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Stelara is working

Just a little update on my son's case. He's 13, and he had surgery last year to remove a stricture at the terminal ileum. Prior to that he was on Remicade and then Entyvio as well as long-term EEN. Nothing we tried worked enough to allow him to go off the EEN, and none of this was able to get rid of the stricture, so he ended up needing the surgery.

After the surgery things were going ok for a while on EEN, and then things went south when we tried food again. So it was back to EEN--this time with a semi-elemental formula. That helped, but it wasn't enough, so he started Stelara.

We've been continuing the semi-elemental EEN even with the Stelara, and the plan is to start introducing foods again once we're sure the inflammation is really gone for long enough. He's just had his second dose of Stelara at this point.

Symptoms were already low, but so far we've noticed some slight improvement due to the Stelara. However, the main change is a huge drop in fecal calprotectin. For the first time ever, his fecal calprotectin reading is now below 50 (normal). Stelara has had no obvious side effects yet.
 
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Location
San Diego
Excellent. How long was he on Stelara before the slight improvements in symptoms and big drop in FCP?
 
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Location
San Diego
Almost immediate. 2-4 weeks for both changes, and the FCP drop continued and improved so far to 7 weeks.
That's good to know. The standard story on Stelara is that it takes a long time to kick in - two months or more. But when I first started on Stelara I thought I saw noticeable improvement in symptoms almost immediately too - in two weeks. Glad to see it confirmed that I wasn't the only one to show quick improvement.
 
I think it helps that the situation prior to Stelara wasn't a total disaster since the EEN was keeping things mostly under control. Stelara seems to have provided the needed boost to hopefully truly get to remission, at which point maybe we can back off on the EEN.
 

Maya142

Moderator
Staff member
That's absolutely wonderful!! I hope he can start food once he's been on Stelara for a while!! Just out of curiosity, did his Fecal Calprotectin go down on Entyvio or Remicade?
I'm so glad it has worked quickly for him - we were told at least 3-6 months with Stelara. My daughter may need a med change soon and Stelara is the only biologic that's approved for Crohn's that she hasn't tried - she's been on Remicade multiple times, Humira multiple times, Entyvio and Cimzia.
 
Maya, the really tricky thing for your daughter is going to be how the switch is done, if she goes to Stelara at some point. I know she's on so much already right now, and I know that these medicines can have some nasty rebound effects that are not necessarily avoidable. I'm really concerned about all the things she's on right now. In my son's case, he felt very bad for a couple of weeks upon stopping both Remicade and Entyvio--not because of a flare, but because going off those medicines produced a pronounced withdrawal syndrome. That's going to be a very difficult situation to manage.

Anyway, Remicade did lower calprotectin, but it was never below 250 on Remicade. Entyvio seemed to have little effect on calprotectin but I think it may have been helping a little bit despite that.
 

my little penguin

Moderator
Staff member
Hmm five biologics over 10 years here used over the years and never had any withdrawal symptoms from switching biologic meds
Withdrawal symptoms from prednisone/steriods
If weaned too fast
But never biologics
But I will add Ds was always on bridge therapy during the switch .

glad Stelara is working well for him
Ds has been on it 4 years so far without any issues
 
Some comments on other treatments:

I think before the very inflamed stricture was removed, it's likely that nothing was ever going to work. So, Remicade may have done some good, but it was fighting a losing battle against a problem that was just too extreme. EEN kept things from spiraling out of control while we figured this out, but I think semi-elemental EEN would have worked significantly better the whole time. The situation was basically the same on Entyvio--it might have helped a little bit, but any positive signal was overwhelmed by the difficulty of the problem.

Under the current circumstances with semi-elemental EEN and with the stricture gone, there's a good chance that Entyvio or Remicade might actually be working, too. However, Remicade in particular caused a lot of side effects. My overall opinion is pretty negative on Remicade but somewhat positive about Entyvio.

Antibiotics have also helped at times, but they seem to only help for a short time. They're worth a try.
 

Maya142

Moderator
Staff member
She has no choice - we can't risk more joint destruction and anti-TNFs do not control her arthritis. She had joints replaced at 22!

We made the decision to treat her aggressively when she was diagnosed with Crohn's - two severe diseases would be exponentially harder to handle. This has thankfully kept her Crohn's relatively mild. Believe me, we wanted to minimize meds when she was diagnosed with arthritis. And so we waited to start biologics and in the interim, she developed permanent joint damage. Permanent damage equals permanent pain. She was later under-treated by a rheumatologist, and that led to even more joint damage and very hard to control disease.

