My 12 year old son has just started Humira...

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

N

njprrogers

Joined
Dec 18, 2009
Messages
84
... and I was wondering how long it would take to start working. He has what looks initially like Ulcerative Colitis but could be Crohn's disease as I have Crohn's.

He got started 10 days ago. I have my fingers and toes crossed that this works as he has failed on EEN.
 
There is a parents group here
https://crohnsforum.com/forums/Parents-of-Kids-with-IBD/
Failed EEN?
Een didn’t work or he couldn’t stick woth it ?
Ds was dx at age 7 (now 16)
He was on een multiple times
And humira for over 5 years
Humira takes 3-6 months before its fully effective
So as most things in Gastro land a long time

is your kiddo on steriods as a bridge therapy until humira kicks in since until then inflammation will be there ??

my kiddo is currently on Stelara and mtx
Stelara take 6-12 months to be effective so it was closer to 8 months of steriods while waiting for Stelara to kick in ....

try the parents group lots of parents there
 
Thanks for the response.

Unfortunately, poor Jude has type 1 diabetes since he was 7 and steroids are really problematic. They make you insulin resistant and leave you with extremely high blood sugars.

He really needs some kind of bridging therapy but for now we are just waiting. He would have started on infliximab which would have worked quicker but they are reluctant to bring kids into the hospital in a COVID environment. So, humira it is. And we wait with fingers crossed.

He couldn't really tolerate the een. He was going to the toilet after every shake and was miserable. He also lost 2 kilos in the 8 days he was on it. I wish he had stuck to it. It's a side effect free get out of jail free card in some respects even though it's hard going.
 
What shakes was he using? There are various levels. Boost and Ensure are the least "broken" down formulas, easiest to tolerate flavor wise but the hardest for the kids to digest. @my little penguin knows all the official terminology and types. I have seen quite a few kids fail on one type of shake but do really well once they move along the spectrum to the most broken down formulas. Those however, taste worse and the kids usually end up using an ng tube for them.

I am surprised your hospital is avoiding infusions like that. Most GI recommendations is to keep going with infusions and the centers are away from Covid units and very well monitored, cleaned etc. Especially in the pediatric centers.

My daughter also just started Humira. She had her first loading dose 2 weeks ago and her second loading dose yesterday. No improvement yet. But I know it takes time.
 
Hugs
What I know of adults with diabetes and crohns - shakes as een are not recommended either due to high sugar content and causing blood sugar spikes
Some kids don’t tolerate semi elemental shakes (causes too much diarrhea) but can tolerate amino acid based -elemental formula - that said - that is harder to drink orally - my kiddo did it but most need an ng tube .

steriod option - depends on where the inflammation is located
Uceris can help just the colon -less is absorbed Systematically but it’s not benign

so in his case it’s a balance
There is the crohns exclusive diet
Which sometimes helps in some kids
As a bridge

fingers crossed he will have some relief after his second loading dose

remicade infusions can be done by home health
So no need for trips to the hospital

Hope humira helps soon
Is he on the adult dose (40 mg every 2 weeks )?
 
We were using Fortisip shakes. There are lots of flavours but he settled on Chocolate as the only one he would keep going with. I'm based in Ireland and I think we have Ensure here too. I had a couple of the rejected flavours as well and I thought they were fine. How I would feel drinking them in flare and without any solid food, I can't really say. I think if Jude was a year older he might be able to tough it out but it was a hard auld slog and he was miserable.

Our pediatric gastro centre here is in Crumlin Hospital, Dublin. They are participating in the multi centre CDED trial that is going on at the moment but (there is often a but!) all clinical trials are suspended for COVID. I was very interested in trying that but it wasn't on the table. Anecdotally, it is getting similar results to EEN. In Ireland, they administer the infliximab in the hospital still. The attraction of humira is that you can do it in your own home.

Jude had his 160mg loading dose a 10 days ago and will get his 80mg second dose on Monday. He'll be on 40mg bi-weekly after that.

Anyone try Modulen? Does it add anything extra?
 
