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Calprotectin 926, Sed Rate increased

Hi -
My 10yr old son has been on Humira for 2 years now and has done really well. In the last month, his bowel movements have increased from 1-2 times daily to 3-5 times daily, and has been having stomach pain "that feels like Crohns". His dr is on maternity leave, but the dr taking over decided to repeat labs, get a Humira level, and calprotectin. His Sed Rate is 38, but even at his worst, it was only 30. His Calprotectin level scares me - 926. He also has had some blood in his stool. I'm still waiting on the Humira level, and for someone to get back to me.
Just curious what everyone's thoughts are - will they want repeat scopes?; is prednisone used in this case?; will they up the Humira dosing? I know a lot of this probably depends on the Humira level, but just wondering what other's experiences have been.
Thanks!
 

Maya142

Moderator
Staff member
Sorry to hear your kiddo is flaring :(! I would guess that if the Humira level is low, they will increase the dose from biweekly to weekly. If they're normal and he has antibodies, then they may consider switching him to something else.

Your doctor may also consider adding Methotrexate - it can increase trough levels of the drug and help prevent antibodies from forming.

In terms of Prednisone, the answer is maybe. It really depends on the patient. In his case, I think it would act as a bridge until Humira at the higher dose kicks in. But since he doesn't have terrible symptoms, then perhaps he can hang on until Humira kicks in and can avoid steroids.

But then on the other hand, considering he has a very high FCP and a high ESR and clear symptoms of Crohn's, another possibility would be to use a steroid, usually at a pretty high dose (usually 40 mg of Pred) induce remission. Then weekly Humira would maintain it.
 
His Dr is on maternity leave, so another dr called me back. She didn't have the Humira level yet, which will dictate how we proceed. She said she is going to review his file, but since it's been 2.5 years since scopes/MRE, we may need to repeat that. While I don't want to put him thru it, I think it may be a good idea. Or do you think it's reasonable to increase Humira (depending) and possible do some steroids to see if things improve before we repeat scopes/MRE? He also takes Azathioprine 75mg daily.
 

my little penguin

Moderator
Staff member
I would assume scopes MRE first
So they know where he is at now
Then probably increase humira or switch meds with pred as a bridge
Given he is on humira plus aza they might just switch meds
But definitely can’t add mtx

Ds had to stop humira almost two years ago
It’s stopped working (for his arthritis - crohns was ok)
Switched to Stelara which required steroids as a bridge for about 6 months

Good luck
Hope things calm down soon

Remember that een can be used as a bridge as well instead of steroids
Ds has done this a few times
 

Maya142

Moderator
Staff member
I would agree - scopes/MRE are a good idea if it's been 2 years or more. That will give a better idea of what is going on - where the disease is, how bad it is.

And yes, MTX + Aza would be too much for his liver probably, but you could swap Aza for MTX. MTX is now considered safer, particularly in boys.
 
Sorry to hear about the flare. My daughter has had several flares over the past four years and almost every time her Remicade levels were low (and once she had detectable Remicade antibodies as well). Each time, her doctor upped her Remicade dose and the flare ended. She didn't get a scope or MRE any of those times.

This past year, she flared again but turned out to have fairly high Remicade levels. Despite her high levels, her doctor upped her Remicade dose once again, and the flare ended. However, as it had been more than 3 years since her last MRE and scopes, she went ahead and ordered both just to make sure there wasn't any lingering inflammation. They were both clear, so we're still hanging in there with Remicade.

So that's a long way of saying that you may just need a Humira dose increase. Hang in there while you wait for levels, and I hope that your son responds quickly to whatever treatment change you try!
 
I know it isn't popular with us parents on the forum but my girls have had two GI's and in a situation such as this they would test levels and respond accordingly and wouldn't scope. Both docs would say, "no need to scope, I know there is inflammation and it won't change my plan of action". So I think it would be totally reasonable to ask the GI if scoping will change the plan of action. If so, then I would go ahead and scope. If not, I might be inclined to go ahead and make any changes and scope later to make sure they are working.

Your son's situation is why most GI's don't like to go longer than 2 years between scopes. Regular surveillance scopes will catch simmering inflammation that hasn't yet caused symptoms or raised labs to alarming levels. Although there is no guarantee that you would have caught this anyway so don't start kicking yourself.

As for what we have done in the past, we have bobbed and weaved with Remicade levels and a few times when levels seemed sufficient we have done a course of prednisone or budesonide to get her healed to the point where the Remicade could take over.

Good luck and keep us posted.
 

my little penguin

Moderator
Staff member
Honestly scoping/imaging is not just to “change “ the treatment plan
Scoping/imaging is required to know the extent of the inflammation
Has the disease spread , has the type of disease changed
Kids go from inflammation to stricturing fisstulas etc much more so than adults and it changes over 10 years - they know this
To document where he is at now inflammation wise so if you make changes like increase humira
Then you know whether those changes - made thing better , worse or kept the level of inflammation the same
Knowing there is inflammation is a no brainer
Knowing the extent of inflammation and type of disease /spread is impossible with just blood/stool
Lastly crohns kids are at high risk for colon cancer
The longer they have the disease
Inflammation causes cellular changes
Cellular changes can result in cancer
After 8 -10 years regardless of symptoms of crohns
It is recommended to have yearly scopes just to have surveillance for cancer

So yes scopes AND imaging are extremely important part of managing this disease
 
That is my main worry to see if there is stricturing/fistulas/cancer - and those things you can really only view on scopes, correct? He had life-threatening reaction to Remicade on 4th infusion despite all the pre-meds, and ended up with very high antibodies. If they determine the Humira isn't working, what else is there for his age? I know nothing that is approved. I'm seeing that possibly Cimzia or Entyvio may be options?
 

my little penguin

Moderator
Staff member
Stelera is also an option for crohns
Ds started that almost two years ago at age 13
Entyvio is more successful in UC per our kiddie Gi
And prefers Stelara for his crohns patients
 
His Humira level is normal at 12.6. He may just need a more frequent dose, as some of you suspected. But they want to reassess the disease activity and progression before we make any moves. I hate to put him thru it, but I think it's a good idea. I'll keep you guys posted. I appreciate the posts!
 

my little penguin

Moderator
Staff member
Just an FYI dosing for humira can be
40 mg every 2 weeks
40 mg every 10 days
40 mg every 7 days
And highest dose 40 mg every 5 days
Ds was on all of these at various times over 5 years
Good luck woth the scopes imaging
 

Maya142

Moderator
Staff member
In his case, I agree that scoping makes sense. Like MLP said, his disease could have spread. It could have become worse.

I don't mean to scare you, but I remember one story on the forum years ago - GI kept saying there was no need to scope. Kiddo had continued symptoms which were called IBS. GI finally agreed to sigmoidoscopy which was clean. Kiddo continued to have bad symptoms for months before Mom and Dad pushed for a full colonoscopy. After the scope, the GI came out to tell them their little girl's terminal ileum was one giant ulcer and had to be removed ASAP.

Now this was years ago, probably before Fecal Calprotectin was used frequently. So yes, now we do have a good way to monitor inflammation without scoping. But I still think scopes are very necessary in children to see if the disease has spread or progressed. And like you said - fistulas and strictures often can't be seen without imaging - an MRE usually. And those may change the treatment, so imaging is important.

Of course, if you've scoped a kid 6 months ago and if after increasing their dose, they were still flaring, then I'd understand switching to a new drug without scoping/imaging.

But if last scopes were years ago, I'd want scopes/MRE done first.
 
