Calprotectin 926, Sed Rate increased

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So, I expressed my concern about his back and forth nature of symptoms and given that recently Cal pro went up while Sed went down, and most recently how cal pro went down, and Sed went up. She said all of that is what makes our decision so hard. She said she spoke with her colleagues and everyone agrees that he should move on from Humira, to Stelara. She said we could also wait another month and repeat labs and see how symptoms are, but she doesn't want to wait more than a month. I was glad to hear that. But something kind of clicked when she said that she's had patients that "feel great" and upon scoping, things look terrible, so they have to act. Even though he has good days and seems fine, he may not be. And we know from recent scoping that active inflammation was there - so that combined with increased inflammatory markers, and symptoms kind of complete the picture that Humira isn't working.

She really didn't think Pentasa/Asacol would helpful at all for Crohn's. She also thinks Entocort may possibly help initially, but it's not effective in the end. She really feels that he's already using medication that should be maintaining things, and because it's not, we need a different mechanism of action. She agreed that Humira can be retried in the future, should we need to go back, but only after antibody testing.

When I asked her "what if the Stelara doesn't work" - she said they can do a temporary diverting surgery with a bag to let the colon heal; Then afterwards can stay on Stelara, or change back to Humira if no antibodies.

She said Sibo/IBS wouldn't cause the inflammatory markers to be elevated. She thinks it's the IBD causing symptoms.

She didn't think it would be necessary to rescope before changing meds, since she thinks our plan would stay the same regardless (giving it another month, or moving to stelara).

She wasn't mad about seeking the Boston 2nd opinion. She said she welcomes 2nd opinions. She is also willing to do whatever we need to get a 504 in place at his school. We haven't had one in the past since it was mainly stomach pain, and not diarrhea, but now I think we need it.

She wasn't as concerned about his diet as I am. She said that "Western diet" can cause inflammation, but there's nothing stating that certain foods should be restricted. She said EEN can bring a patient into remission, but you shouldn't have to do this is the maintenance medications are working. I also want to have him allergy retested (to see if true peanut/tree nut allergy - he used to eat peanut butter all the time before we had him tested 3 years ago and it came out very positive - said even though not causing anaphylaxis, could be aggravating crohns, etc..), but that would be a good source of protein for him if we could reintroduce it. She said to wait until things calm down before doing that.

So, they are going to start working on the PA for Stelara. We're going to continue the Humira and monitor symptoms, and repeat labs in 2-4 weeks. Then we'll make a final decision on what we're going to do. I'm really hoping the Boston opinion is back in that time frame.

I feel like everything she said made sense and I have a clearer picture of what to do. I really hope these next 4 weeks give us the clarity we need to move forward - or not!
 
Good luck woth Stelara
It may take a while for approval
Since he is under 12 that is harder to get approval than under 18
Takes a while
But hopefully by then you will have a clearer path
 
Sounds like a great appointment and she pretty much concurred with everything your gut was telling you. Hopefully the Stelara approval comes in quickly and you can get on your way. Stelara takes a while to kick in, did she mention any bridge therapy for while you are waiting for it to work?

Also, when you get a chance, did she mention why they wouldn't try Entyvio before a possible diversion? Is the disease activity that is causing him trouble now primarily in the colon? Entyvio is supposed to be more successful with colonic Crohn's than Stelara BUT I honestly think that when you are deciding to leave Humira/Remicade it is a toss up and very much up to GI experience and preference. BUT I am curious as to why they would move to surgery/diversion before trying another agent. As you may know, we have met with a surgeon for total colectomy for O but now all of a sudden if Entyvio is a fail our GI said we will give Stelara a go. Maybe it has more to do with temporary diversion?
 