Poor kid. Like it isn't miserable enough to be out of school during all this nonsense, then you are not feeling well and then they ask you to give up all food and drink disgusting shakes. I feel for him and totally agree that sometimes it just isn't worth making them so miserable as the stress could only make things worse.

I will say though, that when my older daughter did EEN at the same age of 12, she also had liquid for a while. Liquid in/liquid out is what we were told. But at some point, I think she started to heal and things got more solid.

I know Modulen is a popular brand for EEN in Europe. We haven't used it so I can't say on flavors, success rate. etc.

Sounds like he is on the adult dosing of Humira as that is what my daughter is on. They are practically on the same schedule. She just had her second dose of 80mg yesterday. I will let you know if/when we start seeing any signs of improvement.

CDED is just diet so if you could get the literature on it, it wouldn't hurt to try it. Not as a sole treatment but as an adjunct to the pharmaceuticals to help things along. My girls are on SCD. I am on a Facebook group and it is pretty much split between who it helps and who it doesn't. It seems to have better success (CDED also) after a trial of EEN. Better success with small bowel disease. Better success in those who had success with EEN. So far, my girls are having very little response to it and we are doing it 1000% strict. But it is something else you could possibly try.

One other miscellaneous thing to throw out there. Sometimes, when you have a bad IBD flare it throws the microbiota all off. For some after the flare they are left with SIBO. SIBO causes diarrhea and many of the same symptoms as IBD so it may seem like you are not getting better based on symptoms but blood and fecal tests could show that your IBD is actually getting better. Did he have any testing to determine the formula wasn't working? This probably isn't the case with him but thought I would throw it out there in the off chance.

Hang in there mama! You are such a great advocate for him and he is lucky to have you!
 
So... this is quite interesting. Last Monday week he went into hospital to get his Mantoux test results and his first shot of Humira. He was really very poorly. He'd lost 2 kilos (4 1/2 pounds) the previous week on the EEN which was on top of 4 kilos in the previous 3 or 4 weeks. He couldn't take the shakes without vomiting and was really weak.

That day we gave him some solids and started back on food over the next 2 days. He had this bounce, went from 8+ BMs a day to 3 or 4 and had a huge appetite. Looked and felt much better.

That lasted for a week. Initially I thought that maybe the Humira had given him a kick but the more I read about it the more that seems unlikely in such a short time. I now wonder if the EEN was working and we just hadn't given it the time (and Jude couldn't get the nutrition as he couldn't keep them down). Maybe the previous week had been more liquid in, liquid out than his IBD symptoms not improving. He had no tests in between to confirm one way or another.

Yet another IBD mystery to ponder!

I hadn't heard of SIBO (I've had Crohn's for 36 years myself). Very possibly a factor. Jude had lots of mouth ulcers which magically cleared up towards the end of the week on EEN even as his general condition looked to have dis-improved.

Thanks for all the feedback by the way, it's great to bounce this stuff around.
 
Forstips is polymeric formula
Modulen is similar to peptamen jr in the US semi elemental so broken down more
Tagging @polly13 also in Ireland (I think )
 
You are so sweet to ask. Unfortunately, getting worse. Not admit to hospital worse but I think he now knows better so she is getting lab work done today.

How is your son doing?
 
Oh no! Poor pumpkin. Not eating just makes it all worse cause then body has to fight fight fight and losing weight starts the inflammatory cascade.
 
@crohnsinct he had a rough day yesterday. Just hoping today is better. We're keeping a diary for the hospital and will get back to them on Monday.

We'll be 3 weeks into humira on Monday. The hospital are just telling us to wait. Basically, there is nothing they can do in between.

Frankly, it's excruciating!

How is your daughter getting on? Are you seeing any effect? I see 4 - 8 weeks most regularly cited but I am sure it is individual like everything else in Crohn's
 
Her labs almost all came back in range. Just CRP is increasing. It is really fecal cal that we watch with her and we didn’t pull that one. She gets that when she gets infusions GI just wanted to make sure she wasn’t getting anemic or dehydrated because that is when we usually have to admit her. C diff came back negative.

GI brought Entocort back up to daily and it seems to be helping with bleeding. Waiting for frequency and consistency to improve.

