Infliximab not working?

[melody3612]

Hi, I'm new to this forum and I wanted to ask a question for other people with crohns.

I'm 14 and I've had crohns since I was 10 (Diagnosed at 12)
In November 2020 I went into hospital for 2 nights cause of an intense crohns flare up, which caused infliximab to be brought forward and then given to me (along with an emergency dose of 40mg prednisolone) in December 2020.

I was given 1 dose, and I became constipated for 5-7 days and then went to the toilet and everything came out, in an extremely painful time consuming way.
And then I slowly started to bleed again, but by the time it got decently bad I was given another dose of infliximab.
I realised that this happened every single time I had infliximab, Until April 2021 and I got very sick again, bleeding, going up to 10 times a day etc.
It was found out that I had completely metabolised the infliximab, So they gave me 2 doses instead of 1.
Which just made the previously mentioned symptoms a lot worse and more severe.
And now I'm thinking of stopping the infliximab, cause its doing more harm than good, My calprotectin is still around 1.5 thousand.

I'm wondering if anyone knows what's going on, Or if anyone else has had this issue with infliximab.
Thanks.

 

[westernbuddy]

Infliximab only has around a 60% success rate If I recall.

Your young that is very admirable for you to be researching your health and asking questions, keep up the research and learning. You will be advising all of us soon.

Have you had colonoscopy endoscopy recently,? Do you have strictures?

Has your doctor talked about changing biologics, or doing elemental 028 or modulin ibd.

You should also rest assured, that you will get better, we all have a major flair and get worried, but we all end up in remission working studying and socialising with friends like normal, it can just take some time and working on, but then remission can last a very long time.

 

[my little penguin]

So I am a mom of a kiddo with crohns - he is 17 .
Diagnosed at 7
He took infliximab (remicade )at age 8 to 9
Tagging other moms here
@crohnsinct
@pdx
@Pilgrim
@Maya142

do you know if they ever did any imaging of your intestine mri or ct?

have they tried miralax (movicil ??) ?
Did they give you any other meds with infliximab such as methotrexate?
Or have you try formula only (no solid food such as modulen or forstips ,peptamen jr etc )?

my kiddo has crohns but has to take miralax daily or like you it will be multiple days of not going abd then a ton of pain all at once
He has been on infliximab (remicade ) humira and now Stelara
But he still takes miralax daily and this prevents the constipation problems

hope that helps

 

[pdx]

I'm sorry that you're having such a rough time. My daughter is 19 now but was also diagnosed at 12. She started on infliximab right after diagnosis but it took more than 6 months for her to get to remission. She ended up needing to do EEN (formula only) for several months, to add budesonide for several months, to add methotrexate (which she still takes), and to increase her infliximab dose several times. Her intestines finally healed enough so that just infliximab and methotrexate were enough to keep her in remission, and she's been doing pretty well on that combo for 7 years now, with occasional increases in her dose.

Like MyLittlePenguin's son, my daughter also suffers from constipation and needs to take a laxative called Lactulose every day or she has a lot of pain.

I wouldn't give up on infliximab yet. But see if you can use a gentle laxative to avoid the painful constipation, and you may need to add some additional treatments to help you get to remission. Good luck--I hope you find something that works well for you!

 

[Maya142]

I'm so sorry to hear things have been so tough! Are you located in the UK or the US or somewhere else?

My daughter was diagnosed at 16 and is now 24. She was put on Infliximab and Methotrexate. She is like both @my little penguin and @pdx's kids - she also tends to be constipated though sometimes she has a lot of diarrhea. When she's constipated, she takes Miralax daily. It's an osmotic laxative which means it just pulls water into the colon and doesn't cause any painful cramping.

It took my daughter a while to respond well to Infliximab. We had to increase the dose from 5 mg/kg to 7.5 mg/kg and then 10 mg/kg and also increased the frequency of infusions to every 4-5 weeks. That's the good thing about Infliximab - you have room to change the dosing and the frequency. It took her 2 infusions before she felt better at all and I think 4 infusions before she felt good - but we had to up the dose before she felt good. It sounds like they've increased your dose, but it's possible with a Calprotectin that high that you need more frequent infusions.

Have you discussed your issues with your GI? That's where I would start. There might be an easy fix like adding a laxative like Miralax after you have Inflixmab infusions so that you don't get constipated. Or you may need to take a laxative regularly.

The constipation issues may also stem from complications caused by Crohn's - a stricture for example. Actually, even severe inflammation at the end of the colon can cause constipation. So it's really, really important to discuss this with your GI. It is possible you need another medication, but I think first your GI has to figure out what's going on and why.

Hang in there!!

 

[melody3612]

@westernbuddy
Hi, I had a colonoscopy in February 2020 which was when I got diagnosed, And only when I started bleeding.
I was put on modulin in summer 2020, After I was bleeding and going 10+ times a day, But I struggled a lot and I was still going very frequently, So I was put on another emergency dose of 40mg of prednisolone.

