Infliximab failure - Stelara next

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

N

njprrogers

Joined
Dec 18, 2009
Messages
84
Hi again :-(

So, my son started infliximab last year after failing on EEN, oral & IV steroids and Humira.

J got to remission after a few months on Infliximab. He took a while to get going and was receiving it every 4 weeks. He had about 3 months clear before it stopped working about two months ago.

He had an emergency scope last week and he has pan colitis and some inflammation in the ileum. There is still discussion as to whether it is UC or Crohn's amongst the docs.

He started on Stelara on Monday. The docs were going to prescribe Tofacitinib but the ileum involvement has made them change to Stelara as Tofacitinib does not show great efficacy in Crohn's.

So, J is in a bad way right now with no way to bridge the Stelara. Antibiotics were mentioned by one of the GI team as a possibility, does anyone know the options there? I think it would be a cocktail including Flagyl.

Regards

Nick
 
Hi Nick - so sorry that your son isn't doing well at the moment. Can I ask what dose of Remicade was your son on every 4 weeks? I am asking because my son needed 10 mg/4 weeks for it to be totally effective. I don't have experience with Stelara but I know there are parents on this forum who do, and hopefully you find the answers you are looking for. @my little penguin @crohnsinct @Maya142 will probably have more experience in this area. I hope your son start feeling better soon.
 
How often is his Stelara and dose ?
Stelara can take 8 months to start working
Ds needed Stelara at every 4 weeks -90 mg
Have they added oral steriods while he is on stelara and een at the same time ?
Sometimes one is not enough by itself
But ok when you in combination until you get the inflammation down
Definitely worth asking for the combo .

What formula did he use for een previously?
Polymeric (boost ensure )
Semi elemental (peptamen jr peptide )
Or
Elemental formula (Neocate jr ,elecare jr ) are amino acid based and only need a few inches of healthy intestine to be absorbed
Elemental would be worth asking to add to Stelara
Since it is the easiest on an inflamed gut
Even if it just lets the gut rest (minimal waste is produced since amino acids are what the body breaks good down into )
Most need a tube to use it
Ds drank his but he was a very determined 12 year old trying to avoid a tube at the time
His is 17 now and used Stelara for almost 4 years
 
He does take a second biologics (different auto inflammatory condition) and methotrexate
Methotrexate is used to boost the Stelara
Which works well
 
Can he take tacrolimus? That is often given to calm a flare if you can't take or are non responsive to steroids. Don't look up the safety profile it will only scare you. There are plenty of people kids included who use it and if you are talking short term it isn't as scary. O used it anti didn't help her but it didn't harm her either.

Can he take budesonide? If I remember correctly his issue with steroids is diabetes. Budesonide isn't as systemically absorbed so wondering abut that.

Another bridge option is rectal therapy. It won't go very high but it will at least help the sigmoid/rectal areas and help at least that portion and maybe help Stelara do its job at title faster/better. Give it a fighting chance.

YES, YES, YES on the antibiotics. O used them and had a good response. I will also say that I am a member of an SCD group and there are many kids on there who are on drugs, and the diet and facing colectomy and the antibiotics helped them. The thing with antibiotic therapy is what works for one doesn't always work for another so you have to keep trying different combinations. O has tried so many combos but the last one really helped and I dare say when we dc'd one of the antibiotics her flare got a lot worse.

I am surprised at their entertaining Tofa and also interested at the dropping of Remicade so fast without trying to add an immunomodulator but what's done is doe and the docs know a thing or two.

Stelara is showing good promise in colonic activity and since he also has small bowel involvement it makes sense. Did he have antibodies to Remicade/. If not, then Humira is also a good option for coverage in both areas.

One other option is Stelara doesn't heal the colon is double biologics. It is easier to get an infusion drug and an injection approved. Are you in the US? If so the insurance route is different for infusion (goes through medical) and injection (pharmacy)and they don't always talk so easier approval than say two infusion drugs for the same condition. O is currently on Humira and Entyvio and antibiotics and budesonide and SCD.