She sees researchers all over the country, including at NIH - all have said she has unusually severe inflammation in her joints which is very hard to control. Her rheumatologist consults the researchers she sees before making treatment decisions.

Incidentally, she was on EEN for 4 months last summer/fall and her CRP remained very high - it didn't go down at all.

I'm not sure what you mean by "rebound" symptoms - that's not a term I've ever heard a doctor/researcher use.
 
As for the withdrawal syndrome (or rebound effect or whatever we want to call it), it was mainly nausea and lower esophageal pain after both Remicade and Entyvio, with the addition of a week of fever after Remicade. Very similar both times, and also very distinct from his Crohn’s symptoms.
 

crohnsinct

Well-known member
Great news. I really hope it is the Stelara pushing him over and that the reintroduction of food goes well.

Thanks @Pangolin for always thinking of us. They are treading very lightly with O's treatment. They don't want to abandon Humira too soon as it and Entyvio and the antibiotics and the Uceris now sulfasalazine are keeping her out of the hospital. If they withdraw Humira and Stelara takes too long to kick in or worse doesn't work (which her GI is emphatic that it likely won't work) then chances are she can't go back to Humira and we are screwed.

The GI and surgeon's thoughts are similar to what you did. They feel if we remove the colon (the real trouble spot) then our chances at reducing meds is higher as her TI disease isn't as severe. They are also hoping the diversion will help whatever rectum they are able to keep heal. Then maybe a reconnect is possible. However, given the severity of her disease and the fact that her latest round of steroids didn't help much they are thinking a total proctocolectomy is more the way to go with a permanent ileostomy.

I am researching alternative modalities now.

When they removed the stricture were they able to tell you if it was scar tissue or inflammatory?
 
Yikes, the problem there is that's so much worse than just one trouble spot of a few inches at the end of the small intestine. A small resection is already a pretty big deal, and that's so much more. I understand her not wanting that.

I did ask if it was scarred or inflamed, and the answer wasn't totally clear but it sounded more inflamed than scarred.

(It's also possible that in my son's case the stricture could have been dealt with if we'd just found the right combination like we're doing now, but probably it just had to come out.)
 

Maya142

Moderator
Staff member
In my son's case, he felt very bad for a couple of weeks upon stopping both Remicade and Entyvio--not because of a flare, but because going off those medicines produced a pronounced withdrawal syndrome.
My kiddo has been on 9 biologics now and has never had any sort of withdrawal symptoms. She's had increased arthritis or Crohn's symptoms before the new biologic has kicked in - that is normal, because these drugs do not work instantly. She has low grade fevers whenever her arthritis isn't well controlled - that includes when she's starting a new biologic that has not kicked in, or if she's failing a biologic that she's been on for years.

My guess is that the "withdrawal" symptoms you speak of are due to inflammation that returns or increases when a drug that has been working (even partially) is stopped, and a new drug is started - for example, inflammation in the stomach or esophagus could cause those symptoms.

Remicade does not work for every kid, but if it reduced your son's FCP, it was clearly doing something. As you said, perhaps it wasn't the best drug for him - it looks like Stelara is working better for him, given that his FCP is totally normal! Every kid is an individual and they all respond to different drugs and different combinations of drugs. Incidentally, my daughter's Crohn's responded very well to Remicade - scopes were mostly clean after 9 months on Remicade and MTX.

I'm glad to hear he is feeling better - hopefully he'll continue to improve.
 
Yes, perhaps the withdrawal was an inflammation spike in a totally new area that went away as the body readjusted to not having the medicines. That's one kind of withdrawal/rebound effect. Maybe you can deal with it by overlapping drugs as you shift from one to another, but this kind of drug dependence in which you have a period of time when paradoxical effects dominate is not necessarily an easy problem. Fortunately we've finally managed to escape that trap now and find a drug in which the paradoxical portion doesn't dominate (fingers crossed).
 
Update after 3 more months: everything is about the same. Sed rate was 2 at the most recent test (it's never been truly normal before). Calprotectin was 60 a while back, and we just turned in another test. Hopefully it's back under 50. Mild brief abdominal pain about once a day, and we're continuing to be extremely careful about food. Overall very stable situation, hopefully continuing to improve.
 
Calprotectin is back down below 50, yay. (The result doesn’t give a more specific number.)

I really feel like we've finally gotten this truly under control, and now we can start testing foods more. It took surgery to remove about a 4 cm stricture, long-term semi-elemental EEN, and Stelara to get to this point. Antibiotics also helped occasionally, but he's not currently on any. Remicade and Entyvio each failed to produce adequate results at the time.

We had to do a lot of experimentation to figure this out. Having some feedback to be able to tell whether something is working or not is so critical.
 
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