Update: MRE showed active inflammation of terminal ileum, cecum and appendix.
The scopes showed congested, erythematous, friable, ulcerated mucosa in the recto-sigmoid colon, cecum, ileocecal valve, and terminal ileum. Patchy moderately erythematous mucosa in gastric fundus and gastric body.
So basically, he's out of remission and things are quite similar, if not a little worse than the last scopes. It appears Humira isn't doing the job. They want to wait for the biopsies to see whether they will increase Humira to weekly, while adding on steroids, or changing meds altogether. They mentioned Stelara or Cimzia. They said the Entyvio is more colonic and for UC, like one of you mentioned. Oh - but no strictures or fistulas, so that's great news. So, we'll see. Keep you posted!
 

my little penguin

Moderator
Staff member
When Ds failed humira after 5 years the docs went with stelara over Cimzia
In Ds case they said his body had been flooded with anti tnf for 6 years
They thought a different agent would be better
Hope they get a good plan for your kiddo
Be prepared stelara is only approved for 18 and up

Less than 12 years old is harder to get approval
We had a long battle with insurance
At age 13
Stelara also took a very long time 8 months and Ds needed high dose every 4 weeks
 
Sorry to hear about the results, but at least you can move forward with changes now. How is your son feeling?
 

Maya142

Moderator
Staff member
Oh no! Poor kiddo. Definitely sounds like he needs a new med.

My daughter is currently on Cimzia. She has Crohn's in her colon, including her rectum and also in her terminal ileum. It's always been worst in her terminal ileum, but it is still mild Crohn's overall. Scopes usually show some ulcers and inflammation but nothing terrible.

She has done very well on Cimzia. No side effects except a mild injection site reaction, which went away after several doses. She gets 2 shots (each is 200 mg) every month - so a total of 400 mg evert 4 weeks.

It can also be given as 1 shot (200 mg) every 2 weeks, but once a month is more convenient for us.

The shot does not burn like the old Humira did but it does sting when injected. It's very, very thick and we've found that injecting very slowly minimizes the pain. M has been on it roughly 2 years (with a break in between for 6 months, because of insurance issues) and it has worked very well for her. Her last Fecal Calprotectin was 19 - an all time low for her!

M had been on 4 anti-TNFs when she started Cimzia. (Humira, Enbrel, Remicade, Simponi). Anti-TNFs do not work for her arthritis, which is severe, but do work for her Crohn's, so her GI felt it was worth a try. So far, we've been very happy with Cimzia.
 
The dr called, and said that the biopsies were pretty consistent with their scope findings. Sounds like his terminal ileum, and cecum are the worst with ulcers/inflammation. His rectum/sigmoid colon isn't great either. They want to up the Humira to once weekly and see how that goes. They said it works rather quickly. They said they are trying to get away from using steroids, as they mask the symptoms, while the inflammation is still present. They did say that if the pain/diarrhea/bleeding continue, we can try Entocort since it works topically in the intestines. We are going to run labe the week of June 10th and see them on June 20th to discuss if this seems to be working. His trend in Humira levels has gone down each time, even though it's considered a theraputic level, so they think he may be a kid that just needs more. Fingers crossed. If not, then we'll be discussing Stelara or Cimzia. I can't say enough how I appreciate all of your responses.
 
I just posted on someone else's thread that a lot of kids need much higher levels of the drug to get to remission. Remicade says a level of 4-7 is sufficient yet O needed to be at a level of 12.

Sounds like a good plan. I hope it works!
 

Maya142

Moderator
Staff member
Glad there's a plan! I hope the switch to weekly Humira makes a difference. Is he still on the Azathioprine?

They can also test Azathioprine levels - they test for a metabolite, 6 TGN which should be between therapeutic levels. My daughter had very low levels so to "optimize" treatment, we tried increasing the dose. It did help her Crohn's to get her to therapeutic levels but then she got too many infections so we discontinued Imuran.

Switching to MTX is another option - I'm actually kind of surprised they are using Imuran because at our children's hospital, they don't like giving it to kids unless they have failed MTX, particularly for adolescent boys. Your son isn't quite there yet but wanted to mention it.
 
Hi Everyone -
It's been about 6 weeks of doing Humira 40 every 7 days. He has good days and bad days with stomach pain, diarrhea, and bleeding. We did labs, and his calprotectin went up from 926 to >1250. Not good, right? His sed rate went down from 38 to 19 though. Our appointment is tomorrow, and I don't know what they will suggest. Not sure if it's time to move on from Humira or not. Ugh!!
 
Not great but not horrible. There could be hundreds of points swing in cal pro from one day to the next. Especially at the upper ranges...upper ranges can swing 300 points from day to day. So at the very least it hasn't budged and yes, potentially increased. It is rather curious that the sed rate went down that much though. But sed rate is slow to react so who knows what it really is and if your son is like so many here he could have a perfectly normal sed rate and still be inflamed. One of my girls never shows inflammation in her blood labs. It's all about the poop!

Have they run another levels test to see where he is at now? How many years has he been on Humira? Sometimes they just lose response to a med and have to move on.

How is he feeling?

Good luck at the appointment! Keep us posted.
 
They didn't order another Humira level. I'll suggest that tomorrow at our appointment. It's been 2 years 3 months on Humira. He's ok overall, but he says it feels like razor blades when he poops, and there is a lot of blood when he wipes. Should he be on rectal enemas or suppositories?
His sed rate has never been higher than the 38. He's always corresponded pretty well with calprotectin levels based on his symptoms/scopes. I tend to think it's really increased. So that in and of itself should be a reason to move on, do you think?
 
Yeah, I would add suppositories or a steroid cream (not an enema, that will shoot right past the problem area) to see if you could get those anal issues more comfortable for him. Sounds like some pretty bad fissures. O uses the suppositories for rectal inflammation but I understand from the parents here that they can be hard to use with fissures. For the first time ever they gave O a cream with a tiny little screw on applicator. You insert the applicator and then squeeze the cream in. The applicator is just way too short to reach where O's inflammation is but I am thinking it might get to fissures and be A LOT more comfortable than suppositories. Worth trying at least just to make him comfortable.

Yeah, you know I am a cal pro fan. I am thinking he is just losing response to Humira BUT before I abandon a med I would want ALL the necessary information and the only piece you are missing right now is his level. It would totally stink to leave a med and then find out that he just didn't have enough and then not be able to go back because of antibodies. True there are a lot more meds on the market now but they don't have the success rate that Remicade and Humira have. Add to this the fact that your best shot at responding to a biologic is your first one, I would want to make sure I optimized that therapy as much as possible before moving on (but don't wait too long like our GI did). Oh wait! Just went up and re read your post. You are giving it to him every 7days...hmpf. IDK a lot about dosing Humira. Is 40 the kiddie dose or adult? I know quite a few kids on here needed the adult dose.

Ask the GI about adding something to help get that inflammation down now so that way maybe Humira will be able to maintain. Maybe add the Entocort (although my girls have no luck with Entocort). EEN? Steroids?

Good luck. I think you will have a lot more answers tomorrow. In the meanwhile at least ask for a rectal/anal topical to make him more comfortable.
 

my little penguin

Moderator
Staff member
Humira can be given up to every 5 days at 40 mg
But only if his levels are low
With that fecal cal ....
May want to look elsewhere
Ds switched from humira to Stelara
But needed Stelara every 4 weeks
Hard to get insurance to approve but doable
Easier once they turn 12 though

Creams aren’t going to fix the issue
Needs a systemic med to keep that level down
Please talk to your doc about switching
Cchmc has a trial woth Cimzia for pediatric. Use
There is also simponi (but most like that for UC not crohns )
 
Yeah, 40 every other week is an adult dose, but they upped it to weekly about 6 weeks ago after the scopes. His last Humira level before we upped it, was 12, so should've been a therapeutic level and working as it was. Thinking he's losing response. But maybe to just try to optimize it we'll try Entocort, rectal topical and draw a Humira level to see before switching? Do you guys think that staying with a TNF alpha is the way to go, or just trying Stelara?
 
