Son May no Longer be Responding to Remicade - Options?

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Liz McK

Liz McK

Joined
Jul 8, 2014
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13
Hi my son has been on Infliximab for over a year, he got an infusion every 8wks & his crohns was still playing up, they changed his infusions to every 6wks & his health seemed to improve. He went into hospital to have a colonoscopy & endoscopy. Unfortunately his colon is really bad & now they can't decide if he has never been responding or he was responding but has now lost response. The reason this is important is this. If he is a responder that has lost response they would consider trying him with another adalimumab. If he has never responded all he has left is to get his colon removed & be left with a permanent non reversible stoma. You can imagine how distraught he is as he feels better & bloods are good but these drugs seem to be masking what's really going on internally has anyone found the same problem? He is 14yrs old & the thought of an operation & permanent stoma are terrifying him, this is the best he has felt In Such a long time & can't really understand why he would need this operation.
 
Liz Mck, my son was in a similar situation with the remicade. Over the span of remicade use he has had his remi upped, his schedule shortened and methotrexate added yet his disease silently progressed. We know, though, that he wasn't fully responding due to regular fecal calprotectin tests, scopes and imaging. His blood work has always been normal and he is showing no outward symptoms of active disease.

We are discussing surgery as well though due to his disease location it won't be a colon removal.

There is a study posted that shows that primary and secondary non responders of remicade have achieved remission on humira, not everyone but a certain percentage. I don't remember the details but will try to post the link if I can find it.
 
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He has been on Infliximab for 1yr now the doctor can't decide if he has never responded or was a responder who has now lost response. This drug has masked what is really going on in his colon. All bloods are good except for iron, & infliximab levels high but his colon is a mess. The strangest thing is that this is the best he has felt in 4yrs but it's the worst his disease has been.
 
What a big decision! At such a young age I would lean towards trying a different med first. Could your son do the 8 weeks Modulen plus the other med to give it the best chance of helping? Whatever happens, I hope it helps quickly
 
Liz Mck, during the time he was on remicade the GI didn't run a fecal calprotectin stool test? This is one of the ways my son was assessed since his blood work is always normal. It can show levels of inflammation in the bowels only.

Since my son's disease was progressing while on remicade even though he shows no symptoms of his active disease at this time we have stopped remicade and are awaiting another test to determine if we will go forward with surgery or look into other meds.

My son was a primary responder to remi in that his subsequent tests shortly after starting(scope, imaging) showed the disease was less active also at the time he started remicade he had horrible symptoms pain, mouth ulcers, night fevers which resolved after the first dose of remi. But, as time went along he would still flare and it didn't matter if we tweaked schedule or dose. Eventually, even though he felt fine testing showed he still had simmering inflammation and progression of disease. His remicade levels were always good and his antibody tests always came back negative.

I hope you find some answers soon and please read through the link I posted in the above post.
 
I have printed your link off to read. He has been on Modulin feed but they pulled the gastric tube at 6wks as he kept throwing up, couldn't keep the feed down even when pump was dispensing at its lowest.

I did get a message from someone who's doctor agreed to try a flagyl/cipro antibiotic combination. This is something that I haven't heard of but will ask.

He's back at hospital Monday for iron infusion so will speak to IBD nurse.

He has had all blood work done before every infusion, he handed in samples for cal protect sample for inflammation. His liver results were good. Only when he got his MRI did it find the liver disease & the colonoscopy & endoscopy highlighted how bad his colon was.

This is the hard part, at the moment this is the best he has felt, getting to school etc although he doesn't really leave the house after school. Just can't believe after 4 yrs of treatment the disease has got worse instead of better.

He had his 1st Reiki yesterday & he was very impressed. Will try anything. Xxx
 
What about something like Stelara (which is a completely different biologic, not a TNF inhibitor)? It's not approved yet for Crohn's (but will be soon) but is approved for psoriasis. There a number of parents on here with kids on it (off label).
 
