't think the sinus infection would have any effect on the levels, but it might have caused the increase in sed rate.
 
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My daughter was on combo treatment (remicade + methotrexate) for the first year after diagnosis, and then her doctor had us try stopping the methotrexate. After about 6 months, she was in a flare, and that was when her remicade levels came back low, and with antibodies. We added methotrexate back at that point, along with an increase in remicade dose, and her flare ended (and the antibodies disappeared). We've stuck with the combo treatment since then. Some kids get by just with an increase in remicade levels, but we figure why mess with something that is working for her. Something else in my daughter's case was that she developed Remicade-induced psoriasis when we stopped the methotrexate, and that went away once she was back on it.
 
We just got a voicemail from the doctors office. Our doctor is out, so another doctor looked at his labs and said that we will have to find a new medicine, that his body is rejecting the Remicade. Does this mean he will reject all biologics?

Thanks
 
Odds are in your favor that he will be ok with the next biologic
Remicade is murine protein (mouse) based
It has a higher risk of producing antibodies
Humira is humanized lower risk
Ds had an allergic reaction to remicade -basically his body really fought the drug
He was perfectly fine on humira for over 5 years
And now on Stelara for the past almost 4 years

so there is hope
Add in Ds is very allergic to everything -multiple drugs , life threatening food allergies and regular pollen /bee allergies
But Ds was still ok on the other biologics after remicade

good luck
 
Thanks for positive info!! Our son also has some allergies as well. ( nuts, eggs, pollen and a few others). Hopefully he will have the same results as your son!! We really appreciate you always responding back!!! Hope all is well with y’all!!
Thanks again!!
 
Right
My humira program will send you one for free
Then you just call or click online and they will send a mail safe return box to return any full containers plus send you a fresh empty as often as you need

most places otherwise will not take your full sharps container
This way the needles get incinerated and you don’t have it stuck at your house
Containers fill up fast when it’s every 2 weeks
 
Wishing your son all the best with humira. It has been a life changer for my daughter right from the first treatment, the difference after the first couple of injections was very effective. Humira put her in remission and has kept her that way for over three years.
 
My little penguin- We will definitely check on the sharp program once we get the approval from insurance!! Thanks for info!!
Lizzyg- thanks for well wishes and glad your daughter is doing great!!! Hopefully, we will have the same results!!
 
Hope everyone is doing well! Update: The Humira seems to working ok. We just got bloodwork back and his Humira level was a little low 2.9 and his antibody level was around 130 so we are increasing to 40 mg every week instead of every other week.. All his other bloodwork came back great! However, his lasted MRE showed the inflammation that was in his Ileum last year is still there and the doc feels it has turned into scar tissue. The doctor is recommending Ileocecal Resection to remove the scar tissue.. She said that over time it will continue to get narrower and recommends doing to give him a fresh start before he moves over to an adult GI.( will be 18 in June). Has anyone been through a similar situation?
Thanks
 
Hmmm. What makes the doc say it is scar tissue? Was that a radiologists opinion? I would want to know for sure if the inflammation is scar tissue or just plain old inflammation. If it is inflammation then a change in drug therapy might work and no surgery needed. Where as scar tissue you definitely have to do something about. Either a balloon dilation or resection etc. But before I agreed to surgery I would want to know for sure. Especially given the Humira antibodies and lower levels. Maybe moving to every week will help. Fingers crossed!
 
She said since it hasn’t improved since last years MRE it has scarred. We are waiting on a second opinion from CHOP
 
Ummm ok? How about Humira isn’t working? How is this not an option? I think the CHOP consult sounds like an excellent plan.
 
I want to add that yes, ongoing and long term inflammation can lead to scar tissue but not always. My daughter’s TI has been inflamed for 5.5 years now and no scar tissue. Just meds not working.
 
Do you have a fecal calpro rectum? That’s a better indicator of intestinal inflammation. If that’s low then scar tissue moves up on the list if suspicion.
 
The doc hasn’t done one since he was first diagnosed last year.. I really don’t understand it, he hasn’t had any active symptoms since he was first diagnosed and put on prednisone for about a month while starting biologics.. He rejected the Remicade and that’s how we got to the Humira.. Thanks for help, we are still trying to understand it all!!
 