Yeah...here is where you enter Medicine is an art not a science land. It is hard to know if this is a flare or losing response. If a flare, treat it and hope that then the maintenance med can well...maintain. Entocort or steroids or EEN could treat the flare. Years ago, before we had all these other med choices, ped GI's would treat the flares with steroids and then go back to maintenance mode. Sometimes it worked, sometimes the "flare" was actually a loss of response. Since all the new meds have been introduced it seems we assume loss of response a lot faster and move on. Clearly not our GI because we hobbled along for three years before he called it and you definitely don't want that! There is a balance somewhere, you just have to find it.

Oh and I didn't mean that the cream would fix all his issues BUT it will treat those pesky fissures and make him a lot more comfortable while they figure this thing out. Big fan of topical therapy here!
 

my little penguin

Moderator
Staff member
It depends
We went up to every 5 days from every 7
But he was fine at every 7 for a year
And then every 5 for a year and half

We were told at that point he had been on anti tnf for 6 years so they thought his body would respond better to Stelara
Stelara takes a long time to work abd was the only time they saw evidence of mild crohns again on his scopes was after 6 months of Stelara at every 8 weeks
Prior to that no evidence for 6 plus years of scoping yearly

On humira abd remicade
His joints got worse for his arthritis
But so far not bad enough to pull Stelara
Crohns at every 4 weeks is stable no inflammation on fecal cal

We were told at this point
Meds are just a gamble
They don’t know what will or won’t work after humira abd remicade
🤦‍♀️
 
If he is losing response, it is likely because his body up regulated other mechanisms of inflammation (not tumor necrosis factor) so IMHO and that of the GI's I follow, you would be better off changing to another mechanism of action. So Stelara or Entyvio would usually be up next. Stelara has a better Crohn's success rate but not so much in the colon. Entyvio has a good success rate in colon (37 %) but not so much from Crohn's. Pretty much what MLP said. Until they have a way of figuring out what mechanism is driving your disease, they won't know which drug to try next.
 

my little penguin

Moderator
Staff member
For ds it didn’t matters since he wasnt responding
If he isn’t getting better immediately after the shot 24-48 hours
Then we knew it wasn’t doing anything
So going up in frequency wouldn’t help Ds
If he was ok for 4-5 days then got worse then we knew he needed a more frequent dose
If that makes sense
 
I would get it if for no other reason than piece of mind. If levels are off the chart high then you know you are making the right choice. I always try to avoid the "what if" questions that will make me crazy later on. I am still what if'ing dropping Remicade...like what if we just added a topical for rectal inflammation...what if we just added mtx or a round of EEN...and so on.
 

Maya142

Moderator
Staff member
He's ok overall, but he says it feels like razor blades when he poops, and there is a lot of blood when he wipes. Should he be on rectal enemas or suppositories?
Poor kiddo!! My daughter has fissures and she described it as "pooping glass" - it really hurts! She was put on hydrocortisone suppositories and while she hated them (they were very painful for her to insert), they worked like magic. We had already tried a topical cream but that did not work for her. The suppositories really did though.

At his appt. make sure to tell his GI about the rectal pain with pooping. Will he let you or the GI look at his bottom? Often you can see fissures on the outside. They also may want to do a rectal exam, so you might want to prepare him for that.

As for Humira, it can be given more often, but like the others said, if it's a dosing issue, typically you see a response that wanes as you get closer to the shot. For example, we gave up on Humira when it was lasting 3 days and M was taking it every 6 days. So she'd only have 3 good-ish days for every dosing cycle.

As for switching to another kind of biologic, we did not for my daughter's arthritis (her IBD responded well to anti-TNFs but her arthritis did not). So we tried 4 different anti-TNFs. She did great on Humira until she lost response, and did well on Remicade for a while. But trying other anti-TNFs after that was sort of pointless because she had just lost response to all anti-TNFs for her arthritis. We really needed to switch to a biologic that worked differently and once one was available, we switched to that and she did MUCH better on it.

That said, I have heard mixed things about Stelara and Entyvio, so it's hard to know what it is the best choice. It's really just trial and error - like mentioned above, you could use Cimzia or Simponi, which are anti-TNFs or Stelara (IL-23 and IL-12 inhibitor) or Entyvio which is gut specific.
 
So, the dr asked Ian if he's felt better, the same, or worse over the last 6 weeks that we've done Humira every week. He said, "a little worse". Dr was slightly encouraged that the SED rate went down a little, but I told her he's mainly correlated with the calprotectin level. Even when he was throwing up 3 months straight, his sed rate was only 30. I don't know why they didn't do the Humira level with the rest of the labs, so we had it drawn there, along with Iron tests, and she wanted to test for C diff. Luckily Ian had to poop while we were there, so that was convenient. I'm sure he doesn't have cdiff though.
So, when he first started Humira over 2 years ago, he was on 40mg every week. His level was in 30's. Eventually they went to every other week, and over the years, his level has gradually come down, but should still have been therapeutic.. His level in March when he was flaring was 12. So this is the plan - 1) If Humira is in the 30's again and he's still having these symptoms, it's clearly not working for him and we need to change. 2) If level is <12, they want to increase to 80 weekly - this is 4x normal adult dose! 3) if btwn 12 and 30's they still want to increase and see how he does. Because it worked for 2 years, they really don't want to give up on it just yet. Maybe he just needs to be in the 30's for it to work for him. So now we wait. If we change, there's Cimzia which works the same way as Remicade and Humira, so likely that won't work either. Or there's Stelara which works differently, but then there's nowhere to go from there. So, that's the plan. She also had to check his butt, and she thinks there's "skin breakdown" and possible fissure from the inflammation and just going more, which is causing the bleeding, so she wants us to use diaper cream for now. She said no to the hydrocortisone cr/suppositories for now. She also said no to Entocort right now too, unless he gets significantly sicker, since we won't know if it's that or the increased Humira (if that's what we do again) that is helping.
But, isn't 80 every week way too much??
 
Makes total sense to just change one thing at a time.

80 every week is not too much if that is what your child needs. I have read studies that say the risk is independent of dosing so that shouldn't be a worry. A lot of time we worry that needing more med means our kids have more severe disease but honestly it could just be his metabolism burning through the drug faster. Sometimes it could mean that you are in a bit of a flare because inflammation sops up the dog faster causing lower levels. So you up the dose until they get to a good solid remission and then you can slowly try to back down to find the super sweet spot.

Honestly, kids have super high metabolisms and more aggressive disease so it should really be the adults getting nervous when they are put on kiddies doses;)

I really hope the bump up in Humira makes a difference. 12 vs 30 when he was doing well is a BIG difference and that could be the answer. Fingers crossed.
 

my little penguin

Moderator
Staff member
80 mg a week is actually 40 mg every 5 days
And no it’s not too much
Ds was on 40 mg every 5 days (80 mg a week)
For over a year
The way the Rheumo put it
If you needed 40 mg at 70 lbs
That is so x mg/kg
And now the kiddo weighs 100 lbs of course you increase frequency to get back to x kg/mg
Since humira only comes in one dose
Remicade they increase the amount a kid gets all the time since it’s based on weight
Adults are done growing so no weight gain

The only issue is if he isn’t getting relief right after the shot and it’s wearing off
In our experience increasing frequency doesn’t really help
Good luck 👍🏻🍀
 
I'm so glad to have your perspectives. The 80mg every week just sounded crazy to me. This last time we did the shot on Thursday, he still had 4-5 stools, some of them diarrhea, and bleeding the day after. So you are saying that he should be better the day after the shot? Does it really work that fast? I just got a notification from the portal that his test result was in, and his Humira level is 21. I'm guessing they will want to increase it then and see. When do you think it would be appropriate to do another level to check? Thank you all so much for your replies - it really helps!
 
