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WindingRs

WindingRs

Joined
Sep 12, 2020
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Emailed our GI at mid night on Friday 😂, but hard to wait.
  • June 2021: started Remicade
  • July 2022: Calprotectin over 1200 and increased Remicade dose
  • December 2022: Calprotectin 800
  • February 2023: Colonoscopy showed crohns has spread, and started Skyrizi
  • May 2023: Calprotectin 400.
Not sure if this is a good news or a bad news.
 
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Sounds good to me. Skyrizi is known to be a very slow acting drug but yeah, I would be hoping for a bigger drop. Remind me is the trouble area large or small bowel?
 
crohnsinct said:
Sounds good to me. Skyrizi is known to be a very slow acting drug but yeah, I would be hoping for a bigger drop. Remind me is the trouble area large or small bowel?
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Originally, when he was diagnosed he only had fistulas, no intestinal manifestation at all. When we did colonoscopy 6 months ago his entire colon was inflamed. Doc said no need to do upper endoscopy or pill cam as the results wont change his course of treatment. So we know he has crohns in large bowel but not sure if it is anywhere else.
 
Ahhhh yes! Then 400 isn't terrible at all for large bowel and I would be rather comforted that Skyrizi brought large bowel disease down a notch as it isn't supposed to work as well or as fast in the colon as the small bowel. Cautiously optimistic.

Were his fistulas healed at the colonoscopy? Fistulas are a bear to get rid of and from what I have heard the anti tnfs are the most successful. Doesn't mean other drugs don't work though.
 
Well it’s definitely a drop! As said above, we know Skyrizi can take a while to work and it’s only been 3 months. The fact that it’s dropped from 800 to 400 is already is a good sign!!
 
Thank you so much all! You moms know a lot.

crohnsinct said:
Were his fistulas healed at the colonoscopy?
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Remicade did not heal the fistulas (he had 2). We did LIFT on one last summer, which was successful and confirmed by colonoscopy it is healed. Probably will do LIFT on the last one this summer.
 
My GI (bear in mind I’m an adult not child) says normal person calprotectin should be less than 50, once Crohn’s has struck, he rarely sees patients back to that. Under 250 he will accept. Above that he worries.
Skyrizi being slow acting you are definitely going on the right direction. I had to combine Stelara with careful ish diet (no gluten, minimal artificial or processed, loosely IBD AID) to get and stay under 250.
So I would say looking hopeful and further reduction at next test would be nice.
 
My kiddo got to under 15 for fecal cal for years on humira and now Stelara
But his is small intestine mostly
But just so you know it is possible to get to that goal
 
LOL @my little penguin both of my girls say calpro under 50 is the stuff of legends like unicorns and fairies!

My daughter with small bowel disease has never gotten under 150 and she has had an uncomplicated disease course. O with all colonic disease…well…we can't go by her but in my distant memory, 7 years ago when she was in remission her calpro sat in the 150-200 range.

My point is, you have to know your kid. A 150 for one kid could mean moderate to severe inflammation and in another kid the bowel looks good. This is why I always say, try to get a calpro around scopes so you know. Recently, T got her scopes and her GI was surprised at how bad things looked for the calpro she was resulting at the time.
 
@crohnsinct I think recall O once having a fecal calprotectin of <15 once!! Didn't her younger sister accuse her of sending in someone else's poop?!! While she was in college and I think on steroids? Or perhaps it was when she was a super high dose on Entyvio. I just remember it because it was so funny her sister accused her of sending someone else's poop. I do remember that it didn't last though.

My daughter just had a fecal calprotectin of <15 on Remicade. I think this is only the second time though, in 10 years. She's closer to 50 in remission normally and when she flares, it can be anything from 120-500.
 
LOL! YES! You are right @Maya142. It was a bizarre one time thing and I forget what it was just prior and right after. But it was super low and unbelievable and that was when the "legends" thing came opals I think.
 
LOL! YES! You are right @Maya142. It was a bizarre one time thing and I forget what it was just prior and right after. But it was super low and unbelievable and that was when the "legends" thing came opals I think.
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I think it was really high before...maybe she did send in her roommate's poop 😂!! I do remember it being a one-time totally bizarre thing.

i am amazed how much your kiddos know about their condition. Mine is totally hands off. Only goes and gets his injections. Thats about it.
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You know, I have one kid who was very hands-off with her diagnosis - didn't tell her friends at school etc. But eventually she came around and was able to start talking about it.
The other one was very comfortable telling her friends she had a chronic illness. All kids are different. And he's a boy and he's 17...17 year old boys don't like to talk much anyway! He will get there.

My daughters both say that seeing a psychologist really helped them when they were around that age. My younger daughter's GI absolutely insisted she go and she resisted, but eventually she did. She ended up loving her psychologist and said it made a huge difference. She even said "Mom, why didn't you make me go sooner?" (which is as close as I'll ever get to hearing "Mom, you were right" - now that is the stuff of fairies and unicorns!!).
 
I'm confused by how much calprotectin can bounce around. My son was in the 600s before starting Entyvio. Six months after starting Entyvio, it was 85. We thought it was working. Then six months after that, it was 577, and a scope showed things were bad enough to switch meds (now trying SKyrizi as well).
 