Honestly, I was shocked when she said they'd do a temporary diversion if the Stelara didn't work. I feel like I would definitely want to exhaust my drug options before a surgery like that. She just said she wouldn't consider Entyvio since he had active inflammation elsewhere - his terminal ileum was the worst area. I think she thought the Stelara may continue to work if given the colon a chance to heal by diverting the stool. Honestly - I'm not sure anyone really knows, given that everyone is different and there doesn't seem to be a whole lot of right/wrong answers - just best guesses. That's why they call it "practicing medicine" I guess. She didn't mention a bridge. She seemed pretty against any sort of oral steroid/Pentasa/Entocort, etc.. She just said to keep doing the Humira until the Sterlara approval comes thru.
 
That will be an issue
Stelara is NOT EFFECTIVE for at least 6 months
He will need a bridge
That isn’t optional
It would be like going without meds
For 4-5 months
Not something anyone would do
See what the second opinion says please and ask about bridge therapy
 
I totally agree on the "practicing medicine". Our family usually says medicine is just as much art as it is science.

What I can tell you about surgery is we were told not to think of surgery as a "last resort". It is just another treatment option. Especially with a temporary diversion. They have A LOT of success with diversions and then you get to revert back. Our team, GI, attending GI's, surgeon and ostomy nurse were very careful to tell us that you don't want to wait until it is too late to do the surgery because then you run the risk of A) a more complex surgery but more importantly B) the maintenance meds not being able to hold the disease after the surgery. For my daughter there was a C and that was the fact that her severe disease is in her colon and by waiting and trying too many different meds we were risking toxic mega colon and rupture.

If the worst of his disease is in his TI then absolutely I would go with Stelara first as it is much more successful in small bowel Crohn's than Entyvio.

I disagree on the bridge therapy. He NEEDS a bridge therapy. You can not let him go untreated for all those months. The disease will only get worse making it harder for the Stelara to be able to kick back the inflammation. She might have just been against the steroids right now but be planning to add them if you have to withdraw Humira. I would definitely reconfirm that with her as I have never heard of anyone switching to either Stelar or Entyvio without bridge therapy.
 
Steroids because we are talking months not the usual 6-8 weeks. But EEN would work. Our GI even tried Tacrolimus with O because she had been on steroids so much in the previous 18 months. Tacro didn't work. Steroids are barely working:/.
 
Glad you have a plan going forward. It does sound like the appointment addressed many of your concerns. Hopefully this next month will not be terrible for your son and you get that clarity you need to move forward. It is so tough especially since school is around the corner. Always easier when you don't have to worry about that, but at least something is in place. Don't worry about his diet at the moment. You can figure that out when he is feeling better. When he is better, that is the time to introduce new possibilities. Hugs.
 
That's nice to know that the appointment went well and you are happy with the doctor's recommendations. I also agree on the bridge therapy. You do not want your kid to go without medicines for 4 to 6 months.
My son is flaring too from the last 8+ months. We used entocort as a bridge therapy until the increased dosage of Imuran kicks in. But, that didn't work. I'm not so happy about increasing the Imuran to 100 mg and do mono therapy for my son. So, we started him on full dose prednisone (40mg) for a month, then very slow tapering along with 75mg Imuran too. We are waiting for the approval for Humira. Meantime, I'm trying to get second opinion from Boston's Children's Clinic too. Hopefully, by the time we taper prednisone completely, Humira kicks in.

My son is currently on full dose steroids along with 75mg Imuran .
 
I think that was a great appointment but I agree you need a bridge. We were told both Stelara and Entyvio are "slow acting" and Stelara can take 6 months or more to work. Same with Entyvio - except we were told that could take up to a year to work 😳!!

If he fails Stelara, I'd definitely get a second opinion before jumping to surgery, preferably at one of the big IBD centers that see lots of refractory and complex cases - Boston Children's, CHOP, Cincinnati Children's and Texas Children's all have great IBD programs. I know you're getting a second opinion now, but another before surgery would make sense to me, since that's a pretty big step to take.

If he'll do EEN, either by drinking shakes or using an NG tube, then that would be a great bridge. Has he ever had any kind of formula before? Do you think he'd try it? It tends to be easier with younger kids, based on what I've read on here. My daughter hasn't done EEN but has done 85% formula/15% food. She found EEN too hard, but she was older (16). And there are many kids on here who've been able to do it.