Sounds like an increase is in order to me. My girls didn't use Humira. These drugs are good but they aren't miracle workers. I would give it at least two shots to do it's thing as far as symptoms go. Fingers crossed those levels come up and that is all that was needed!
 
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Maya142

Moderator
Staff member
80 mg a week is actually 40 mg every 5 days
And no it’s not too much
Ds was on 40 mg every 5 days (80 mg a week)
For over a year
The way the Rheumo put it
MLP wasn't your son on Humira every 5 days? That's 6 40 mg shots per month.
80 mg per week means 8 40 mg shots per month. So close, but not the same.


But I have heard of kids with severe IBD and severe arthritis on 80 mg per week. My daughter was on 20 mg/kg of Remicade every 4 weeks - many times the "normal" dose of 5 mg/kg every 8 weeks for quite a while - no issues.
 
His Humira level came back at 21. Now his regular dr is back from maternity leave, and she called me last week. She wants him to stay on 40mg weekly for another month, and then repeat all the labs. She thinks it may just need more time for the healing. So we are holding steady. She may be right - he's been better the last few days. She doesn't really want to do the 80 weekly. And if the labs/symptoms indicate no change, she doesn't think Cimzia will work either. She wants to go straight to Stelara. So, fingers crossed for the Humira just needing more time. I"ll keep you posted!
 

Maya142

Moderator
Staff member
He's failed Remicade and Humira right? So then switching to a different class of biologic may be what he needs.

My kiddo has severe arthritis. She tried 4 anti-TNFs for her arthritis, though only the 1st one worked well. The second one worked, but not as well. It was downhill from there but there were only anti-TNFs out at that point, for her type of arthritis. When a different class of biologics was approved for her arthritis, we switched and it was the best decision we ever made.

I hope he just needs more time, but if not, you have a good option.
 
HI Nelsonshan hope he is doing better. My little girl Lucy is 10 also and we had the same issues with Humira and they switched to stelara which hasn't really worked yet and we have now re introduced Humira. Humira is good for peri anal disease. Big hugs and hope he is feeling better soon.
Polly xx
 
Hi -
Thanks for asking. He has been doing better the last couple weeks. We're still doing the weekly Humira. We do bloodwork this week, so we'll see where he's at with everything. The diarrhea/stomach pain seems to have decreased though. Fingers crossed we just needed a little more time.
Hope everyone else's kiddos are doing well!
 
I don't have his Humira level back, but his calprotectin went from 1250 down to 350, but his sed rate went from 19 to 41. Thoughts?
 
That is weird. I would take consolation in the fact that cal pro is gut specific and sed rate isn't.

I know he has been dealing with ongoing inflammation so not the same thing but my girls from time to time will have a sed rate spike into the 40's and then next infusion it comes back down.
 

my little penguin

Moderator
Staff member
Did he have a cold ??? Or any other infection?
Sed rate is up to 2 weeks behind
So anything in the last two weeks
Fecal cal is up to 6 weeks behind
We were told any cold or illness within 6 weeks of fecal cal can increase it so not to turn in a sample at all if Ds had been sick

Remember each is a marker
So if fecal cal is up then probably gut inflammation
If sed rate is up probably gut inflammation (unless infection)
Fecal cal at 350 is still High and depending on when you took the sample fecal cal can vary from day to day and throughout the day
So my guess (mommy opinion only ) still flaring based on a High value of fecal cal and High sed rate

If fecal cal was normal (50 or below ) then that’s a different scenario
But 350 is still high
 
No infection or cold. In the past, the Dr had said there was no difference to them whether calprotectin was 926 or 1250, it was still too high. I was happy to see it go down to 350, but I know this is still too high. But to me that has to mean improvement! I was disappointed to see Sed Rate go up though. Ugh. Our appt is the 19th. I wonder if they'll want to keep giving the weekly Humira a chance, or change meds.
 

my little penguin

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I hear ya
Absolutely hated switching from remicade to humira
And then from humira to Stelara
Humira to Stelara was difficult since they kept him on low dose steriods (10 mg ) which wasn’t really enough to do much
It was a tough couple of months
Not something I want to ever repeat

That said now that he is past the tough part
It was worth it
They increased Stelara to every 4 weeks and for the first time in years no active arthritis found and fecal cal less than 15 multiple times

So while humira did good
Stelara so far has done better
 
Remind me...he has small bowel inflammation mostly? He must if they are considering Stelara. Personally I think the dramatic drop is encouraging. Yes, 350 is still elevated, especially in small bowel disease but to go from 1250 to 350 is significant. I think I would want to see what the next cal pro is before making any sort of switch. It is true cal pro can vary pretty widely so that 350 could potentially also be<100...I just would want more data and to see more of a trend.

The thing is, your best shot at response to a med is with your first biologic. Once you have tried one and move to the next the chances you respond go down. So I wouldn't take the switch too lightly and make sure you have exhausted Humira all the while keeping an eye out to make sure you are not letting a full fledged flare take hold.
 
I agree with crohnsinct on this one but it appears that the GI is sticking with Humira a little longer to see if the higher dose will make the difference. I guess a little more time and a few more tests will determine if a change is needed, but if he's feeling better and the cal pro went down, maybe it is working. Fingers crossed.
 

my little penguin

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See I disagree
Maybe because Ds has changed biologics
Remicade was on 8 months - allergic reactionx2
Switch to humira (second biologic )
Was on that one well over 5 years only when we stopped it for 2 plus months (due to non crohns surgery ) did it fail
Stelara has been on for 2 years now (third biologic )
So in his case it was not hold on to the first biologic even if it’s not working since it’s the first or even the second
It’s you need a medicine that works
Otherwise it’s all risk no benefit while damage is being done
Limping along out of fear of changing is not a good place to be disease wise at all

(Off my soap box now )
 
Lol. I wasn't saying hold on even if it isn't working but rather don't abandon too soon based on one lab result.

I think you will have a better idea once you see GI on the 19Th.

Good Luck!
 
Right now his disease is mainly in the terminal ileum, cecum, ascending, and rectosigmoid colon. Yesterday he had "liquid diarrhea" 5 times. This will happen after several good days (only 2 or 3 non-diarrhea bm's daily). He first failed Remicade, and we've been on the Humira almost 2.5 years now. I appreciate any and all opinions, as it gives me good questions to ask the doctor. I definitely don't want to move on from Humira if it just needs more time. But if the consensus is that it's just not working anymore, then we'll move on. It's just scary since he's only 10, but they come out with new meds all the time, right?
 
Oh man, I hate when they go back and forth like that. We are siting around in limbo land right now also. I say all the time, either tank or get into remission but this back and forth is really trying.

Yes, there are quite a few drugs in the IBD pipeline, a few are in phase 3 trials. There are still a few others already approved left to try. It could simply be that you have been suppressing tnf and the body has unregulated other inflammatory pathways so you have to switch to a different mechanism of action.
 