I have 2 doctors, 1 male and 1 female. My woman doctor is pretty confident in the Infliximab, My male doctor is starting to think they may have made a mistake with the Infliximab, But so far there's been no talk about anything else.

@my little penguin
Hi, I was in remission for about a year when I went gluten and lactose free, In December 2019 they did an MRI scan of my entire bowel.
It showed up as normal and healed, I haven't had one since.

They were going to put me on miralax, but then the constipation stopped and I began going around 2 times a day, Which is still continuing.
They haven't tried methotrexate yet, But I will ask about it and its benefits.
I'll ask about the miralax, and its benefits.

@pdx
Hi, Thank you for sharing your daughters experience. I'll be sure to ask about the medication your daughter was put on and see if it'll work for me.

@Maya142
Hi, I'm in the UK.
I'll ask about all the things you mentioned, And I'll make sure I don't have a stricture.
I had an ultrasound in April 2021 to check for a stricture and it came back negative.

Thank you all for the help I really appreciate it.

 

[Maya142]

They were going to put me on miralax, but then the constipation stopped and I began going around 2 times a day, Which is still continuing.
They haven't tried methotrexate yet, But I will ask about it and its benefits.
I'll ask about the miralax, and its benefits.

So has the constipation stopped? And now you're having 2 BMs per day? I'm a bit confused - I thought your major issue was the constipation following your Infliximab infusion for 5-7 days, which has worsened with the higher dose of Infliximab. Is that the symptom you're worried about or is it something else, like bleeding?

Sometimes when you are really inflamed, you metabolize Infliximab much faster than normal - that's probably what's happening to you now, which is why they doubled the dose of Infliximab. You want to have a steady level of Infliximab in your body at all times - that helps with disease control and also makes it more likely that you won't make antibodies against the Infliximab, which can cause loss of efficacy. Typically when they check your Infliximab levels, they also check for antibodies, so it's good that your doctor is checking.

Since there are so few approved medications for Crohn's, it's important to use each one for as long as they work - otherwise you run out of options very quickly. So far, in the US (and in the UK as far as I know), there are several biologics approved for Crohn's: Remicade (Infliximab), Humira (Adalimumab), Cimzia (Certolizumab), Stelara (Ustekinumab) and Entyvio (vedolizumab). Of those, the first 3 are very similar and block the same molecule that causes inflammation - Tumor Necrosis Factor. So they're known as TNF inhibitors or anti-TNFs. If you respond to one, usually you do respond to the other. Of those, only Infliximab and Adalimumab are approved for children's with Crohn's. Then there are two other biologics with different mechanisms - Ustekinumab and Vedolizumab which block different inflammatory molecules. They aren't approved for kids yet, but are used when there are no other options.

I'm explaining all this because the fact that there are so few biologics for Crohn's means that you really want to exhaust every drug before you move on. That's probably why one of your doctors wants you to stay on Infliximab - she probably thinks that the benefits outweigh the side effects.

However, clearly Infliximab isn't doing enough for you if you are still bleeding, your calprotectin is 1500 and it's also causing constipation. But the constipation issue can be easily controlled with something like Miralax. Generally, in these cases where there is partial response, you either increase the dose of the drug, the frequency of infusions or both or you add another medication like Methotrexate or 6MP. Or if there is no response at all or it's causing more harm than good, then you switch to something different, like ustekinumab or vedolizumab.

I hope this information is at least somewhat helpful. Good luck and definitely talk to your doctors honestly!! They should address all your concerns. Let us know how it goes.

 

[westernbuddy]

You have inflammation there that isn't settled.
You need testing for infliximab antibodies by the sounds, see what the levels are they can run some tests to see what's happening with infliximab, don't stop before talking with the hospital.

Prednisolene 40mg for 14 days then taper at the same time modulin 100% no food for 6-8 weeks, harsh I know but this can bang crohns into remission.

Always go very steady on prednisolene don't lift heavy things don't work out its not great for bones.

Even better than prednisolene iv steroids in hospital they only do this when going to a and e, but if your bleeding prednisolene is not absorbed, so by giving iv it is.

Then of course there is other biologics, if you have no strictures or abcess or fistula medicine is the path to remission.

But the best thing to do is call the ibd nurses at the local hospital and get there expert guidance.

And do update on what the nurses and doctors advised here.

 

[melody3612]

Hi everybody, Sorry for the late reply as I've been busy.

I had my second dose of infliximab on the 23rd of august and my third colonoscopy is on the 14th of September.
My doctor is gonna get the results from that and then decide what to do, as he doesn't believe the infliximab is right for me.
My azathioprine was 75mg and was increased to 100mg because I was metabolising it too quickly, although I'm still have the symptoms I've mentioned beforehand so I'm not sure how its helping.

I will update you all about my results as soon as possible.