Thanks for that I have never heard of this drug Stelara (Ustekinumab don't think it is used in the UK but I will ask. Thank you A New drug that's just been licences hear is Entyvion(vedolizumab) I have asked about this drug as well. It is used for adults with moderately to severely active ulcerative colitis or Crohns.

I just want to cover all options before agreeing to any surgery
 
Is on something with the Remicade? There are some kids that do better with a combination -- my daughter for example. She has been on Humira + methotrexate, Remicade + methotrexate, and now Remicade + Imuran.
 
Big hugs ...
Its hard to tell after the fact .. If they didn't run anything ,
DS is on humira- he reacted to remicade after 8 months.

Has he tried an elemental formula ( elecare , neocate etc...)?
Some kids can't handle the semi elemental formula .

Izzismom went through all the drugs with her little one .
Ended up using tacrolimus as a bridge therapy for surgery but it worked so well she still uses it two years later .

Brian's mom also went through most of the drugs - I will tag her .

Is he in only remicade or remicade and an immunomodulators?
How are his vitamin levels including vitamin d?
 
At the moment he is on Infliximab infusion every 6wks (highest dose + mecaptopurine they are thinking of changing hi to adilibimab but consultant is swaying towards surgery, I'd like to try all options 1st. I'm being told that the risks are outweighing the benefits on the biologic
 
I do understand the frustration of him feeling good, yet the disease rages on. My son, C, has said on several occasions that CD has no rhyme or reason and he gets frustrated that he feels so good yet his disease progresses.

Entyvio is one of the meds C's GI has mentioned though his group is still wrangling over it due to some j code insurance code that can make it hard for some patients to be approved for. Of course, that wouldn't be the case in the UK. Stelara is another that has come up for us.

I may have missed it but what liver disease did the MRI show?

We have a thread with pediatric research article you may want to browse:

http://www.crohnsforum.com/showthread.php?t=43002
 
He was diagnosed with Primary sclerosing cholangitis, if was found when they did an MRI to look at the small bowel he is now on Urso for this, there is no cure, only a liver transplant. At the moment tho it's his Crohns that is the problem. How old is your son? How long has he had Crohns? It really is strange how they can feel good but be so ill.
 
My son is 17, he will be 18 in 2 mos. He started having symptoms at 14 and was dxed 6 months later at 15.

I'm so sorry to hear of his PSC dx. There is one parent here that has a child with CD and PSC, he stops in from time to time, Dexy is his user name.

It is so strange how their disease can be active with no symptoms, especially when you've seen ugly flares where their symptoms are through the roof!

C hangs out with friends, has a summer job, is living a normal teen life except that at night he puts in his ng tube to get supplemental formula then removes it every morning.. Inability to gain or maintain weight is his one outward symptom but the EN takes care of that and is providing him with the weight and nutrition needed if we decide on surgery
 
I am so very sorry to hear about your lad Liz McK. :ghug:

Since there is no clear cut answer as to whether your son is a responder or not I personally would want to move to another biologic with a solid plan action as to what is a reasonable length of time for results to be apparent. This is assuming his colon can stand a delay such as this.

Thinking of you and sending loads of luck your way! :heart:

Dusty. xxx
 
Liz, My son responded well to first dose of Remicade but on dose 3 had the allergic response. He went immediately to Humira. It seemed like we were in remission for a year and half.. But like your son things may have never been doing good after all... My son had little growth, his crohn's in his lower large bowel seems to have gotten worse- and after several colonoscopies it showed that to be the case. (And GI's also said maybe he never was in remission after all). In 2013, because there was nothing else available, they switched my son to Cimzia... then added MTX. Things have gone downhill since. We did an Ileostomy surgery in March. He's feeling better (By way of cramps and eating again) but his inflammation markers haven't come down. And now we are struggling with wierd fevers and mouth ulcers. So Long story short.... the GI doesn't think the TNF drugs are helping my son. Lately they have been discussing vedolizumab also. I have brought up Stelara to them, but they have never acted like they were interested in that one. Last I heard from the GI nurse is that she is trying to see if our insurance will approve the Vedo. She said if they do approve it then the GI at Mayo Clinic will decide if we should go that route. Not sure if this helps you... but it seems like for some people TNF biologics aren't the fix. We have been on them for a long time... but mainly because there wasn't anything else.
 