His Dr called, and his Humira level is 27 - definitely therapeutic and should be working. She's encouraged by the decreased calprotectin, but not happy about the increased sed rate. She said with colonic involvement, it can take several months for the healing to occur?? She's also seen high sed rates when scopes look completely normal. She wanted to know how he was feeling. I told her about the several good days, with the lots of diarrhea days in-between. She suggested waiting another couple months and seeing how it goes, unless the symptom days increase. He had diarrhea 5x on both Monday and Wednesday this week, with stomach pain yesterday too. The back and forth is killing me. Not sure if it's best to give it more time, or have we given it enough time and it's time to move on. Ugh.
 
It's so difficult watching your kids suffer and having to wait it out. Fingers crossed that he will have better days ahead. Your GI did say to wait it out unless the symptom days increase so it sounds like GI is on top of it. Hugs.
 

my little penguin

Moderator
Staff member
So your kiddo is suppose to have diarrhea multiple times a week with abdominal pain for months ????
Did you ask the Gi how she would feel doing that for months and then leaving a high sed rate .
I have seen it before and it never ends well
Sed rate does not increase for no reason
Especially with abdominal pain and diarrhea
Even if it’s not on scopes
It’s there somewhere going on ...small intestine etc...
One kiddo we know had elevated numbers but Gi did the same ignored. Cause it wasn’t too bad right nothing major on scopes so ...it was obviously not an issue -was afraid to change meds (remicade )
Turns out inflammation was simmering in small intestine- ended up with two strictures (ballooning small bowel ) and lost 80 cm of small intestine

Please get a second opinion from another Gi at another hospital
 
My Little Penguin - that's my worry too - how fast can things get really bad? I have a bad gut feeling that it's just not working. :(
 

my little penguin

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My thing is things have been bad for a while
You upped humira and things are still bad
Sed rate is high and fecal cal is still high
Ds has not had a bad crohns flare in a very long time but went through similar with arthritis of sed rate high -joints stiff etc...
While we waited for humira to kick back in after stopping it (months similar to you told it will be good later .... )
Then waited again for Stelara to kick in (8 months of waiting )
This ended with a wheelchair for many months while waiting
And took forever to climb out of that hole of waiting
Which resulted in a drug change anyways and more waiting

I don’t know how long for damage
Some kids it’s quick others it takes longer
Please get a second opinion
Some docs are conservative some aggressive with treatment
Neither is wrong but ...
It’s your kiddo
Fresh set eyes when you have problems is a good thing
 

my little penguin

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Staff member
Update: MRE showed active inflammation of terminal ileum, cecum and appendix.
The scopes showed congested, erythematous, friable, ulcerated mucosa in the recto-sigmoid colon, cecum, ileocecal valve, and terminal ileum. Patchy moderately erythematous mucosa in gastric fundus and gastric body
That is my concern
How do you know this is not getting worse
Since symptoms are the same
Please get a second opinion
 
Well I am going to go out on a limb here and say that humira takes time to work and so changes to get to therapeutic levels can take awhile also. Yes send rate is increased but could be for any number of reasons. Cal pro is decreasing and that is more specifically gut indicator.

I would think If he was tanking you wouldn't have any good days.

It is true the colon takes a while to heal.

Another thing it "could" be us SIBO or IBS. those are pretty infamous for the back and forth nature of things. SIBO is especially common when coming off a flare.

Just offering some reassuring words but would definitely start logging BM's symptoms etc so you have objective, quantifiable data and know when to call the GI. I also would not change meds without another scope/MRE to confirm what you are seeing is definitely IBD inflammation.

FWIW we have been told by two GI's Stelara is much less effective in the colon.
 

my little penguin

Moderator
Staff member
So with humira since he was already on it
Increasing frequency takes 6 weeks tops to be effective at the higher dose
Rarely 2 months
Ds did higher doses or increased frequency 4 times on humira
Add in humira levels are raised already in his blood
How long has he been on the higher frequency ?
What does the Gi typically see as a normal time frame once dose is increased
That would be my question to the Gi
If the gi has no experience ...,
Months is only for initial starting of humira
Not after you have been already on
 

my little penguin

Moderator
Staff member
I will say Ds has had 3 second opinion (3rd was technically switching Gi (all docs ) due to a move
First was at dx abd second was when he switched to remicade
Never regretted a second set of eyes
Most recent (changed Gi due to move )
Confirmed Ds was on the right path and no major changes were needed
So even if it’s “you know what in his case what your doing is best “
That’s where I like to be at with med changes or flares that don’t behave
 
We increased the humira to weekly dosing right after his scopes, so it was May 1. It's been a good 3 months. Today, my husband called me at work to tell me he threw up and had diarrhea a few more times today (he says his stomach hurts "like Crohns". His Dr said if he was doing ok, we'd wait another 2 months, but if he seemed worse, then we'd keep his appointment on the 19th of this month and go from there. I feel like these days of diarrhea, and now vomiting are my signs that we need to keep the appointment and move on from Humira. She had said she's seen cases where the Crohns was in the colon that it has taken longer than usual for healing - up to 6-9 months with an increased dose. I want to ask her to get the opinion of another dr at U of M. They have a lot of them - is it terrible of me to ask her to consult with her colleagues on Ian? We started out with 1 GI from St. Johns, and I liked him, but he wanted to jump right in with Remicade, which I wasn't on board with (of course we ended up on that 1 year later anyways, but gave Imuran solo a try first). We met with a Dr. from Children's Hospital for a 2nd opinion, and he didn't have much of an opinion. Then we transferred care to U of M, since they are supposed to be the best. The only other place I know of would be Beaumont, but worried it may take a long time for an appointment. Now that school is supposed to start back up soon, I'd like to get him doing better. Thank you so much for all of your opinions and advice. We're going camping this weekend, so if I don't respond, I probably have no cell service.
 
Hi nelsonshan, so sorry that your son isn't feeling well. I would definitely keep the app't for the 19th and in the meantime see if you can get another opinion, and don't be shy about asking the other Dr at U of M. As MLP mentioned before, you don't want this going on for months and months longer. Your GI might very well decide to move on from Humira when you see her on the 19th, but in the meantime it doesn't hurt to make those contacts. Hope you enjoy your camping trip. Keep us posted.
 

Maya142

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Staff member
To be honest, I also think Humira is failing. His MRE and scopes were not good. His symptoms are increasing. The drop in FCP is encouraging, but that's literally the only thing that has improved and it still high.

However, my younger daughter was a VERY slow responder when it came to Humira. She was on it every 2 weeks for 2 months. No real response. Upped to every 10 days and then weekly and while she improved a little, she was still miserable. We added MTX after 4 months of being on Humira. After adding MTX and upping to weekly Humira, it took another 5-6 months before she started feeling significantly better. So it really took a total of 9 months before she felt much better!! The only reason we stuck with it that long was that back then was the lack of options. But I'm so glad we did!!

Every month after that, she continued to improve. Humira + MTX worked like magic for her!! It was amazing. You forget how sick your child is when you see them every day. It was only after she was better that I realized how poor her quality of life had been. She became a normal teen. She went to school. She played soccer. She slept through the night. She smiled more.

This was all prior to being diagnosed with Crohn's, so it was for her arthritis. And Humira was her first biologic.

I have read that the evidence shows that the first biologic does tend to work best. My kiddo has been on 8 biologics. Yes, that's right, 8. Do I wish we had been able to stick with her first or second or third biologic? Not really, because they were not working. With her, we eventually figured out that besides Humira, she didn't respond well to anti-TNFs (in terms of her arthritis). We tried all 5 anti-TNFs on the market before finally another type of biologic was approved for her type of arthritis. Then we switched to that and finally saw her improve. So using the same mechanism (i.e. blocking TNF) is no longer recommended for that reason - typically doctors now use 1-2 anti-TNFs and if those fail, they move on.