CDED shows a lot of improvement for kids who failed multiple drugs and are heading to colectomy. I actually know one kid who avoided colectomy and is using that diet as their only management of the disease. They are watched very closely and have had great labs, fecal cal and scopes every year. But it has an EEN component to it so that might not be an option if it messes with his diabetes. Perhaps there is a registered dietician who can help you find a formula?

Gut rest does help in acute flares. Is he inpatient?
 
Wait a second! I responded before caffeine! They are thinking he might have U.C. so that means no small bowel involvement. In that case, I am really confused because Entyvio would be the go to drug in those cases.

But I just double checked and there was some inflammation in the TI? Are they thinking backwash ileitis from UC? Did they biopsy it? Are they planning an MRE or pill cam? I would really want to be sure the small bowel is not involved before I let them say U.C..
 
Hi,

J initially didn't get levels on the infliximab initially but by the end he was up to 16 so it wasn't the amount of infliximab... he didn't have significant antibodies, it just stopped working.

J tried oral steroids last year and they had no impact on his inflammation unfortunately. He also had the IV methyl pred. It just didn't work. Same for EEN... the funny thing is I think that a combination of EEN would help a lot to reduce inflammation but he is refusing to drink the shakes. He was on Fortisip shakes.

The GI team are sending me a script for antibiotics tonight. Crossing my fingers and toes.

Yes, J has type 1 diabetes but the issue with steroids is that they don't work, to be honest. That said, we did seem to get some joy from enemas so he is taking prednisolone foam.

I'm in Ireland so the GI team and prescriptions are centralized but they are less cost conscious than U.S. I think (Tofa is eye bleedingly expensive - more than two biologics methinks).

So, they don't know if it is backwash ileitis from UC or Crohn's... to look at, it's stronger than the blush you get from backwash but the biopsies still say UC.

I'd love to do some dietary stuff but the patient is less than accommodating. He is so desperately ill now that we have narrowed the diet down to something not a million miles from CDED. I'd chop off my leg for him to try the shakes.
 
Forstips is polymeric off I remember right ....
Modulen is the semi elemental
And neocate jr would be the elemental version (I believe they have there as well )
Is he opposed to an ng tube ?
Then he gets the shakes in but doesn’t have to taste them ....
Teens can put it in at night
Run the feeds while they sleep by pump
And pull the tube in the am
Rinse repeat
 
Would he consider tube feeds? One of my daughters did EEN twice by drinking and her third time just couldn’t stomach it and she tried an NG tube and she said that was soooo much easier. She kept the tube in for 6 days and just hooked up at night then during the day no pressure to drink. She would take the tube out to play softball one day a week.
 
I can mention it to the GI's but it's not something that they have suggested. Also, he's been in the hospital for a week up to Monday and it wasn't suggested.

One additional thing which is causing huge stress and discomfort is the fever J has been running for the last couple of weeks. It's especially prominent after sleeping and can sometimes ease off after that. All we have is paracetamol to treat it and that really isn't cutting it.
 
Second the fevers from inflammation. O gets fevers all the time when things are bad.

It is so weird to me that they wouldn't suggest gut rest either by EEN, tube feed or in extreme case a PICC line while inpatient. O always gets a PICC line as soon as she is admitted but she usually loses a lot of weight also by the time she is admitted.

Our GI will allow ibuprofen for fevers. There are a lot of GI's now who are saying it isn't really that bad for IBD just don't use it often. But I would never tell you to go against what your GI says and given his severe flare state you should stick with the paracetamol. Come to think of it, we never really treated O's fevers while inpatient, even when she was septic and running 103-105 temps. They really just concentrated on treating the cause.

Poor guy. I hope something kicks in soon for him. Definitely ask about tacro, lots of other people had really good luck with it. O just didn't but luckily she still responds to prednisone.
 
Yeah, he had a couple of poop tests to check for CDiff etc. Poops were smelly so there was a suspicion that something bacterial could be going on.

So, we're going all out on the antibiotics it would appear

Metrinodizale (Flagyl - I had this one myself after a fistula operation about 18 years ago)
Amoxicyllin
Vancomycin
Doxycycline

Interested in Vancomycin... has anyone used it or got experience of it? That's a new one by me but seems to put some ppl into remission. It's considered a 'high tech' drug here in Ireland which is just a category for more expensive medicines.
 