Yeah second that ^^^
please get a second opinion
My kiddo has thickening on MRE at dx of the TI
That was at 7
Next scan few years later it was gone
Last scan two years ago
It was back
No surgery
Just different biologics at different times
Some better than others at getting all the inflammation gone
 
crohnsinct said:
Do you have a fecal calpro rectum? That’s a better indicator of intestinal inflammation. If that’s low then scar tissue moves up on the list if suspicion.
Click to expand...

One thing to note about fecal calprotectin: in the US it is FDA approved only for helping to distinguish IBD from IBS, in other words for diagnosing IBD. It is not approved for monitoring the degree of inflammation present in a case of Crohn's that has already been diagnosed. Not so in Europe. In most European countries it is approved for both diagnosis and monitoring.

Docs in the US are free to order it for the "off label" use of monitoring, but there is always a risk that the insurance company will not pay, since it is not FDA approved for that. So in the US if your doc is not routinely following your disease with fecal calprotectin testing, s/he may just be following the rules, or maybe is trying to prevent you from getting hit with a big lab bill, rather than neglecting your care.
 
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Thanks @Scipio just another reason for O to stay in pediatric care even longer!
Most pediatric GI’s are using calpro these days as a non invasive bio marker and about 3-4 years ago insurance companies started covering it for monitoring purposes for pediatric patients. But you are definitely right we had that problem at the beginning. Good for dx and moving to scopes but after that it was on our dime.
 
Thanks for all the input/info!! We heard from CHOP today and we are going to wait and see if the increase in Humira helps. Maybe heading to CHOP for a visit in the spring! Thanks again for all the help!!
 
Honestly, if you live close enough to CHOP, I'd consider switching because their pediatric GIs keep kids through college (till 22 to 24, depending on the doctor) and they tend to be better at treating and understanding the challenges young adults with chronic illnesses face, especially at college. They have an excellent pediatric IBD program and do a lot of research on pediatric IBD.

To me, it doesn't make sense to deem it scar tissue without seeing if weekly Humira makes a difference. So the wait and see plan makes sense. Also, considering he has made antibodies to both Remicade and Humira, has your GI brought up MTX? It's often used to prevent antibody formation. Upping Humira will certainly help trough levels, but just because he's now made antibodies to two biologics, I would really consider MTX. It may also help control his Crohn's.

I also would not say the narrowing in his small bowel is scar tissue simply because he has no symptoms - it's very possible to have active inflammation without symptoms. In fact, there used to be a parent on here with a teenage son who was asymptomatic but had such bad inflammation in his terminal ileum that it was basically a giant ulcer.

A Fecal Calprotectin would definitely give you more information about whether there is intestinal inflammation. As others have said, ESR isn't very specific. Has he had scopes recently? If the doc recommended an ileocecal resection, I'm guessing at least part of the stricture is in his terminal ileum? That can be reached by scopes and perhaps biopsies would tell you what is really going on.
 
We live in South Carolina, but are planning a road trip to CHOP in the spring.. Any recommendations on any place closer?? The only scopes he had was when he was first diagnosed last year. (The colonoscopy never got completed because she had trouble getting it to go around one of the curves in his intestines) the Thanks for info/help!!
 
Crappy Dad said:
We live in South Carolina, but are planning a road trip to CHOP in the spring.. Any recommendations on any place closer?? The only scopes he had was when he was first diagnosed last year. (The colonoscopy never got completed because she had trouble getting it to go around one of the curves in his intestines) the Thanks for info/help!!
Click to expand...

For a place closer to SC you may wish to consider Children's Healthcare of Atlanta. It's not qute as famous as CHOP or Boston Children's, but it has a perfectly capable pediatric IBD program. Dr. Kugathasan is a prominent pediatric IBD specialist.

https://www.choa.org/medical-services/gastroenterology/inflammatory-bowel-disease#meetourteam
 
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I second the CHOA recommendation. They re really top notch and a great center. WE tried to get my daughter in there when she went to college near there but she was too old at the time.
 
Also if you are willing to look at adult care UNC Chapel Hill has a really good adult IBD center. Iforget how old he is...maybe I am confusing my members. Forgive me if he is still little.
 
We were told yesterday to avoid adult Gi care (kiddo turns 18 soon)
Most pediatric Gi keep crohns patients until 26
Ours does
And some will start to see young adults as new patients until 21
Then keep them till 26
We just switched Rheumatologist due to age to a transition clinic for ages 14-26 with a pediatric rheumatologist.
 