I agree with his GI that if the maintenance med is working you wouldn't need EEN but in his case the maintenance med isn't working and it's going to be a while before Stelara kicks in! So EEN really makes sense. Steroids, of course, are the other option. Both have pros and cons and every kiddo is different.
 
So, I asked his dr about a bridge, and she said "
To see symptom improvement with Stelara, that depends but some see improvement in days. To truly be able to assess for response, I would probably need to see how he is doing over the coming weeks afterwards and most studies reevaluate months after.
We would still continue Humira for now but would stop once he starts Stelara. "
So she said it may work quickly??
The PA went thru. They can get him in on 9/13th for the infusion.
I'm freaking out now.
He's had a week of good days - basically since his appointment on the 19th. The only thing I've noticed is that he's more tired than normal.
I was going to do labs in a week, and see where we were with labs/symptoms before we change for sure.
I wish the Boston opinion would come back also, but they are still data gathering.
We've tried pediasure, and a certain formula in the past - pediasure peptide? But he wouldn't drink it. Not sure if it's something I should try again? Is there a certain one you'd recommend?
 
Interesting that the doctor said Stelara could work that fast. Having labs next week is good. This way you can determine if his inflammation markers have gotten better/worse. It's great though that he can start Stelara quickly if need be. Don't freak out - it's not bad. Although he could potentially start Stelara on 9/13, it doesn't mean he has to if you are still gathering info and determining what's going on. I think next week's labs will be helpful and you might hear back from Boston too. I think it is always overwhelming when there is new treatment considerations/changes. I'm sure you will get some helpful suggestions from the other members. Try to breathe - it's great he is feeling overall better. Hug.
 
All of the studies stated 6 months to be effective for Stelara in AVERAGE some up to 12 months
Not days

Most get iv solumedrol with the Stelara loading infusion
That dies make the kiddo feel great for a few days to a week
Then the steroids wear off and reality hits

Hope Boston can get back to you
Since no bridge means bad flare which is harder for the med to over come

Any shake is ok
Carnation instant breakfast (as extra not sole source nutrition)
Pediasure
Kids boost
Special k (as extra not sole source nutrition)
Kate farms
Peptamen jr (semi elemental)
Resource breeze (not sole nutrition)
Ensure
Ensure clear (not sole nutrition )
Neocate splash (elemental)

Gi office should have plenty of samples to try
 
Well if he is feeling and doing better, I would definitely want to see those labs before I would change and would get those updated labs to Boston ASAP. Are you pulling a fecal cal pro test as well?

Changing is hard but as we have seen around here numerous times it is part of disease management. Our bodies are smart and when you suppress one disease mechanism for so long it up regulates another. That is just the way of this disease. Thankfully there is enough money to be had with IBD drugs that Pharma is working on lots of options due to come out in the next few years so hopefully our kids won't run out. Also, hoping that they will come up with a cure!
 
We've tried pediasure, and a certain formula in the past - pediasure peptide? But he wouldn't drink it. Not sure if it's something I should try again? Is there a certain one you'd recommend?
Click to expand...
Well, it depends. If you want to do EEN, then some GIs say any kind of shake is ok as long as the kiddo tolerates it and drinks it. In that case, most kids would choose a polymeric shake like Pediasure, Ensure, Boost Kids etc. because they are most palatable.

Some GIs prefer to use semi-elementals formulas for Crohn's patients, since they are easier to digest. Our GI did - she gave M the option of Pediasure Peptide and Peptamen Jr. I think there are more options now - Kate Farms might be semi-elemental too. Semi-elemental shakes are definitely less palatable than polymeric - I've tried my daughter's and I think they taste sort of medicinal. I can understand why kids hate them. My daughter hated Peptamen Jr. at first but eventually got used to it. However, she was never able to drink enough to even maintain her weight, much less gain, so we ended up with a feeding tube. Other kids prefer the feeding tube from the beginning and say it's much easier than trying to drink. My kiddo agreed with that once she got her tube - it took the stress of eating away.