Yes, O used vanco. She used just vanco and then she used it with the others you mentioned. It didn’t work for her. BUT she was in a really bad flare and just coming out of sepsis so maybe the timing wasn’t right.

The cocktail she is in now is doxycycline,flagyl and amoxycyline. Although we recently dc’d doxy because she was feeling icky and not eating and GI thought that was the culprit. She is now doing antibiotics two weeks on and two weeks off.

You might recall from O’s thread that we were discussing colectomy and she would not agree to it. Antibiotics were our last ditch effort and her decal cal came down to 100! She stopped taking them and budesonide for abot a week or two (college kid forgetting and thinking she knows better) and her fecal cal shot up to 2200.

So while they didn’t work before it seems they are doing something now.

Did they test for CMV during scopes?

Did you ask about tacrolimus?

Good luck!
 
That's all good to know. Hopefully they will help J out. I am so glad that O is hanging on in there. Seems like she is on the same as J minus the vancomycin. It's nice to think of O as going to college and living her life - it can be difficult to see into the future when your 12 year old is so desperately ill.

Steroids not working makes J super vulnerable to a colectomy. Fingers crossed this does something. It will give us a bridge now and into the future.

J was an in-patient for the a week up to Monday and saw 3 different gastros on the team in the children's hospital. It was the last Doc he saw that suggested antibiotics. We'll see how that plays out and I'll mention tacrolimus.

The good news is that after two wretched nights up every 2 hours, J slept through to 6.45 this morning. Fingers crossed for continued improvement.
 
Wow! That is amazing progress and super fast considering Stelara is so slow acting.

If he truly has UC another option is cyclosporine. But UC even increases the likelihood of the suggestion of colectomy.

O started losing her response to Remicade in her junior year of high school. She still did everything she wanted. Ran cross country, indoor track, spring track, swam USA Swimming, got great grades the whole enchilada.

By the time she went away to college she was in a full on flare. The severity of the flare has increased and decreased and she spent about a month in the hospital but she is going to graduate this year...with honors...and is going to grad school.

I think it is harder on me than her!

She is on Entyvio which I am surprised they didn’t transition your son to if majority of his disease is in the colon and they are thinking UC but I would trust the docs. At least you know there are more options and a ton more coming down the pike! That’s one reason I think O’s GI is letting her fight colectomy so hard. So many promising new drugs. It would stink to remove her colon months before they hit the market.
 
My son took Vancomycin couple of times for C-diff infection. It did wonders. He had recurring C-diff infections & the only drug that worked for him was Vancomycin. Hope your kiddo feels better really soon 🙏🙏
 
I would definitely consider tube feeds. My daughter also found them a lot easier than forcing herself to drink the shakes. She inserted her NG tube every night (sounds MUCH more intimidating than it really is - at our children's hospital, kids as young as 6 have been taught to insert their own tube) and removed it in the morning so no one at school had to know. She was a teen when she started tube feeds. Eventually, in her case, it became clear that she needed tube feeds long-term to keep up her weight. She became severely underweight for a while when she was resisting a tube and developed complications - including an arrhythmia.

So then eventually she had a tube surgically placed in her stomach. That was 6 years ago. She still has it and there are periods where she is able to stop tube feeds because she can eat enough and times she absolutely needs it. I should add that in addition to IBD, she has a motility disorder, and that's partially why she needs a tube long-term.

She is also on 2 biologics - she has severe arthritis as well as IBD and an anti-TNF like Remicade just wasn't enough for her arthritis, though it worked for her IBD. She is now on a JAK inhibitor like Tofacitinib (Xeljanz) as well as an anti-TNF. The combination worked very well for a while, but it seems to suppress her immune system so much that she has had infection after infection. She had 8 infections in 2020, including C.Diff and E.coli. And now has had C.Diff twice in 2021.

She doesn't really have any other options (she has failed everything for her arthritis - it is so bad that she has prosthetic joints and she was only 22 when she had surgery to replace her joints. So she is stuck on this combo till something else is approved. But the infections are making it a hard drug to be on, since she flares with every infection.

