• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

How long to wait for Humira to work before moving to new Biologic?

My Daughter is 17 .She was diagnosed March 2016 with severe Crohns particularly in Terminal Ileum and beginning of Large Colon.She was started on IV Remicade and did very well for 5 months until Antibodies developed.She was started on Humira Jan 3 WEEKLY because of severity of disease without much benefit yet.We don't want to move on to a 3rd Biologic prematurely.How long do people wait for Humira to kick in before moving on to Stelara or Entyvio?Thanks for ANY input
 
Last edited:

Maya142

Moderator
Staff member
It really does depend. My younger daughter is one of the kids that took forever to respond and actually, she did not improve at all until we moved Humira from every other week to every week and added Methotrexate.

But once Humira worked, it was like magic!

Is your daughter also on an immunomodulator like 6MP or Methotrexate? They are used to prevent antibody formation AND to help control the disease. Many GIs use them in combination with a biologic, particularly for severe disease.

Is she also on steroids while you are waiting for Humira to kick in? The other option is Exclusive Enteral Nutrition or EEN - a formula only diet for a certain number of weeks to induce remission. Some kids are able to drink the formula, other kids use NG tubes. It is very successful - it actually works as well as steroids for inducing remission and better than steroids for mucosal healing.

I'm going to tag some other parents who have kids on biologics - my little penguin, Clash, pdx, Kimmidwife, Jmrogers4, crohnsinct
 

my little penguin

Moderator
Staff member
Ds takes humira every 5 days and they added mtx as well.
Humira can take a minimum of 3 months to start to work and took Ds 5-6 months to be completely effective but that was due to changing from the kiddie dose to the adult dose .

Are they putting her on mtx to stop antibodies from forming ?


Also is she using steroids or een (formula only ) as bridge therapy until humira kicks in ?

Entivyio takes 6 months as well
Not sure in Stelera time frame
Ds had reactions to remicade after 8 months and has been on humira for 5 years
He was dx at age 7 and he is currently 13
Good luck
 

Maya142

Moderator
Staff member
We were told the same about Stelara - it works slowly, about 5-6 months. Entyvio can take even longer - I have heard people say up to a year before they really felt its full effect.
 
I so appreciate all your comments .She is on Prograf .5 mg 2x daily to stop Antibody production because she is not a good candidate for MTX or Azathioprine.She was started on Prednisone 30 mg daily Wednesday after 4th dose of Humira because Enterocort(Budesonide) wasn't doing squat. and will be tapered to 20 Mg daily for 1 week starting tomorrow then 10 MG for 1 week....PS WE contacted our GI Doc tonite about the EENdiet and she said it works better in people with mild Crohns but we may institute it anyway
 
Last edited:

my little penguin

Moderator
Staff member
That's a fast taper for pred
Ds system does not handle fast tapers well
Typically it's 5 mg a week drop
But Ds sometimes requires slower than that

EEN has been studied for a long time
And as effective as steroids in some cases
Ds has done it 3 times and stays on partial en to support his growth and keep biologics more effective longer (only a few studies but if it helps ..)

He drinks neocate jr orally
He has used peptamen jr in the past
And some kids use boost or ensure
The key is no solid food only formula
No other drinks or candies etc..
Typically it's 6-8 weeks of een
 

my little penguin

Moderator
Staff member
Exclusive enteral nutrition involves the use of a complete liquid diet, with the exclusion of normal dietary components for a defined period of time, as a therapeutic measure to induce remission in active Crohn’s disease (CD). This very efficacious approach leads to high rates of remission, especially in children and adolescents newly diagnosed with CD. This intervention also results in mucosal healing, nutritional improvements and enhanced bone health. Whilst several recent studies have provided further elaboration of the roles of exclusive enteral nutrition in the management of CD, other reports have provided new understanding of the mechanisms by which this intervention acts.

From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462720/
 

Maya142

Moderator
Staff member
By diet, do you mean EEN? There is quite a lot of research on it and it's used as a first-line treatment in many other countries. It's very effective in inducing remission, but isn't really used for maintenance (not that that matters since she is on maintenance meds anyway).

The big reason doctors in the US don't use it much (though it is used in pediatrics more often now) is compliance.

We tried many different formulas. Boost and Ensure are the most palatable, but they are also the hardest to tolerate. After that, semi-elemental formulas like Peptamen Jr and Pediasure peptide are usually tried. They are easier to tolerate but aren't the best tasting.

Finally, elemental formulas (completely broken down) are used last. Neocate Jr and Elecare are the two that are used a lot. Some kids do manage to drink them, but many needs tubes for them because of the taste. My daughter tried very hard to drink Neocate over several months and just could not get enough. She eventually went to a tube and gained a lot of weight and felt MUCH better. Now she says that having a tube is WAY better than drinking the formula.

That is a fast taper for pred - especially if you have not seen results with Humira yet. Most GIs will say you should see some improvement in the first three months, though it may take longer before you see the full benefit. I would guess she will either need Prednisone or EEN for a month or two longer to give Humira a chance to kick in.
 
She won't stay on Prednisone long because it makes her chubby/self conscious and moody/depressed.She is a feisty teen,big shocker...She is also on Boost and Ensure and has been on Liquids only for parts of past 2 -3 weeks including 3 days in Hospital
 

my little penguin

Moderator
Staff member
Unfortunately those are common side effects of steroids
But if the humira or any other biologic isn't fully effective yet (again these take months not weeks )
Then you have to start on steroids all over again due to flaring unless your on een
 

Maya142

Moderator
Staff member
Poor kiddo - my teen feels the same way about steroids. She loves that they work so well but she absolutely hates the side effects.