Some kids do great with polymeric shakes. Some need semi-elemental shakes or even elemental shakes (such as Neocate or Elecare). It really just depends.
 
I spoke to a dietician about his poor diet and possibly trying elimination diets - even though he doesn't eat much of a variety to even try an elimination diet - to try to eliminate gluten or dairy - and she suggested OWYN as a protein drink option? Anyone ever heard of it? I noticed it wasn't any of the ones listed above.
p.s. after a week of good days, he's had diarrhea 4x today.
 
Ahhhh...then you know you are doing the right thing! I hate that. When things turn good after you just sounded the alarms and put all kinds of actions into play. But then feel guilty when I am a little tiny bit relieved when the bad stuff starts happening and I say, "Oh good! I am not crazy".

I wonder if the good days increasing means things are healing more....just my Polyanna wondering.

Never heard of that drink. Did the dietician suggest it for exclusive use or supplemental?
 
I looked up Owyn
Sounds similar to orgain
Only issue would be but allergies
They don’t put nuts in it
But most protein health companies use shared lines with others and nuts are a big healthy thing to add

They test for the presence of allergens which is only done when they typically shared lines or facilities

Other wording companies use is “good cleaning practices “ which means In theory they break down the whole line clean it and no residue is left behind

Silk does this - but my kiddo reacted
Ripple milk also states nut free on the bottle
But if you read the fine print (made in a facility with nuts )

Just a heads up pea protein is foul
My oldest non ibd kiddo drinks orgain and couldn’t stand it at first when orgain switched from rice protein to pea protein
 
So...the Boston opinion is in! It was from Dr. Jodie Ouahed.

She basically agreed that changing to Stelara should be his next step.

She also said that he should change from imuran to mtx (due to the possibility of a more fatal lymphoma with Imuran that is harder to treat). I know you guys have mentioned that before. I'm not sure about that and how I feel about changing 2 meds at once though. Do you think it's reasonable to wait until we're established on the Stelara to change to mtx??

She also suggested looking into seeing an immunologist since he was diagnosed so young (veoibd) and see if there are genetic factors that may tailor his treatment.

She also said that she saw no testing of immune response to Hepatitis B, and to get tested for GGT level, vit b12 level, folic acid level, and get a DEXA bone scan since the inflammation of CD can cause bone weakness.

She suggested EEN or partial EEN and seeing a nutrionist that specializes in IBD. I know he won't do EEN fully. I'm going to have him try the OWNY I ordered tomorrow. If not, then maybe the Carnation Breakfast drinks at breakfast and lunch?? I know they don't have as much protein. Then with his normal dinner/snacks??

I took him for bloodwork Tuesday, and we turned the stool in Wednesday, so I was going to get a copy of the labs on Monday (not sure the cal pro would be back tomorrow or not).

Right now he's still scheduled for the Stelara infusion for Friday the 13th (go figure). I want to see the labs and discuss all this with his dr before then. Hopefully that's possible.

Also, I'd like him to have premeds before the infusion, given his severe reaction to Remicade. That's reasonable, right? Do you think Tyl/Benadryl beforehand is enough, or should I suggest an IV steroid?
 
Well it is a totally different molecule so there is a good chance he won't have an allergic reaction so I can see the GI saying it isn't necessary but as a mommy, I would feel better premeditating so I would go for the Tylenol/Benadryl. Although, I think MLP once said that most kids get IV solumedrol at loading doses.

I don't see any harm in waiting to switch the Imuran. The studies that quote the increased risk usually say "any" Imura exposure so waiting a little while will not drastically increase his risk, I don't think. The risk will still be there if you take him off although I totally agree on witching just to be on the safe side.

The only problem is that Stelara takes a long time to kick in. I don't see the second opinion docs suggestion as to bridge therapy. Unless she was thinking the EEN or partial EEN would handle the bridge. In which case, Carnation Instant is not suitable for this purpose.

How is he feeling symptom wise?

I would also be curious on the lab front. Cal pro might be back by Monday. Ours usually takes about 4-5 days.
 
