What would you do?

[aheer9043]

That's what I asked our GI doctor, because we're in the "art" part of trying to keep our daughter in remission vs. the "science". No clear answers and an uncertain outcome.

Daughter was diagnosed at 7. Severe Crohn's throughout - small intestine, large intestine, colon - even slight indications in stomach and esophagus. Only place it didn't exist was the duodenum. She definitely got dealt a bad hand here.

We immediately put her on Remicade and she thankfully went into remission and there was no permanent damage that we could find. It felt like we could all breathe. Biologics come with risks but given how sick our daughter was, we ran to it and didn't think twice. Fast forward 3 years. She is 10 and complaining that her stomach hurts. We did a calprotectin test. 2200. Did another one - 2347. Her Remicade levels are good at an 8 and her antibody level is low.

Just had her scoped on Monday. Most areas pink and healthy except for a section of her large intestine (descending colon) which is inflamed and clearly flaring with Crohn's.

Doc says this it can happen where response to a biologic just stops, and we need to move on from Inflixamab. OK, let's do it...except he said once we move away, it's a "don't look back" situation.

After a discussion and some hand wringing, we are going with Entyvio per his answer to our "what would you do" question. The threads I've read here suggest it may not be as effective and it's only for the large intestine, right? I'm scared to pieces here that we are moving her from a drug that seems to have cleared the disease in several parts of her digestive tract to one that may cure her large intestine but make everything else a mess again.

Has anyone heard of someone doing well with Entyvio? Per our GI, other anti-TNF drugs are out because they follow the same pathways, and he wants to save Stelara for after Entyvio.

It feels like we're on a runaway train here. The scariest question of all is what do we do when our kid burns through these biologics? Has anyone here pushed through all of them? If you did, what did you do?

Before I end, thank you to the Crohn's veterans that have years of experience with this oh-so-fun diagnosis, and all of the newer contributors too that help keep this forum going and provide such great information and support. It has been a lifeline for me in the past three years and I am grateful to you all.

 

[my little penguin]

Why “save” Stelara ?
If entivyio is only going to fix the large intestine and leave the rest to simmer in inflammation that doesn’t help much either .
Stelara is good at the small intestine but not so much in the large intestine.
Abd vice versa for entivyio

there are new meds all the time
Mine was dx at 7
Now 20
Has been on remicade (8 months)
Then humira (all there was at the time by the way ) for 5 plus years
Then switched to Stelara (almost 7 years now)
So there can be good even if you switch .

 

[my little penguin]

I did want to add
Just because a drug is more effective in one area doesn’t mean for your child it won’t work in other areas
Stelara is not used much in juvenile arthritis because it’s not effective per some papers
That said at high dose high frequency plus mtx
It has been doing well for my kiddos arthritis as well as crohns
He takes 90 mg every 4 weeks
Arthritis standard dose is 45 mg every 12 weeks

just saying
You don’t know till they try the drug if it will work which is nerve racking
Will your child do een while waiting for entyvio to kick in ?
It takes many months (up to a year )
To be fully effective
And extra formula helps tremendously with growth in crohns kids
Mine did een then later supplemental (2-3 shakes a day ) since age 7( still at age 20 )
Still growing at 20 due to steriods at various times
But 6 feet tall so ….it works
Every specialist he sees is amazed he has had crohns since age 7 and grew despite it
I credit formula (peptamen jr /neocate it and now carnation breakfast essentials)

 

[aheer9043]

Thanks! Glad to hear that Stelara is 7 years and going strong! That kind of result on a biologic would at least get Caitlyn through primary school if we could achieve it.

Before the scoping, her doctor was predicting we'd move to Stelara based on her symptoms ( a stomach ache that was getting worse over time). Last week before scopes, diarrhea made its appearance and after the scopes he consulted with other colleagues and recommended Entyvio. I think perhaps he's thinking Entyvio will work better, and if not we jump to Stelara. Just got pathology back this morning - moderate inflammation in her stomach and her lower intestine (which explains the symptoms).