Thanks Kathy, your situation sounds very similar to ours. Thing is because of his age & going through puberty they want to do surgery to give him the best chance of growing into a healthier young man.

Another reason, is the length of time he has been on these drugs, they keep saying that the benefits are outweighing the risks.

The issue I have is if the operate & remove all of his colon they are not saying he will get off the infliximab or other drugs he is on, not a 1st anyway. So in my eyes he is going through life changing surgery & he will still have the risks of being on these drugs.

They did mention adilibimab for 6 months then do another colonoscopy. If there was no change then our only option would be surgery. Another parent has said that there consultant prescribed antibiotics along with the adilibimab which made a huge difference to the inflammation so gonna ask about that.

I hope your son feels better soon. It's so difficult watching them suffer. Like they say when our children hurt, we bleed. Good luck xx
 
Liz McK said:
Hi my son has been on Infliximab for over a year, he got an infusion every 8wks & his crohns was still playing up, they changed his infusions to every 6wks & his health seemed to improve. He went into hospital to have a colonoscopy & endoscopy. Unfortunately his colon is really bad & now they can't decide if he has never been responding or he was responding but has now lost response. The reason this is important is this. If he is a responder that has lost response they would consider trying him with another adalimumab. If he has never responded all he has left is to get his colon removed & be left with a permanent non reversible stoma. You can imagine how distraught he is as he feels better & bloods are good but these drugs seem to be masking what's really going on internally has anyone found the same problem? He is 14yrs old & the thought of an operation & permanent stoma are terrifying him, this is the best he has felt In Such a long time & can't really understand why he would need this operation.
Click to expand...





My son is 12 years old he has a stoma and in six more months they will reverse the stoma. his colne is healing itself.
 
Just to clarify, I believe Brian's Mom's son had a diversion ileostomy where he has a bag "temporarily" while they wait to see if his colon will heal on it's own. I think this is also what kfalcom73 is describing.
 
Glad to hear your sons colon is healing, great news. We have been told J will need all removed except a small part of anus left so it will never be able to be reversed & he has to look on it as permenant :-(
 
Did they explain it to you in any more detail than that? Are they saying they've found pre-cancerous cells? They might have called it dysplasia. does he have polyps?

If they have found dysplasia then that would explain their reluctance to go ahead with any further immune-suppressing meds.

I hope you get more information from them at your next appointment. I suggest you write a list of questions, in order of importance, and take it with you (if you don't already do this).

A memory aid for discussing treatments is BRAND:

B - what are the Benefits of the treatment
R - what are the Risks of the treatment
A- what are the Alternatives to the treeatment
N - what if we do Nothing
D - Decide

All the best
 
Patricia56 said:
Just to clarify, I believe Brian's Mom's son had a diversion ileostomy where he has a bag "temporarily" while they wait to see if his colon will heal on it's own. I think this is also what kfalcom73 is describing.
Click to expand...

Yes this is true. It is a diversion becauce his rectum and sigmoid colon looked really bad. It's still in there. They are hoping with diversion it will heal and also with new medicines coming down the pipeline something will help so that he can keep his large bowel.

I think Queen Gothel's daughter had her large bowel removed and is now experiencing trouble in the rectal stump.

I also am wondering what you mean by cells changing.
 
This was our 1st visit to see surgeon & consultant. It was quite a shock & I have asked for a full report with the findings & also what their proposing as I knew I wouldn't be taking in as much as I needed.