So your wanting to wait on drug switch ???
Imuran is no longer given for a good reason
Once you stop the risk goes down for the fatal T cell lymphoma ( high rate in young male -teens with biologics plus immuran)

Changing to mtx is a good thing
Dexa scans are standard

Veo ibd - Chop has a center focused on that and will do the genetics free as part of an nih study

Stelara loading dose
Ds was given iv solumedrol at his loading dose
Basically because he hadn’t been on humira for months and was flaring badly

He switched from remicade (reaction ) to humira no big deal
And then to Stelara loading dose woth iv solumedrol

Benadryl will NOT stop an allergic reaction period
It’s a comfort thing
Iv solumedrol will NOT stop an allergic reaction
But the hope is it would lesson one
Ds reacted to remicade the second time while on iv solumedrol at the infusion

Only a epi can stop a reaction in progress
But even that can’t stop all reactions

The good iv solumedrol will give you an idea of how sick your kiddo really is

It’s like magic for 2-3 days
Normal kiddo then the floor falls out since Stelara does not kick in quickly at all

Stelara takes 6-8 months average to be effective

We thought it was kicking in after the loading dose
Thinking iv solumedrol couldn’t be that good

It was the solumedrol- because Ds got worse
His sed rate kept climbing
Thus is a kid with normal blood work for close to 6 years prior to Stelara change
And he was still on small dose of pred ( less than 10 mg )

I know you don’t want to change meds
I know it’s scary
And I was ready to toss Stelara more than once waiting for it to work
Because no one prepared us for it truly taking 6-8 months
We heard like you 6/8 months but docs were hopeful it would kick in faster
That just makes things worse when they don’t plan for it

Ds last fecal cal was undetectable less than 15
So Stelara plus mtx can work
 
I honestly agree on the switch to MTX. All the Boston doc's suggestions were good. He definitely should have a DEXA scan - my daughter has one every year because she had low bone density (osteopenia). In her case, it was from being very malnourished and underweight and also having very active arthritis (inflammation can cause low bone density) and of course, steroids. Once we got her on formula (through a feeding tube - she just could not drink enough) and she gained weight and got nutrients through the formula and supplements, and did a LOT of physical therapy, her bone density became normal. It is at the lower limit of normal but she went from osteopenia to normal bone density!

Weight bearing exercise is good for building bone density. I know for girls, they can gain bone density till their early 20s (and my daughter did, around 18-20) and I think even later for boys. So if he has low bone density, you have time.

In terms of Imuran, they are really trying not to use it in kids, particularly boys. It has a higher risk of cancer, including the fatal kind of Lymphoma found in adolescent/young adult males (mostly, though girls can get it too). It also has a higher risk of infection. Most kids are able to tolerate MTX and there are lots of tricks you can try if he has a hard time with it. But honestly most kids tolerate it - it's used so often in arthritis that sometimes pediatric rheumatologists call it Vitamin M!

In terms of being allergic, remember that Remicade is made of murine - mouse protein. Most biologics made now are made from humanized protein - including Humira for example. I would imagine Stelara is too. So the chance of a reaction is much lower than with Remicade.

They may give Solumedrol if he's really flaring but like MLP said, it is only sort of a "boost" to help while Stelara kicks in. The effects of Solumedrol don't last very long, so most kids need steroids (like Pred or Entocort) or EEN as a bridge. Partial EEN is really doable if you consider a tube, if he won't drink.

I also recommend the VEO IBD center at CHOP - I've heard really good things from several parents who have been there (my kiddo was diagnosed at 16, so didn't go there, but did see a GI at CHOP).
 
Hi Everyone! We started Stelara in September. After the infusion dose, he had a really decent 8 weeks. I could tell about 10 days before the next dose that he was having a lot of symptoms, so thought maybe it was wearing off. After the 1st shot, it never really seemed like it kicked in (I know it can take awhile with the Stelara to work). He's due for his next dose on Friday. We just did Stelara levels, and it came back today at 0.9 with no antibodies detected. Does anyone know what a proper Stelara level is? I'm guessing that's too low, so they may need to increase the interval? Thoughts?
 