Is it possible for Remicade to partially work but not completely address the issue? This feels like such a huge decision since we can't apparently go back. Has anyone successfully left a biologic and restarted it later? We asked the doctor and I think his response was "typically people don't go back", but I don't know how to take that, and we're so overwhelmed to know we're getting back on this train that I didn't ask all of the questions or dig as deeply as I could have.

My biggest fear here is that she was so sick before we figured out she had Crohn's - very low quality of life. Remicade has been a complete blessing and gave her her life back and now there is a chance that by jumping we're making the situation worse. Of course, I guess it's also true that if we just stay the course, she could continue to get worse too. Her CP is high and looks like it's growing.

Does anyone on this forum take more than one biologic at the same time?

This unknown leap of faith, and this dang disease in general, is not for the faint of heart. My daughter and our family got to live the last three years in naive, happy "she has Crohn's, but it's managed" life, and now we're back into this hellish land of unknowns and what-ifs. I hate it here! I don't know how you do it, my little penguin. It sounds like you've had to switch a few times. You and others on here are so steady and frankly just pillars for the rest of us! I'm hoping these experiences get me to the same place you are down the road, with a functioning kid and much-needed perspective.

 

[Scipio]

Per our GI, other anti-TNF drugs are out because they follow the same pathways, and he wants to save Stelara for after Entyvio.

This is statement is contrary to what you hear prominent IBD docs say at the big medical conferences. When changing drugs is called for, they usually advise to change "within class" first - in this case change to another anti-TNF and only after more than one anti-TNF drug failures consider changing "out of class" - in this case to Entyvio or Stelara.

The reason why is that drugs can fail for reasons other than because blocking the TNF pathway is no longer working. It could be that antibodies to the Remicade are blocking it and very likely will not also block another anti-TNF such as Humira.

There are four anti-TNF drugs approved for Crohn's in the US. IMO you should not give up on the anti-TNFs so easily. You may wish to consider getting a second opinion from an IBD specialist.

 

[aheer9043]

Our doctor has never raised EEN, but I will talk with him about it next time we meet, especially with her stomach inflammation. I'm familiar with the lack of growth. Our daughter fell completely off of the BMI chart before her diagnosis and stopped growing for nearly 2 years. Ugh.

There is nothing else prescribed right now beyond stopping Infliximab, and moving to Entyvio (she already had her first infusion in the hospital this past Monday).

 

[aheer9043]

Thanks, Scipio. I think the doctor said her antibodies are low so this is one of those situations where the drug is just losing its effectiveness for a reason no one can explain. It's hard to recall - it's amazing how foggy your brain gets when you start to go into panic mode!

Our GI doctor is an IBD specialist, though I'm not sure why we're not talking about EEN and other options if Entyvio takes so long to take effect. We're going to be in trouble here if we go a year without anything working against her inflammation. Definitely going to ask about that!

 

[my little penguin]

You need a bridge therapy at the very least
Meaning either steriods or een until entyvio kicks in
It can take months
Definitely ask about samples
Prescription plans don’t cover een
Durable medical equipment clauses cover it as infusion therapy supplies
Some only cover of a tube is used
Ours permitted it to be covered with out

 

[my little penguin]

My kiddo is on two biologics plus mtx
He is in college living life
The second biologic is for a rare auto inflammatory condition (sweets syndrome )
So not two biologics for the same condition .

 

[Maya142]

Is it possible for Remicade to partially work but not completely address the issue? This feels like such a huge decision since we can't apparently go back. Has anyone successfully left a biologic and restarted it later? We asked the doctor and I think his response was "typically people don't go back", but I don't know how to take that, and we're so overwhelmed to know we're getting back on this train that I didn't ask all of the questions or dig as deeply as I could have.

My daughter has been on Humira and Remicade multiple times - by themselves, with MTX, at very high doses and with other biologics. She has severe inflammatory arthritis and Crohn's. Her Crohn's was treated aggressively when she was diagnosed (with Remicade) and thankfully isn't too bad, but her arthritis has been so hard to control that we have basically tried every biologic we can.

