Stelara is working

[Pangolin]

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.

 

[Scipio]

Excellent. How long was he on Stelara before the slight improvements in symptoms and big drop in FCP?

 

[Pangolin]

Excellent. How long was he on Stelara before the slight improvments in symptoms and big drop in FCP?

Almost immediate. 2-4 weeks for both changes, and the FCP drop continued and improved so far to 7 weeks.

 

[Scipio]

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.

 

[Pangolin]

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]

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.

 

[Pangolin]

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]

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

 

[Pangolin]

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]

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.

 

[Pangolin]

Oh, sorry Maya, I was thinking of @crohnsinct's daughter O

 

[Pangolin]

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]

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?

 

[Pangolin]

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]

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.

 

[Pangolin]

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).

 

[Pangolin]

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.

 

[Pangolin]

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.

 

[Pangolin]

Alright it's time for an update.

My son has been on Stelara for a bit over a year now. He was also on EEN for a long time, and we have slowly been tapering the formula and adding more food. Currently his diet is mostly ordinary food of his choice, avoiding certain things that were more of a problem like fried foods and processed meats. He still has a few bottles of semi-elemental formula each day.

He's also been getting growth hormone shots for the last year. Those started a month before the Stelara. We did not notice that the growth hormone had any immediate effect on the Crohn's, but it's possible that it has helped over time.

Anyway, the latest test results:

ESR: 1
Fecal calprotectin: normal (under 50)
MRE: normal, no sign of inflammation

So, things are going great.

 

[Stressedmom]

Alright it's time for an update.

My son has been on Stelara for a bit over a year now. He was also on EEN for a long time, and we have slowly been tapering the formula and adding more food. Currently his diet is mostly ordinary food of his choice, avoiding certain things that were more of a problem like fried foods and processed meats. He still has a few bottles of semi-elemental formula each day.

He's also been getting growth hormone shots for the last year. Those started a month before the Stelara. We did not notice that the growth hormone had any immediate effect on the Crohn's, but it's possible that it has helped over time.

Anyway, the latest test results:

ESR: 1
Fecal calprotectin: normal (under 50)
MRE: normal, no sign of inflammation

So, things are going great.

That's wonderful news!!! Great work doing whatever needed to be done to help him!

 

[pdx]

Glad to hear this!

 

[crohnsinct]

We love to hear success stories! Great news! So his calpro has been normal for almost 8 months?! Take that Crohn's!

 

[Pangolin]

Yes that's right, normal FCP for a long time.

For anyone just reading this, here's what worked/helped:

EEN as necessary to keep things mostly under control while everything was figured out. EEN was not sufficient by itself in his case, but food at the wrong times would have put him into the hospital.

Surgery to remove the very inflamed area at the terminal ileum. Biologics were not very effective before the surgery. The area may have been beyond repair from the time of diagnosis, and probably nothing would have worked until surgery was done first.

Antibiotics, sometimes. Not a main treatment, but helpful when there was more pain.

Stelara, which finally got rid of remaining inflammation after surgery.

 

[my little penguin]

Glad to hear Stelara is working
Long may it continue
Ds has been on it since 2017

 

[Maya142]

Wonderful to hear it is working and he can eat!!! I'm glad he found the right drug for him!

 

[Pangolin]

It's been a long time so I thought I'd provide another update:

No signs of inflammation on any test (blood work, fecal calprotectin, mri, colonoscopy) for over 2 years.

No Crohn's symptoms for months. Early this year there was still some occasional abdominal pain, but that tapered away. Stelara resulted in not only immediate improvement, but also continuing improvement between years 1 and 2. He's also been on growth hormone at the same time, so it's possible that has also had some effect.

Basically no side effects.

Essentially normal diet. We still encourage him to have some Pediasure and to avoid fried foods and cured meats, but he can handle all the normal foods now.

He had a severe case that could easily have never been brought under control. I've seen reports of others going from one treatment to the next but always at best being in a state of barely controlled disease. So, I'm very thankful that we've managed to not only keep things from spiraling out of control, but also really get him healthy.