@momsa How many consecutive cal-do's did he have at <100? Sometimes you can have a one off blip. Both ways, high and low. But if he was that low for a while then he could have just been a secondary loss of response. It happens. I am curious, did they try any adjustments to Entyvio before switching?
 
Thanks so much for taking the time to respond.
He only had one below 100, but it has only been measured about 2x/year. Maybe that's not often enough?
The Entyvio was moved from every 8 weeks to every 4.
What I always wonder is how you separate response/loss of response from the fact that this disease seems to be erratic and have all sorts of ebbs and flows on its own.
 
And sorry, I was trying to respond to comments about calpros being all over the place, I wasn't trying to "hijack" this thread.
 
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Oh yeah, you need much more frequent calpro monitoring until you have gotten to a good remission point. So I wouldn't put much stock in that one result at 85. I would want 2 or 3 consecutive monthly low values before I would stand down.

Don't worry. No one is accusing you of hijacking. We understand fully!
 
Oh yes calprotectin can vary wildly, even from day to day. It’s possible he was responding to Entyvio and then stopped responding. My younger daughter is like that with basically every biologic for her arthritis. They all help some but eventually stop working within a year or two. It’s tough because you don’t want to go through meds too quickly but you also want to balance that with making sure no permanent damage is done.

When my daughter was not in remission, her GI did calprotectin every 3 months at the very least. Sometimes more often. The challenge is that sometimes insurance companies don’t cover it after diagnosis but ours always has, so we’ve been able to have it done frequently.

@momsa did his GI ever check to see if he developed antibodies to Entyvio?
 
Entyvio usually does not have an issue with immunogenicity. Maybe when you stop it and then restart but interestingly he more you keep using it the lower the antibodies will go.
So they usually don't nestlike they do in the anti tnf drugs
 
That was my understanding as well about immunogenicity of Entyvio, which is why I wonder why my son's calpro went so low after 6 months of it and so high after a year of it. My more general confusion is over how to tell whether something is a result of medication when this disease seems to have such erratic ups and downs on its own.
 
Well, I think if fecal calprotectin goes down on a medication and stays down, then the disease is being controlled. If it comes back up and scopes show worse disease and narrowing, then I would say the med is not working.

I think the point of the meds is to prevent the ups and downs of untreated Crohn’s, so while you certainly can have a mild flare while on meds, you shouldn’t have severe flares. And if you do have a severe flare, then you can hit the disease with steroids or EEN and adjust the maintenance medication dose or frequency (or both). If all that fails and the flare continues or scopes look worse, then the disease is clearly not being controlled by that particular medication and you need to switch or add something.

That is my understanding but perhaps @crohnsinct can explain it better.

Also, I did want to add that you can lose response to a medication without having antibodies. My younger daughter, for example, has not had antibodies to many medications but they still stopped working (such as Humira for example).
 
Maya is spot on regarding all issues.

If the disease is going up and down, the meds aren't working. Little tiny flares that just need a little something, yes but not huge and ongoing or frequent swings. Further, it is possible for meds to work initially and then a patient lose response after a while. Remicade worked for O for 3 years and then it just didn't. Remicade worked for T for 8 years and then it just didn't. There are lots of things the docs do to try to recapture response, raising dose, shortening dosing frequency, adding a med etc but at some point you cut your losses and move on.

I am still suspect of that one lonely low calpro. It was just one value. It could have been anything. It could have been a weird sample that just happened to not have any neutrophils in it. It could have been transported by the lab improperly. It could have sat on the bench too long. It could have been a very weird good day for your son. This is why you need frequent and ongoing testing to really make sure there is remission. I am surprised your physician didn't test more frequently.

FWIW Skyrizi is the new wonder drug that all the GI's we know love to use so here's hoping you have some success with it.
 
Thanks for your explanations. I think what you are saying is that the meds should help to flatten the bumps so to speak. That makes sense, because my son's one flare in terms of symptoms on Entyvio only lasted somewhere around three days. Three days of low grade fever and lower appetite was all. But scopes showed narrowing in his sigmoid.
I guess we'll need to do more frequent calpros - my kid hates them, but I guess that's the breaks. We certainly shouldn't complain given what other people out there are dealing with!!
I should have mentioned that the dip in calpro correlated with a dip in CRPs. I was just surprised that Entyvio would work and then not work like that, so it's interesting to hear that it might have. I wondered all the time whether the improvement at first was just coincidental, since the disease ebbs and flows on its own.
I'm trying to brace myself for disappointment with the Skyrizi. The colonoscopy after every medication we've tried has left me depressed, so my expectations have gotten low. No signs that the Skyrizi is helping yet, but it has only been two weeks, so it's too soon. It's good to hear the GIs out there like it.
 
My calprotectin also dropped on entyvio then bounced back up and stayed high despite going to every 4 weeks. I don’t know, maybe it’s a drug that only works very briefly for some, or in a way that the immune system can quickly figure out a work around
 
To keep a point of reference, recent calprotectin ressult is 101… blood results are also all normal. Some high end of the normal band, but normal. I feel cautiously optimistic :)
We are scheduled to the LIFT surgery for his fistula next week. Keep us in mind please.
 
Terrific news about the calpro. And definitely keeping you guys in mind for the surgery - here's for a full and speedy recovery.
 

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