You asked what happens when you run out of options. We did that and we had to re-try biologics while waiting for new drugs to be approved, we have tried new biologics off-label (for example, something that is doing well in trials for her type of arthritis but is already approved for psoriasis) and also tried experimental doses (high dose Remicade for example - 20 mg/kg every 4 weeks). Finally, we had try two biologics at once, as well as MTX. Both biologics treat her severe inflammatory arthritis and one of the two also treats her Crohn's. But kids with severe IBD can be put on two biologics just for IBD. Surgery is also sometimes an option for kids who have a problem spot in IBD and often once that is removed, biologics work better.

It is true that some kids (and adults) are unable to go back to Remicade after being on it once - since it's made of murine (mouse protein) you're more likely to build antibodies and have an allergic reaction if you stop it for a while. But I know plenty of kids who have also stopped Remicade and successfully gone back on it, including both my daughters. Neither has had an allergic reaction. I will say that it didn't work as well the third time as the first, but it certainly did still help!!

You said your daughter's intestine looks good except her descending colon. Have you considered either adding MTX or adding topical treatment (i.e. proctofoam or hydrocortisone enemas) since it's her descending colon? I know it's not pleasant for a 10 year old, but it could help you hold on to a drug that is working well for her otherwise.

Also, sometimes kids flare and you can recapture response to a biologic by either doing a course of steroids or EEN. I know she has already started Entyvio, but one option was that she could possibly have tried a course of Uceris with Remicade and if that failed, then moved on to Entyvio.

EEN would obviously be better for her as bridge (vs. steroids) if she has fallen off growth charts. If she won't do EEN, I suggest you have your GI talk to her about supplemental EN. Because being underweight and malnourished can drive inflammation. My daughter tried to do supplemental EN by drinking Peptamen Jr. shakes but she couldn't drink enough to maintain her weight, much less gain. So she eventually switched to an NG tube she inserted nightly herself and pulled out in the morning (so no one at school had to know).

She was SO against the NG tube but she ended up finding it MUCH easier to deal with than the constant pressure to force herself to eat more or drink more shakes. And she felt SO much better once she was getting proper nutrition/enough calories! She couldn't believe how different she felt.

I hope your daughter is feeling better. Hang in there!

 

[Guerrero]

Entyvio is a good option, i’d trust your doc.

More biologic treatments are coming very soon. I’m sure you won’t run out of options.

 

[aheer9043]

My daughter has been on Humira and Remicade multiple times - by themselves, with MTX, at very high doses and with other biologics. She has severe inflammatory arthritis and Crohn's. Her Crohn's was treated aggressively when she was diagnosed (with Remicade) and thankfully isn't too bad, but her arthritis has been so hard to control that we have basically tried every biologic we can.

You asked what happens when you run out of options. We did that and we had to re-try biologics while waiting for new drugs to be approved, we have tried new biologics off-label (for example, something that is doing well in trials for her type of arthritis but is already approved for psoriasis) and also tried experimental doses (high dose Remicade for example - 20 mg/kg every 4 weeks). Finally, we had try two biologics at once, as well as MTX. Both biologics treat her severe inflammatory arthritis and one of the two also treats her Crohn's. But kids with severe IBD can be put on two biologics just for IBD. Surgery is also sometimes an option for kids who have a problem spot in IBD and often once that is removed, biologics work better.

It is true that some kids (and adults) are unable to go back to Remicade after being on it once - since it's made of murine (mouse protein) you're more likely to build antibodies and have an allergic reaction if you stop it for a while. But I know plenty of kids who have also stopped Remicade and successfully gone back on it, including both my daughters. Neither has had an allergic reaction. I will say that it didn't work as well the third time as the first, but it certainly did still help!!

You said your daughter's intestine looks good except her descending colon. Have you considered either adding MTX or adding topical treatment (i.e. proctofoam or hydrocortisone enemas) since it's her descending colon? I know it's not pleasant for a 10 year old, but it could help you hold on to a drug that is working well for her otherwise.