So that, in my book, is one big plus for switching to Stelara. He's been on two anti-TNFs and he's failed 1 definitely and the other is not working. Since his Humira levels are fine, it seems to me that it's getting to be time to move on.

In my daughter's case, the many years of inflammation led to joint damage and severe pain. She just had her first joint replacements at 22 😢. Her arthritis also went from moderate to unusually severe, partially due to under-treatment.

Interestingly, her IBD always responded well to anti-TNFs. It has gone into remission on Humira, Remicade, Cimzia and Simponi. But her arthritis was a different story.

I think when you are at a fork in the road, a second set of eyes can really help and can't hurt. You could even consider a records review at one of the big pediatric IBD centers - CHOP, Boston Children's, Cincinnati Children's. They see LOTS of cases and that helps.
 
OK. Vomiting and the pain and the increased diarrhea is "getting worse" in my book and justifies a call to the GI. They at least need to look at things and figure out if this could be a bug or flare getting worse. Poor little guy.
 

Lady Organic

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I think that if the thinking of the GI is to wait months to give a chance to Humira, it should be in combo with a kick therapy. Theres no point of suffering or risking aggravating his condition imo. We dont like steroids, but what about a course of ENN? has your son already tried it in the past? IF EEn puts your son in remission, you'll know your answer for sure if Humira at weekly doses is a fail or a success at mainting remission in the weeks or months after the course of EEN. My disease is located in the rectum and whenever we played with medication, I've come to use rectal cortisone each time as a temporary or kick option to avoid complications or aggravation of my condition. If the kick treatment is available and low in side effect, I'd take it 100%. I just dont tolerate or accept any risks of aggravation of my condition anymore. I want to react promptly, before deterioration occurs. Im using mine right now (cortisone enemas) , dealing with Humira loss of response issue as well:( After a speedy recovery, within days when i started it, I am now flaring, 6 months later. I keep thinking about the 4 x 40mg initial loading doses and how the effect was spectacular for me... Hopefully we will come to decide to up my Humira for something closer to the loading dose scenario than once every 2 weeks and get better response. maybe your GI is right that it could take more months, but i'd suggest strongly to add a relief treatment in the meantime.
 
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my little penguin

Moderator
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Imo diarrhea and vomiting is getting worse
Your Gi needs a call

As far as second opinions
Most Gi have weekly meeting with the other Gi st the hospital to discuss issues including tough cases
So your child probably has been discusssed
You really need a true second opinion if your not switching drugs now
That means one of the bigger places
Chop ,Cincinnati, Boston childrens ,Texas childrens

Even if it’s just records review and you don’t go there
Second opinion doesn’t mean your switching docs
It just helps your doc feel more confident about the decision to switch or stay on humira and adding in (steriods een mtx etc...)
Good luck
 
Yes, ironically in the last 10 days, every other day has been diarrhea and stomach pain. It's so weird that he'll have 1 good day, and the next bad. I think we'll keep his appointment on the 19th and in the meantime, I think I'll message her and see if she can consult with her colleagues on what to do. How do I go about getting a records review at one of these other hospitals? We have never tried or been offered EEN, but his diet is terrible. We spent the summer before kindergarten in occupational therapy (this was even before his crohn's diagnosis) because I was terrified of what to put in his lunch - he won't eat any meat (other than chicken nuggets), bread, eggs, pizza, spaghetti, etc... the list goes on. His diet is mac n cheese, chicken nuggets, cucumbers, strawberries, blueberries, yogurt, junk food, and ice cream. He won't even TRY hamburger, steak, regular chicken, etc... He would rather go to bed hungry that even TRY a bite of this stuff. So he may actually really like it, but we'll never know. We went so far as shoving a piece of ham and hot dog down his throat in the past and he threw it right up. I've heard it all and tried it all and it's seriously a mental thing that he won't even try it. My husband has offered him $500 to eat a hambuger, but no go. It's beyond frustrating.
 
That's very interesting what you say about your son's diet. My son's list of foods he would eat was shorter than I liked - he ate relatively healthy but leaned towards only a short list of foods. He wouldn't even try new foods. He would gag if he ended up trying something that he didn't want to try in the first place. I thought this would change as he got older, but after his diagnosis over a year ago, it all made sense to me. He probably had crohn's for years and he developed a coping mechanism of "safe foods" . This is what I am thinking - but in the past year, since he has been on treatment, he is slowly trying things he never would try before. I think your son's list will grow but it is very frustrating to try to have them eat healthy and then feeding them something that you would prefer them not eating. My son is a young adult now but he was like this through all of his teens and late teens.

It will get better as he gets better, and the list will get longer. I understand your frustration.
 
I really, really agree with keeping that appointment and contacting the GI.

That said, "sometimes" when you go back and forth like that it "could" be an IBS or SIBO or constipation type thing going on. Just be prepared to maybe hear that.

On the good days does he have a nice normal BM or is there nothing?

O.K you made me LOL about offering him $500 to eat a hamburger. He is more stubborn than O!

You can try the hiding method. Lots of books about how to sneak some good veggies into spaghetti sauce and Mac and cheese. Tesscorm likes the book by Jerry Seinfeld's wife.

Being an ex vegan, turned vegetarian, turned crap eater (last few months), I don't see anything wrong with no meat products. He has a good base with the cucumbers, berries, yogurt and eggs. Have you tried smoothies? Will he eat bananas? You can hide spinach super easily in a frozen strawberry, blueberry and banana smoothie. I have even left out the banana and still can't taste the spinach.

Hang in there. You have a lot going on. Don't stress too much about the eating habits. You can tackle that after you get him feeling better. Sometimes a registered dietician can help expand a picky eater's palate. Maybe when he is feeling better you can get an appointment.
 

my little penguin

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To get a records review you call the ibd clinic of the hospital you want to do it and the coordinator will explain what they need
Then you sign a medical release form at your current hospital and have copies of records sent
You also release biopsy pathology slides and images from radiology .

Boston childrens is all online but insurance won’t cover it

As far as eating
If he is pain a lot he associated eating xyz woth pain plain and simple
A lot of crohns patients have issues with pork and beef - mine does

Look at your sons diet and the crohns exclusive diet
Very similar
He is eating what feels ok right now
Once his crohns is better then push for eating therapy there are specific programs for kids with EoE
Eosinophilic esophagitus causes a lot of pain with eating due to inflammation so these programs would be better for your kiddo
Texas childrens I believe has one cincy may as well

Your Gi would have already discussed your sons case with her co workers
Harder cases are always discussed On a professional level

Ibs can happen but not woth high fecal cal and inflammation markers in the blood
 

Maya142

Moderator
Staff member
That's very interesting what you say about your son's diet. My son's list of foods he would eat was shorter than I liked - he ate relatively healthy but leaned towards only a short list of foods. He wouldn't even try new foods.
Jo-Mom and nelsonshan, my daughter is like this!! Super, super picky as a kid. Wouldn't eat any veggies or fruit. She wouldn't even eat junk food - no burgers, soda, chips or other snacks. She would only eat certain meats: chicken, occasionally certain kinds of fish and hot dogs. But no other beef, seafood or pork. No matter what we did or said, we could not get her to budge. We let her add foods in her own time - I just felt wrong pushing her harder to eat when she'd leave the room if even the smell of the food bothered her.

Plus, she is REALLY stubborn.

She got a lot better as she grew up. Loves veggies - not a whole lot, but enough. Eats much of the meat she refused as a kid - beef, pork, turkey, fish, shrimp, lamb. She still does have a "Safe food" list which is somewhat short, due to the Crohn's and Gastroparesis.
 