Most pediatric GIs see IBD patients till 26?? That's new! Ours (at the same hospital) kept patients till they were done with college. If that was at 21, they transitioned then. My daughter would have stayed till 24 (our ped. GI didn't keep patients past the age of 24) but she moved 2 years ago and so M moved to adult care. I have to say though, we absolutely love her adult GI - M actually likes her more than her pediatric GI!!

I don't think all adult docs are bad - we've seen some great ones, some good ones and some truly awful ones. Some are really great with young adults and others are not. But we've found that the same is true for pediatric docs. We saw an awful ped. GI at Boston Children's - I remember him saying that he only saw IBD patients till 21...but oddly enough the rheumatologist we saw there said he saw patients till 26. So I guess it must really vary.

I will say that hospitalizations during COVID have been easier at pediatric hospitals because a parent can stay the night. Not all adult hospitals allow that, though they do make exceptions. So that does make surgeries a lot easier. Pediatric hospitals also tend to have more resources - such as psychologists who work specifically with kids with chronic illnesses. And Child Life. And they do make tests like MRIs more comfortable because they often have movie goggles which help distract both little kids and young adults!

I would try CHOA - I've heard really good things about it. Generally if you get in before your child turns 18, then they will keep you as long as they keep young adults - till 22 or 24 or 26 etc. But if not, I've also heard great things about UNC Chapel Hill.
 
Ok guys, we have taken your recommendation and have an appointment with Dr. Kugathasan at CHOA on December 8th! We are also still trying to take a road trip to CHOP in April. Wanted to ask for the kids on Humira, how often do your docs check the Humira levels? Thanks again for all your help!!
 
My son has been on Humira for around 18 months, and his doctor checked his trough level/antibodies 3 times. The first two times were when he was showing signs of a flare. She told us that many insurers would only cover it if it is "diagnostic" in purpose, so basically only if something seems wrong at the time. The first time she checked was when he'd been on Humira for around 3 months, and his trough level was good and no antibodies, and the Humira just hadn't fully kicked in yet. The second time was 3 months ago when he seemed to be flaring up again, and his trough level was low, with antibodies present. She increased the Humira to weekly and added methotrexate, and then checked his levels again last week. The trough level is back up, but unfortunately he still has antibodies.

So for our doctor, it seems there is no set interval that she regularly checks levels at, just when there seems to be a problem.
 
Crappy Dad said:
Ok guys, we have taken your recommendation and have an appointment with Dr. Kugathasan at CHOA on December 8th! We are also still trying to take a road trip to CHOP in April. Wanted to ask for the kids on Humira, how often do your docs check the Humira levels? Thanks again for all your help!!
Click to expand...

There are two different schools of thought on when to check for drug and antibody levels (therapeutic drug monitoring or TDM). What WiscoMom describes is "Reactive TDM" - which is checking when there is a problem: symptoms or bad colonoscopy or other reason to think the disease is getting worse. "Proactive TDM" is when they check at regular intervals regardless of whether the patient is getting worse or still doing just fine. The thinking behind Proactive TDM is that you can detect a rise in antibodies and/or a drop in drug level before the disease gets worse and thus they can boost the drug and/or immunomodulator dose to head off a flare before it even starts - thus preventing further damage to the gut.

Insurance companies, in their typical short-sighted view of thr world, don't like Proactive TDM because they have to pay for more testing, ignoring that the extra testing might be preventing far more costly treatments and surgery later.

The issue is not settled in the scientific literature yet. There are some papers showing that Proactive shows a net benefit and others showing that is doesn't. Right now actual practice tends to split along big city vs. local community lines. Large medical centers with prominent academic GIs on the staff often practice Proactive, and local community GIs tend to practice Reactive. And there are some old school GIs who don't test at all. And some insurance companies won't pay at all for either one, since none of the current drug and drug antibody tests is FDA approved.
 
^ that thanks @Scipio This testing is expensive so insurance likes to skirt paying, however, depending on the lab they are using to run these tests, they might write down the costs. Also the drug companies sometimes cover one levels/antibody test a year so that is an option as well.

In short, our experience across three different GI's, although all associated at major teaching hospitals, test yearly AND whenever there is a concern ie: symptom increase/inflammation found on surveillance tests.
 

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