Also, sometimes kids flare and you can recapture response to a biologic by either doing a course of steroids or EEN. I know she has already started Entyvio, but one option was that she could possibly have tried a course of Uceris with Remicade and if that failed, then moved on to Entyvio.

EEN would obviously be better for her as bridge (vs. steroids) if she has fallen off growth charts. If she won't do EEN, I suggest you have your GI talk to her about supplemental EN. Because being underweight and malnourished can drive inflammation. My daughter tried to do supplemental EN by drinking Peptamen Jr. shakes but she couldn't drink enough to maintain her weight, much less gain. So she eventually switched to an NG tube she inserted nightly herself and pulled out in the morning (so no one at school had to know).

She was SO against the NG tube but she ended up finding it MUCH easier to deal with than the constant pressure to force herself to eat more or drink more shakes. And she felt SO much better once she was getting proper nutrition/enough calories! She couldn't believe how different she felt.

I hope your daughter is feeling better. Hang in there!

Thank you for your post, Maya142. This gives me a lot of hope. I brought up MTX, but the doctor was reluctant to go that path and stated that because of her age (she's 10 now) it wasn't really on the table yet. So we're going with Entyvio alone and hoping for the best, along with a different pill medication to help with her stomach since Entyvio likely won't help there (can't remember what it is at the moment, but she will start it this week). We opted to leave steroids on the shelf for now but if Entyvio doesn't kick in soon, we'll definitely be revisiting it. So hard to know what to do! I'm sure this gets easier with time and going through additional flares - knowing you're ahead of me on this path and have had success with retries and MTX, etc. tells me our daughter has more options than we thought. Because Remicade didn't control everything, we were sort of left with the impression that we had Entyvio and then Stelara if this doesn't work, but nothing really past this point. Knowing that's not the case may allow me to sleep a little better at night!

Based on these discussions, I'm also keeping Humira in the mix given what Scipio said, plus your experience. Our doctor said it's not really an option since it's based on a similar mechanism to Remicade. I really like our doctor, but it feels like he is perhaps closed off to possible treatments that do appear to work for others. I trust him, but if we get to that point where we're not really sure where to go, I'm going to be digging deep into these other options. Thanks all - these insights are so comforting!

 

[my little penguin]

Get a second opinion quickly
Mtx is used in juvenile arthritis as young as 2 or 4 years old
Same with humira for juvenile arthritis at 4.
Entyvio takes a long time to work
6-12 months not weeks .
Chop , Boston childrens and Cincinnati childrens all do second opinions and record reviews
Good GI recommend second opinions and welcome them

 

[cheka]

op -- please go to the research section and read up on gut dysbiosis and leaky gut. also use pubmed, it's a goldmine

example google search -- pubmed crohns dysbiosis. also do one for leaky gut and one for intestinal permeability. when you click/read an article at pubmed, scroll down beneath the article. there pubmed shows links to other similar papers. study this stuff for a month and come away amazed.

also, if you come across a summary -- the full paper is linked in the top right corner

and you want to bias your learning towards the newest research, this is an emerging science and most of the best info is very recent

 

[my little penguin]

@cheka
Children are not the same as adults
They need medicine not diet changes
Their disease is very different
They are growing machines plus hormones .
The immune system of a child or GI disease of a child is not the same as adults studied
The stakes are much higher .
Only scientifically proven methods for children should be used .
Your studies are new and only in adult populations.

 

[Scipio]

@cheka
The stakes are much higher .
Only scientifically proven methods for children should be used .

I agree. During a child's one and only chance to grow and mature is not the time to be experimenting with "emerging" treatments and unproven cure-alls.

 

[Maya142]

Get a second opinion quickly
Mtx is used in juvenile arthritis as young as 2 or 4 years old
Same with humira for juvenile arthritis at 4.

Honestly, I agree - a second opinion is always a good idea! MTX can be used very young - in juvenile arthritis, it has been used for decades and is used for toddlers quite often.