Yes, we also think that he associated certain foods with stomach pain before we knew what was going on, and thus became very picky. It's so hard at birthday parties when everyone has pizza. We have to feed him mac n cheese or chicken nuggets before we go anywhere, lol. And then you think about how they are just processed foods, and is this why he continues to have the inflammation? Ugh. I cannot see him having a NG tube with feedings, but if the dr recommended it, I'd be willing to try. He also has a peanut/tree nut allergy, so getting protein is difficult. Cucumbers is the only vegetable he'll eat.
On his good days, he'll have 1-2 normal BM's. Then the next day he'll have diarrhea and stomach pain. So weird.
I just want more professional opinions on whether to stick out the Humira or change to Stelara. I saw that Boston has the on-line opinion for $675. I would gladly pay this for another opinion. Do you guys think that Cleveland Clinic is good? I saw that the top ped GI are CHOP, Texas, Boston, Cincinnati. I might start the on-line process for Boston though and when we go for our appt on Monday try to sign the medical releases or whatever they need. Any other advice?
Again, thank you all for your opinions!!
 
Darn! I was kinda hoping you would say they were more constipated BM's because then there would be the chance that the diarrhea you are seeing is the soft stuff leaking out around the hard. Guess we can cross that off the list.

I definitely agree with a second opinion if only just for peace of mind. It totally stinks wondering if you are doing the right thing or if there is another approach out there that you are not aware of.

I know Cleveland Clinic adult IBD is good so I would imagine the pediatric program is also good. I actually have been reading a lot about Cleveland another multidisciplinary approach (gastro psych, dietician, surgery etc) and if O needs to go somewhere for a second opinion on the colectomy thats where we are going.

All the hospitals you mentioned are good. I would add Children's of Atlanta (CHOA) to that list.

Those rankings are a good start but that is really all it is. If you read the criteria for the rankings it is a bit vague. They rank pediatric GI which means liver as well. Number of cases and surgical outcome and reputation are important in the rankings. You might not necessarily need a hospital that has good surgery right now. You want and IBD expert. So I would go to the places that have have good pediatric IBD centers. Boston, CHOP, CHOA, Seattle, and I am going to add Mount Sinai to the list. They have two gurus there who do A LOT of research and I love their approach to patient care. There are also great ped IBD docs at lesser ranked centers but I think those are a good start.

Good luck!
 

my little penguin

Moderator
Staff member
Cleveland adult Gi is goid

Cleveland kiddie Gi is not
Similar to adult mayo Gi is number 1
But kiddie Gi mayo is not even close
John Hopkins is the same adult Gi good
Kiddie not so much
 
Nelsonshan,
Offering $500 to eat a burger? Love it. You are my people!

Reading this made me realize my son had crohn’s for as long as I can remember. It wasn’t just picky it was weird. He ate was made him feel ok. His frequent “bugs” and stomach pain, constipation, random “food poisonings” and “car/plane/whatever” sickness, even occasional high ESR that was attributed to a flu, weren’t what they seemed.

General peds need to do a better job putting all of these signs together.

Boston records review was fast for us. If I needed another personally I might try Seattle.
 

Maya142

Moderator
Staff member
Those rankings are a good start but that is really all it is. If you read the criteria for the rankings it is a bit vague. They rank pediatric GI which means liver as well. Number of cases and surgical outcome and reputation are important in the rankings. You might not necessarily need a hospital that has good surgery right now. You want and IBD expert. So I would go to the places that have have good pediatric IBD centers. Boston, CHOP, CHOA, Seattle, and I am going to add Mount Sinai to the list.
Mount Sinai doesn't have a huge department or the resources a children's hospital would have. The pediatric and adult office was combined when we were there - a couple toys for the little kids, but it was very much an adult hospital.

When we went there, there was not a single surgeon who could put in a feeding tube - a fairly common need in sick pediatric GI patients. We liked the doctor and she has done a lot of research, but we have been to both CHOP (for GI) and Boston Children's (not for GI) and they are miles better, in my opinion. They see many more cases and have seen a lot, so if you have a "weird" or "unusual" kid (my daughter is always labeled unusual or unique!) or one with severe disease, you don't need to worry. And they're just more kid-friendly, in our experience.
 
Nelsonshan,

Your story is so much like my son's (with respect to eating habits). His choice of food is so so limited. He however eats pizza, mac n cheese, pasta, grilled cheese sandwich, rice and yogurt (we eat a lot of it at home. We are Indians). I make basic plain yogurt at home every day and that is his favorite :) Steamed rice is his go to. He would stay away from Indian curries, Indian spices and everything related to Indian food. It becomes so hard to feed him every day.

We are also in the process of getting a second opinion from Boston Children's Hospital. This disease is so hard to deal with. My son's fecal cal-protection is 1800. His CRP & ESR is elevated too. We are in the process of starting Humira now. He is currently on 75mg Imuran and Prednisone (40mg).
 

Maya142

Moderator
Staff member
His frequent “bugs” and stomach pain, constipation, random “food poisonings” and “car/plane/whatever” sickness, even occasional high ESR that was attributed to a flu, weren’t what they seemed.
All the same things here - at the time we lived in India, so we assumed my daughter had eaten something that didn't agree with her or it was the water or that she had gotten a stomach bug. And food poisoning...every time she had diarrhea that's what we assumed.

She is also a big fan of the foods you mention momof8yrold - pasta, grilled cheese etc. But won't touch Indian food - too spicy!
 
I'm laughing that you all like us offering him $500 to eat a hamburger!

I started the on-line 2nd opinion at Boston Children's. Do you think there is anything I should request at our appointment on Monday to help with this process?

I reached out to CHOP and they offered a "peer-to-peer consult" - should I bring this up with his dr?

These are questions I'm planning to ask tomorrow - can you all let me know if there's something else I should be asking? TIA!!!

Questions for Dr. Lee 8/19/19
  • Should we continue with weekly Humira, or change to Stelara? Optimize the dose any further with Humira? Do you have any kids his age on Stelara? You said may take 6-9 months because of colonic activity? It’s been 3.5 months. How long does it normally take? How do we know it’s not getting worse?
  • Should we be encouraged by the decreased calprotectin, even though still high? Sed rate increased. When should we next retest?
  • If we stop Humira, can we ever go back to it? Have you had patients do this? How would we monitor for antibodies?
  • If we change to Stelara and it doesn’t work – what is left? Cimzia?
  • I saw that Stelara has indication for 12 with psoriasis, but not Crohns? Why?
  • Other options? He was initially on Pentasa, but they stopped since he had no colonic disease – should we try that again? Entocort? Omeprazole? Carafate?
  • Really struggling with: Flare on the maintenance meds vs no longer working (uncontrolled inflammation)? What if he just needs short course steroids?
  • Also struggling with back and forth nature of things – roughly every other day symptoms since 8/5. Can be 5-6x diarrhea, stomach pain – vomiting once, or can be normal days with no diarrhea/stomach pain.
  • SIBO/IBS? (on top of crohns) breath test for SIBO or how should we test?
  • His diet is terrible. Will only eat chicken nuggets and mac n cheese for meals. Can this processed food be adding to his inflammation? EEN? Dietician? Retest Peanut/tree nut allergy? Who do you recommend?
  • 504 plan for school - since this is first time with diarrhea in school– want him to have free bathroom access – do you need to write us anything?
  • Burning pain in neck, then lower lip 30 minutes after last Humira. (yes, this was new)
  • On-line 2nd opinion with Boston Children’s. You may receive requests for medical records from them. Still planning to see you, just want another thought. I’m very worried about making the wrong decision here about continuing the Humira or changing to Sterlara. Do you ever consult with Dr. Adler or Dr. Zacur?
  • 11yo shots will be coming up– tdap, hpv, meningiococcal – ok to receive?
  • What amount/frequency of symptoms should be considered normal? He’s still growing/gaining weight – so should we not worry as much?
  • Any other tests/labs we should be performing?
 

my little penguin

Moderator
Staff member
Stelara hasn’t been through a drug trial yet for kids woth crohns
But has for PsA

Here are case studies


MEETING NEWSPERSPECTIVE
Digestive Disease Week
Early response to Stelara linked to better outcomes in pediatric IBD


July 24, 2018

ADD TOPIC TO EMAIL ALERTS
WASHINGTON — Children with inflammatory bowel disease who achieve an early response to Stelara tend to have better long-term outcomes, according to research presented at Digestive Disease Week.