She has been on 2 biologics before - an anti-TNF and an IL-17 inhibitor. With those, she got maybe 1 infection a year, if that. She's been on double or triple or 4x times the normal dose of pretty much every biologic she's been on. Never had any issues except on this combination. Even when she was on 20 mg/kg of Remicade every 4 weeks ("high dose Remicade"), no infections.

A recent study found safety issues with Tofacitinib, so honestly I'd try other options first before going to that.
 
Just to give everyone a heads up, J has continued to improve.

The antibiotics (or the Stelara giving a hit after 6 days - seems unlikely) have really had a profound affect. The fevers stopped the very next day, the pain went from an 8 to a 2 and J's appetite has returned in a big way. His poops are now brown and he is going maybe 5 times a day, down from 12-14.

I don't really know what the anitibiotics have done or which one has worked or how we have got here but I am grateful to have a cease fire.

J has a ten day course to finish and we will see where we are then. The gastros maintain we should see some effect from the Stelara by the 3 week mark.

Thanks for all the advice on the feeds, we'll keep it in mind. J is still underweight so trying to feed him up before hostilities begin again!
 
That is fantastic! I never had that good a response to antibiotics but in our SCD circle many have.

As our GI explains people with severe refractory Crohn’s have a really messed up microbiome. You have to use antibiotics to attack E. coli, anaerobic bacteria and aerobic bacteria. Thus the cocktail. So it is a synergistic effect.

I hope things keep getting better and better but fair warning a lot of people for whom antibiotics work that well for, need them long term and as soon as you dc treatment the disease kicks back up. But you can try to decrease and alternate and drop one etc. it’s a marathon.

I am so glad your GI is up in the most recent and was willing to try.

Yeah there is a lot of literature out now that if there is no response to Stelara by week 6 the makers say move on but our GI says he has too much real world experience and too many people take a really long time to respond.

Love your humor bye - the hostilities begin!
 
Raising hand here !!!
Took Ds 8 months
Granted that was when they upped to dose to every 4 weeks instead of every 8 ( which probably turned things around ) but
Definitely not 3 weeks
Glad he is improving
 
Possibly worth asking about if a course of probiotics would help when the antibiotics finish. From what I understand, some antibiotics are great at killing the bacteria but then leaves a kind of empty playing field for hostile bacteria to grow back as the good bacteria who compete with them also killed off.
My son’s gastro recommended a specific one (when they didn’t know what was wrong and it turned out to be gluten intolerance) I’ll look it up.
 
L reuteri protectis by Bio Gaia
He was very little at the time though, maybe 2? So might be a different version better for your little one.
 
our Gi has Ds on daily visabiome (prescription strength -double )
Used to to be vsl#3
For him it helps
Others maybe not
We tried stopping it(not covered by insurance) but Ds got worse so ...
He has been on it for many years now
 
Thanks for all the advice on the feeds, we'll keep it in mind. J is still underweight so trying to feed him up before hostilities begin again!
Click to expand...
LOL, sounds like you have a teen like mine - very stubborn and determined! I will add (to give you a light at the end of a long tunnel) that my daughter's sheer determination and persistence have helped her stick with school - she is a chemistry major at a very competitive school and is now a senior and she will hopefully graduate at the end of the spring semester or the summer. She is on many, many medications (about 20, given all the other conditions she has besides IBD), has faced many, many difficulties while trying to do her degree - 13 hospitalizations while in college and 10 surgeries.

But she has persisted - even doing a chemistry lab in a motorized wheelchair because she cannot stand for 5 hours - and I am certain she will graduate, even if she has to take another semester. She has had to take longer than the usual 4 years for college due to her medical conditions, but she is doing it. And we are, so SO proud of her and what she has done given the challenges she has faced.
 

Similar threads

P
How long on EEN before your child had solid motions again
Replies
5
Views
652
padrach3
P
C
Can't turn around a flare - advice
Replies
15
Views
2K
crohnsinct
C
M
Infliximab trout concentration very high, no antibodies but has diarrhea
Replies
27
Views
3K
Maya142
Maya142
N
Stelara reducing in efficacy or just flare?
Replies
22
Views
3K
crohnsinct
C
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top