Because Remicade didn't control everything, we were sort of left with the impression that we had Entyvio and then Stelara if this doesn't work, but nothing really past this point. Knowing that's not the case may allow me to sleep a little better at night!

You have other options - please don't worry yet. There are new drugs being approved all the time. You have Entyvio, Stelara, Humira, Skyrizi and possibly by the time she needs it, JAK inhibitors like Rinvoq or Xeljanz. There are also other anti-TNFs used for IBD, like Cimzia and Simponi, although less often. And you can re-try Remicade if necessary.

I am concerned about her weight and growth. What is her GI doing if she has fallen off the growth charts? Has your GI suggested seeing a dietician or doing supplemental EN using formula like Pediasure, Peptamen Jr. etc? The window for growth is small, so it's important to make sure she's getting nutrition that she can absorb. Seeing an endocrinologist to determine her bone age might help - if it's delayed (for example if her bone age is 8), then you have some time. But if it isn't, then you want her to catch up ASAP. I know she's only 10 but girls have their growth spurts around 10-13 often. So you don't want to miss the window for growth.

With supplemental EN, she would still eat most of her calories, but she would get some percentage from formula which is easily absorbed even by inflamed intestines and can help promote growth and weight gain.

 

[cheka]

I agree. During a child's one and only chance to grow and mature is not the time to be experimenting with "emerging" treatments and unproven cure-alls.

the drugs are the riskier options. my option is safer by a mile

 

[my little penguin]

Until your option has been proven to be effective by scientific studies in children - it can not be stated to be “safer”
Untreated or undertreated crohns in children is not an option.

 

[cheka]

all of the current treatments are abject failures. this realization is what drove me to find the treatments that make autoimmunes disappear. i flat out rejected the medical group think. it took me a year, but i figured it out -- with a TON of trial and error. my kitchen is still overrun with all of the stuff i bought/tried during that phase

how many here have made their autoimmune disappear using pharma pills? and the side effects with those are no joke. the worst of both worlds - doesnt fix the problem and comes with ugly toxicity.

the body sees those pharma pills as poison. it has to summon the poison control center to break them down and get them out of the body. this costs a lot of nutrition. critical to be on a good supplement plan if taking pharma. have to replace the nutrients being consumed by the high usage of the poison control system. failure to do so leads to nutritional shortages and more health issues

i advocate for one to stay on their pharma while fixing their dysbiosis and their leaky gut. after a few months of doing both - and seeing some improvement in the digestive system symptoms, start tapering off of the pharma chemcial(s), sloooowly.

 

[my little penguin]

Your missing the point
Adults can do what they want
You can’t ignore medical advice for children
And children need proven therapies that work .
Not experimental stuff from your kitchen

 

[cheka]

disagree. but that's okay. it's best for the suffering to hear all opinions. i'm not sold on the children are different meme. i'll do some research and prove/disprove that theory.

 

[Delta_hippo]

So sorry to hear your little girl is suffering. I just wanted to add maybe worth thinking about high calorie smoothies or soups while the dr considers EN. When you are flaring often appetite goes and you want something she can easily absorb. Blending in full fat coconut milk or nut butter can add calories while not making the taste awful. I agree with the comments above about importance of her being close to hitting puberty and growth spurt and not wanting her to miss that window.
It may be worth just monitoring calorie intake for a few days, I was really surprised how little I was eating when I thought I was eating normally and I had to have two snacks plus three meals to actually get enough calories to try and regain weight.
Hopefully she will respond to Entyvio and you will be back in “crohn’s but coping “ phase before you know it.
I have been on stelara for a while, my GI did say that if it works it is more likely to keep working than some of the anti-tnfs.
If your dr likes the idea of an EEN trial but your daughter doesn’t, I remember reading a paper that found using part CDED diet part EN shakes was an option, I’ll try and find it. I also recall from other threads on here there are different versions of EEN shakes that vary in unpleasantness from gross to drinkable with a straw if chilled. So if you are going that direction you might get some good advice on here about brands to try etc.
Good luck with it all