I did ask about a stoma to rest the colon & was told No. The inflammation would still be progressing whether or not there was a diversion.

Also asked about a J pouch, but they didn't favour it for Crohns & said it would probably get infected & he'd need further surgery to then remove it & he would then need a bag.

Even asked about stem cell transplant but said No. To high a risk of mortality & this was the safest option.

What I don't understand is if there is inflammation from the rectum all the way to the small bowel & there saying they have to remove it. Why would they leave a stump?

I have had so much information & suggestion & papers past to me, I have started to compile a list of questions & also alternative treatments that have worked for others.

The cell thing is a bit vague. I would have thought if they were showing change then why would they even go down the route of maybe another go with a different biologic? That's if they can work out whether he is a responder or someone who has lost response??

Phew!!! Just want the correct answers to the corrects questions so that I make the correct decision. Thanks again for everyone's input. I feel I'm bit as alone in this minefield xxx
 
Liz,
Sorry you and your son are going through this. It is very tough. Hopefully they will give you the reports to read through and then it will clarify some things. Once you get those reports please feel free to come on and ask questions about them there are a number of medical people on here that can help with understanding them. Keep us posted.
 
Let's assume that cancer is not an issue. If it is then doing a colectomy is probably your best course of action because he is still going to need to be on immune suppressing meds long term.

So we are left with whether it makes a difference if he was a responder or a non-responder.

My opinion is that this question is irrelevant. In either case he may respond to a new biologic like Humira or Cimzia when he did not respond to Remicade. There is also Thalidomide and Tacrolimus that could be tried as well as LDN.

If he is not losing tons of blood and needing transfusions then it seems to me that you have time to try additional medications, if necessary bridging him on prednisone until it's reasonable to expect them to kick in. (sorry can't recall if pred works for him)

And you might want to clarify why they can't/won't do a diversionary ileostomy at the same time he's trying different meds. It would be in addition to meds not instead of them.
 
Hi Liz, so sorry to hear all your son is going through. I have no experience or advice to offer, but I'm wondering if it might be worth getting a second opinion before such a big, and permanent decision is made. Perhaps you've already had one, and I'm sorry if I missed that. My thoughts and prayers are with you.
 
I haven't had a 2nd opinion yet. One minute his bloods are fine the best he's felt on Infliximab. Then they do his yearly colonoscopy & endoscopy & we are taken in & given this news.

I have had so much help & information from his sight, I will collate everything & make a list of questions, hopefully there is something or some idea that they haven't thought off & may be willing to try. I will exhaust every avenue before I agree to this.

I believe I still have time to try another biologic, make sure they've checked for C diff etc.. Think about an antibiotic, talk through why other surgery options aren't relevant.

Just wish I could take you all with me, with your advice
 
Hi Liz I would agree that second opinion may be a good idea. Infliximab and 6mp didn't work for Lucy, my GI was really reluctant for her to have any kind of surgery so decided to try humira and methotrexate (she was 4 at the time) he did not expect it to work as nothing had and she continued to get worse despite all the meds, but guess what it worked and has been life changing. Good luck with your decision
 
So glad it worked for your little one, must be such a relief. I am going to suggest he is put on adilibimab & methotrexate, also gonna make sure all the test have been run for other infections & also suggest an antibiotic, waiting on MRI should be in the next two weeks. He's just received IV iron Monday, spent all day in bed with sickness, he's on ondensatron for the sickness, so fingers crossed he will get the benefits of the iron soon.
 
Humira can work where Remicade doesn't. Also, adding a 2nd immune modulator, like 6mp or mtx to the equation may boost the Remicade effectiveness. The combo is what helped my son.
 
Thanks Jen, I would like to give him 6 months on Humira with 6mp at lest then I will have tried all the drugs available in the uk. This might just be the one that starts to work for him.

Waiting on MRI for small bowel, so will keep you all posted on our progress.

Thank you all for your advice help & opinions, really helped me so much xx
 

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