Would she be willing to try EEN? It is 6-8 weeks without food. Unfortunately, everything in the IBD world works slowly, besides steroids. It is definitely tough but many kids are able to do it. Since she is a teenager, you definitely need her to be completely on-board before you try it.

If she's only been on Humira for 3 weeks chances are that she is going to need something else to keep her from ending up in the hospital while you wait for it to work. Typically that is steroids or EEN - I can't think of any other options.

Did she do the Humira loading dose (4 shots on day 0, 2 shots on day 14)? My daughter has been on Humira twice and the time she did the loading dose, it kicked in much faster than when she just started at the regular dose.
 
She was loaded with 160 mg week1 80 mg week 2 40 mgweek3 and 40 mg week4,she is due next 2 Weds for 40 mg each time...Her PedGI and AdultGI work together well and are both excellent. They think think that accelerated dose should work or we should move on.She is getting a trough Humira level this Wed before Humira and will get an Antibody level if her levels are low....She wants to start EEN as soon as tomorrow at least partially
 
She was loaded with 160 mg week1... 80 mg week 2.... 40 mg week 3 and 40 mg week 4,she is due next 2 Weds for 40 mg each time...Her PedGI and AdultGI work together well and are both excellent. They think that accelerated dose (over 6 weeks rather than 12 weeks) should work or we should move on.She is getting a trough Humira level this Wed before Humira and will get an Antibody level if her levels are low....She wants to start EEN as soon as tomorrow at least partially....My Fatherly instincts are telling me even tho her Docs and my Daughter don't agree is that the Humira has kicked in the past 5 days.I don't believe in my Heart she has become relatively pain free after 3 miserable weeks SOLELY from Prednisone....What do you guys think?....PS Im tired and need to go to bed but know that interacting with all of you has helped me feel better....Howard
 

cmack

Moderator
Staff member
I tried the liquid diet for while. When i had trouble, organic Amy's mushroom soup with just mainly cooked carrot and small pieces of cooked broccoli added. was good when put in the blender and heated up
like a puree but better. you can use dried onion or dried garlic to spice it up a notch
Wasn't the best but far from terrible. organic chicken broth would be OK too.

Always ask the Doc first is a good rule,

cmack
 

Tesscorm

Moderator
Staff member
There is a difference between a liquid diet and EEN. A liquid diet may help alleviate symptoms when dealing with a flare but is unlikely to provide all necessary nutrients/vitamins. Following EEN for 6-8 weeks, with a nutritional formula, will provide necessary nutrition, allows for bowel rest and helps mucosal healing.

My son was diagnosed just before turning 17. He did 6 weeks of EEN, using an NG tube, to induce remission. This worked for him. Without going into the full story but to give you 'background', my son then did supplemental/partial EN to maintain remission for two years. This kept him in clinical remission (no outward symptoms) but did not maintain biologic remission (ie without inflammation on the inside). Upon transfer to an adult GI, remicade was added. When diagnosed, he had inflammation in his small bowel, terminal ileum, some in large bowel and in duodenum - we were never given mild, moderate or severe classification. At diagnosis, he was also put on flagyl, thru IV for one week.

EEN (and possible flagyl ??) took away his symptoms immediately and took his inflammatory markers (CRP, ESR) down to normal levels. (They gradually rose as he reintroduced normal diet with partial EN as only treatment.) While on EEN, he was allowed clear fluids only - clear broth, jello, freezies, apple juice, etc. To accommodate school (and a teen's desire to not stand out), I sent him broth in a thermos so he could 'eat' lunch with friends and arranged for school to keep freezies on hand for him.

He learned to insert the NG very quickly and literally took him only seconds in the evening. He would insert it before bed, ingest the formula overnight and remove the tube in the morning. Elemental formulas are the most easily absorbed (allow greatest bowel rest) but taste the worst (not drinkable). My son used Tolerex.

If your daughter agrees to EEN, it would certainly give the humira a boost in getting her into remission.

I can't answer your question re pred as I have no experience with it. But, from what I've read here, pred can work quite quickly. I think it is possible that the pred has kicked in??? My son was diagnosed with fevers, diarrhea, nausea, night sweats, canker sores... all went away immediately, within days of EEN and flagyl... so, I'm thinking pred could have had the same impact?? But, I'm sure others with pred experience will jump in...

Good luck! I hope EEN, pred or humira will quickly begin to move her into remission.
 

Maya142

Moderator
Staff member
y Fatherly instincts are telling me even tho her Docs and my Daughter don't agree is that the Humira has kicked in the past 5 days.I don't believe in my Heart she has become relatively pain free after 3 miserable weeks SOLELY from Prednisone
Prednisone can kick in quite quickly. Some kids see a difference within a day or two. But it's possible that Humira is doing some of the work. It's going to be difficult to tell until she tapers off Prednisone, unfortunately.
 

cmack

Moderator
Staff member
Howard,

Hang in there bud,

I was luckily able to avoid many of these drugs by modifying my diet. Others are not so lucky. I realize that I am very blessed to be here and be able to say I'm no expert on a lot of these drugs and treatments.

If you need a vent, I'm here for you though. pm me or just talk to me on here if you need some moral support.

Wishing your family the best,


cmack
 
Top