In his presentation, Steven J. Fusillo, MD, of the Children’s Hospital of Philadelphia IBD Center discussed unique challenges that differ from what is seen in adult IBD, including disease extent and risk for surgery, particularly those centered on Stelara (ustekinumab, Janssen).
“There are few therapeutic options for pediatric IBD beyond the anti-TNFs,” Fusillo said in his presentation. “Ustekinumab has been shown to have efficacy in treating adults with moderate-to-severe Crohn’s disease. ... While the adult literature continues to expand, there has been very little published in the pediatric population.”
Fusillo and colleagues conducted a single-center, prospective cohort study to determine the response rate to ustekinumab and assess potential differences between responders and non-responders to therapy in refractory pediatric IBD.

Investigators enrolled 20 patients younger than 21 years with Crohn’s disease or indeterminate colitis receiving ustekinumab therapy at the Children’s Hospital of Philadelphia. They included patients with prior anti-TNF failure and clinically active disease.
Patients received an intravenous injection at induction and subcutaneous injections every 8 weeks. The primary outcome for the trial was clinical response defined as decrease in pediatric disease index scores.
Fusillo and colleagues found that 25 patients achieved clinical response by week 6 (52%), and 20 achieved clinical response by their last follow-up (45%).
Investigators found that initial responders at week 6 had better outcomes regarding long-term clinical remission compared with non-responders at week 6 (64% vs. 11%, P< .028). Non-responders appeared to have higher rates of surgery and ustekinumab discontinuation, however Fusillo said neither reached statistical significance.
“There’s clearly some patients that demonstrate response at least in terms of clinical response, but there’s a subset of patients who do not respond favorably, and many of them undergo surgery within a matter of months,” Fusillo said. “There’s a promising role for ustekinumab in pediatric IBD, even in a medically complex and refractory population.” - by Alex Young
Reference:
Fusillo SJ, et al. Abstract 329. Presented at: Digestive Disease Week; June 2-5, 2018; Washington, D.C.
Disclosures: Fusillo reports no relevant financial disclosures. Please see the DDW faculty disclosure index for a list of all other authors’ relevant financial disclosures.

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my little penguin

Moderator
Staff member
Ustekinumab in Pediatric Crohn Disease Patients.
Bishop C, et al. J Pediatr Gastroenterol Nutr. 2016.
Show full citation
Abstract
OBJECTIVES: We describe the use of ustekinumab for 4 patients with pediatric Crohn disease treated at the Seattle Children's Hospital Inflammatory Bowel Disease Center.
METHODS: A retrospective chart review was done to identify patients' clinical data, disease phenotype, treatment history, and laboratory and growth parameters before treatment with ustekinumab and at last follow-up. Adverse events while on ustekinumab were also recorded.
RESULTS: Four adolescent patients with Crohn disease at our center received ustekinumab. All had previously received corticosteroids, methotrexate, azathioprine/6-mercaptopurine, and both infliximab and adalimumab. Patients had varying disease phenotypes. Ages at ustekinumab initiation were 12, 13, 16, and 17 years. Weight ranged from 40.5 to 57.8 kg, mean 49.5 kg. Two patients showed clinical response and remain on ustekinumab. Two patients discontinued therapy because of continued symptoms and disease complications and required multiple hospitalizations.
CONCLUSIONS: Ustekinumab was used in 4 children with pediatric Crohn disease with 2 of 4 patients showing clinical response (1 with persistently elevated C-reactive protein). A prospective study is needed to define its efficacy, safety, and placement in managing pediatric Crohn disease in the future.
PMID
26854655 [Indexed for MEDLINE]

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my little penguin

Moderator
Staff member
If it helps Ds was placed in humira when it was NOT approved yet for pediatric crohns
Only adults crohns and pediatric juvenile arthritis

It got fda approval later

He was also in Flovent at age 2
Not fda approved for kids under 12 at the time
He was fine

Fda approval takes time
Stelara was approved for adult psa first
Years later pediatric psa
Given Stelara was only approved for adult crohns in 2017 (right when Ds started it )
The pediatric approval will come but again is typically a few years off

Rarer diseases they don’t get fda approval only
Only a handful of case studies for a drug if your lucky
Ds has one of those and takes a drug that is fda approved for kids but not necessarily that disease
Since none are approved.
 

my little penguin

Moderator
Staff member
As far as humira once you stop it most don’t go back
They don’t see as good of a response
There are antibody bloodwork that can be done prior to restarting

Other drug options for pediatric crohns
Simponi (especially colonic version )
Cimiza
Entyvio
Stelara
ivig ( used in refractory cases)
Ilaris (used in refractory pediatric cases )

Which considering a few years ago when Ds started there was remicade /6-mp imuran mtx /Pentasa and asacol
Only remicade was pediatric approved
None of the other drugs
 
Looks good to me. JYst a comment on going back to humira...our current GI has told us that they are having success with returning to remicade and humira as long as you have been off both drugs for at least a year.

Also, earlier in the summer we were seeking a second opinion for O and I mentioned Cimzia and the person I was talking to said, "we don't use it anymore,it just doesn't work"
 
i would also ask if it was worth scoping and imaging again prior to making the decision to switch meds. Just to make really sure that the symptoms you are seeing are from Crohn's disease activity and not something else.
 

Maya142

Moderator
Staff member
Looks good to me. JYst a comment on going back to humira...our current GI has told us that they are having success with returning to remicade and humira as long as you have been off both drugs for at least a year.
My daughters both tried Humira multiple times. My older daughter had great success with it both times - in fact, the second time she lasted longer on it, about 5 years I think. She did try other biologics in-between so there was a gap of more than a year.

My younger daughter did very well on Humira the first time (but only after it took 9 months total to work!!) and then re-tried it about a year later. It did work for her, but not well enough.

If Humira fails, then he can try Stelara. Like MLP said, there are plenty of kids on Stelara and Entyvio now and neither are approved for kids yet. They are in trials and as far as I know, there have been no safety issues. Our children's hospital initially used them mostly on teens and young adults and then later started using them more and more on younger kids who did not have other options.

So you have Stelara left, Entyvio, Cimzia and Simponi (approved for UC but sometimes works for Crohn's - my daughter did very well on it). If he has mostly colonic disease, then Xeljanz may be an option, though it is only approved for UC so far.

My guess would be that if you have to try all those meds, by that time, there will be new ones. There are lots in the pipeline - IL-23 inhibitors are looking very good, I believe. Similar to Stelara (which is a IL-12 and IL-23 inhibitor), but just block IL-23. There are also JAK inhibitors (similar to Xeljanz) which are looking good in trials, I believe.

Good luck with the appt. - we will be thinking of you!
 
Just wanted to send my support your way. Good luck. I hope you have an appointment that answers your questions and a treatment plan that you will feel comfortable with. You are on top of things it seems and a great advocate for your son.
 
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