I know your son can’t take prednisone because of diabetes but what about Uceris or Entocort? They aren’t as systemically absorbed. Work more topically. O had been on prednisone for a really long time and started having high blood sugars and signs of diabetes but since we moved her to Entocort she has been better. But I know Jude has diabetes so it might be different for him.

It can take a long time for treatment to kick in at the beginning. For O it took 6 months on Remicade before we saw any symptom reduction.

I just really wish there was something they could use to bridge him to Humira working. Poor kiddo.
 
I just realized that you say your son has what looks like Ulcerative Colitis and that you have Crohn's in the rectum and lower left side. You guys sound the same as O! Although when dx'd she had disease throughout her entire colon and a little in the T.I. The T.I. has been mild to moderate but it is really the sigmoid and rectum that just won't calm down. I see you failed Remicade, Humira and Entyvio. Sounds just like my girl. Humira was recently added as Entyvio isn't doing it. So now you are controlling disease on Imuran and asacol? That is so interesting. I know med GI's don't like to add azathioprine and rarely use asacol for Crohn's but I have been wondering for quite some time if added one of those wouldn't help her.

Things that make you say hmmm.....
 
@crohnsinct Yeah, I had a bad time of it about 15 years ago. Had fistulae and went through all the biologics (at the time). It took a few years to get right but with steroids, imuran, asacol (probably useless but they put you on these things and they are reluctant to take you off) i got on the right track. I've had crohn's for 36 years since I was 12 and I travelled all around the world, worked in 4 or 5 different countries over a particular 10 year period and spent most of my adult life well and relatively healthy. THERE IS HOPE. Something I try to remind myself of even during these toughest of days.
Also, we have more medical options these days, a neighbour of mine was in a bad way with Crohn's, sent to the surgeons but opted to go on a phase III trial of Ozanimod a couple of months ago and he is thriving. He's put on about 20 pounds!
 
How are things going with the Humira now? It took Humira about two to three months before I started seeing any kind of improvement and it was a couple of months after that before I started feeling like myself again.
 
njprrogers said:
So... this is quite interesting. Last Monday week he went into hospital to get his Mantoux test results and his first shot of Humira. He was really very poorly. He'd lost 2 kilos (4 1/2 pounds) the previous week on the EEN which was on top of 4 kilos in the previous 3 or 4 weeks. He couldn't take the shakes without vomiting and was really weak.

That day we gave him some solids and started back on food over the next 2 days. He had this bounce, went from 8+ BMs a day to 3 or 4 and had a huge appetite. Looked and felt much better.

That lasted for a week. Initially I thought that maybe the Humira had given him a kick but the more I read about it the more that seems unlikely in such a short time. I now wonder if the EEN was working and we just hadn't given it the time (and Jude couldn't get the nutrition as he couldn't keep them down). Maybe the previous week had been more liquid in, liquid out than his IBD symptoms not improving. He had no tests in between to confirm one way or another.

Yet another IBD mystery to ponder!

I hadn't heard of SIBO (I've had Crohn's for 36 years myself). Very possibly a factor. Jude had lots of mouth ulcers which magically cleared up towards the end of the week on EEN even as his general condition looked to have dis-improved.

Thanks for all the feedback by the way, it's great to bounce this stuff around.
Click to expand...
I face a very similar situation with EEN, basically any formula I try, I go on to have liquid diarrhea, posted about it here: https://crohnsforum.com/threads/een-makes-things-worse-any-advice.87362/#post-1052556

did you ever figure out the solution to this riddle? maybe liquid in liquid out and feeling shit is normal in the beginning for some of us?
 

Similar threads

B
Another biologic to be added to Humira?
Replies
1
Views
242
my little penguin
my little penguin
C
Your thoughts, please. 10 yr old.
Replies
12
Views
807
wenkren21
W
P
How long on EEN before your child had solid motions again
Replies
5
Views
652
padrach3
P
K
This has destroyed my life.
Replies
27
Views
2K
kephra
K
S
Two year old with symptoms
Replies
22
Views
3K
J100
J

Latest posts

Back
Top