He hasn't been doing well. He did well the first 8 weeks after the initial infusion, and we thought it was too good to be true. Since the 10 days before his first injection he hasn't been doing well. His ESR and CRP are up, calprotectin slightly up, RBC, HG, HCT are all low. He's been having blood in stools and when he wipes, and using bathroom up to 8 times/day. He looks terribly pale. The Stelara level just reported today, so haven't talked to his dr yet. It's hard to find Stelara level info on-line, but it seems like 4.5 is a level that corresponds to reponse? Just trying to gather info before talking to his dr.
 
Oh so sorry to hear this. I know for remicade levels, my son's GI likes to see it to be about 8 and anything above 4 is therapeutic for some but not sure if Stelara is the same. I hope you find some answers. When my son started remicade, his doses were too low and levels were a near zero, and he wasn't getting completely better although it was helping his arthritis, not his crohn's as much. It took awhile to figure it out and once the right dosing/timing was maintained, it made a world of difference. His level is at 10 now. So it's a matter of finding the right combo for your son. Eventually, he will get better, but I know it's tough to watch your son like this. Hugs.
 
The loading dose is very high
Ds saw similar results in aug 2017
Then they went to every 8 weeks
Miserable high sed rate etc...
Fought insurance company for months
Was ready to drop Stelara
Finally in March 2018 got approval for every 4 weeks
Sed rate dropped and within two shots at 4 weeks he was much better
They didn’t have a level test then so not sure where Ds was at
He also combined Stelara with mtx even at the beginning
There are papers on needing higher frequency


P625
Ustekinumab use in Crohn’s disease: effectiveness of dose escalation
A. Greenup, G. Rosenfeld*, B. Bressler
University of British Columbia, Gastroenterology, Vancouver, Canada
Background: Efficacy of ustekinumab (UST) in Crohn’s disease (CD) has been demonstrated in clinical trials. In the absence of therapeutic drug monitoring, empirical dose escalation has been considered as a strategy to optimize response in patients with either primary or sec- ondary non-response. Efficacy and safety of UST 90mg subcutaneous (SC) every 4 weeks is not known.
Methods: A retrospective, observational study of compassionate use of UST in CD was conducted at a Canadian tertiary centre. A subset of patients in whom dose escalation (90mg SC every 4 weeks) had occurred was identified. Symptomatic response, defined as physi- cian documentation of improvement of CD-associated symptoms and continuation of therapy, following dose escalation was assessed, as was biochemical or endoscopic response if available.
Results: Ustekinumab was dose escalated in 16 patients (9 males) of median age 47 (IQR 34–54); disease duration of 12.5 years (IQR 8–18) and location of ileal (4); colonic (4) and ileocolonic (8), with accompanying perianal involvement in 8 patients. All patients were anti-TNF experienced. Fourteen patients had been induced with standard SC dosing (90mg Weeks 0, 1, 2) and 4 with higher SC dosing (270mg Week 0; 180mg Weeks 1 and 2). Dose escalation occurred for primary and secondary nonresponse to UST in 7 and
9 patients respectively. Nineteen percent (3/16) of patients had a re- sponse to dose escalation, while 10 patients have ceased therapy. A myopathy developed in one patient and was considered possibly re- lated to UST; dose has been subsequently de-escalated. No additional significant adverse events were reported in the remaining patients who received dose escalated UST.
Conclusions: In this subset of real-life experience of UST use in pa- tients with CD, maintenance dose escalation to 90mg every 4 weeks had a modest benefit in achieving a clinical response. This may be suggestive of the mechanism of loss of response to UST being driven by factors other than low bioavailability due to processes such as rapid clearance. Further assessment in larger cohorts as well as the use of therapeutic drug monitoring will be important to evaluate the usefulness of dose escalation for patients on UST.
Click to expand...

From
https://pdfs.semanticscholar.org/ce...93.589182903.1577891249-1142577677.1497227313
 

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