Recovery is a long process that continues even after inflammation is gone--with a kid who's been sick his whole life it's hard to tell what healthy really is for him--but things are looking really good now.

 

[Stressedmom]

Thanks for sharing the good news! That is wonderful!

 

[asadmom]

It's been a long time so I thought I'd provide another update:

No signs of inflammation on any test (blood work, fecal calprotectin, mri, colonoscopy) for over 2 years.

No Crohn's symptoms for months. Early this year there was still some occasional abdominal pain, but that tapered away. Stelara resulted in not only immediate improvement, but also continuing improvement between years 1 and 2. He's also been on growth hormone at the same time, so it's possible that has also had some effect.

Basically no side effects.

Essentially normal diet. We still encourage him to have some Pediasure and to avoid fried foods and cured meats, but he can handle all the normal foods now.

He had a severe case that could easily have never been brought under control. I've seen reports of others going from one treatment to the next but always at best being in a state of barely controlled disease. So, I'm very thankful that we've managed to not only keep things from spiraling out of control, but also really get him healthy.

Recovery is a long process that continues even after inflammation is gone--with a kid who's been sick his whole life it's hard to tell what healthy really is for him--but things are looking really good now.

You have put in an incredible amount of work to fight for his care as well. You are one of the rare, rare cases where you knew and recognized that doctors do not know everything and instead of going along to get along, you literally fought for your son and landed him in a sustaining recovery. You also directly influenced how I managed my son's care and my son is doing so much better because of your guidance along the way. I'd say, in your case, yes, Stelara helped but you are a super dad and the real hero.

I pray for your son's remission to last and last...

 

[Pangolin]

Thanks for your kind words, @asadmom

 

[Crohn2357]

Is he still doing good? I wonder, can’t he be on total EEN for a long time (years), if it helps him with inflammation and nourishes his body?

 

[Pangolin]

Yes, he's still doing well. EEN was not as effective as Stelara in his case, and obviously it's a huge lifestyle impairment.

 

[Crohn2357]

Yes, he's still doing well.

Glad to learn he’s still doing well. I hope he continues like this forever.

obviously it's a huge lifestyle impairment

I don’t know what product your child used, but I actually quite liked the taste of modulen, and see it the other way around. You make it ready the day before, and you have the whole day’s meal ready in liquid. Tastes good, energizes, helps with the inflammation. Whenever you feel hungry, you can drink it if you carry it with you in big thermoses.

The practical downsides that I can think of are that 1) you may miss eating, chewing solid food, and 2) may miss eating a variety of foods and drinks, 3) It distances you from the social aspect of eating and drinking, to a degree. 4) not eating solid foods for a long time may have detrimental effects on oral, dental and digestive health.

If it doesn’t help much, then I wouldn’t choose EEN either, as that was the case for me (I was an adult when I tried it). But if it actually lowers inflammation and provides a much needed nourishment, especially for a growing boy, I think the downsides can be overlooked.

 

[my little penguin]

@Crohn2357
Een is extremely difficult for kids and teens .
It is not the same for an adult .
Kids with crohns are not the same as adults with crohns

The psychological aspects are tough .
Add in it does have side effects on growing kids when used long term.
SIBO tends to happen
Teeth tend to go rotten despite brushing since you have large amounts of sticky liquid with a ton of sugar in it and no solids.
Diabetes is a risk due to sugar from the drinks .

my point nothing is without risks .
Parents here do the best they can with the information available at the time and balancing treatments with a normal life for their children

partial een -supplemental formula whether that is pediasure /boost /carnation instant breakfast etc…
When given 2-3 times a day with a normal kid diet can and does help tremendously with growth through the kid /teen years when combined with the right meds .

mine was 7 at dx and now 20
Did full een due to severe flares multiple times -each time was harder for him with supplemental een (peptamen jr /neocate jr and now carnation instant breakfast) in between .
He has been in stelara / methotrexate for more than 6 years now.
That combo for him allowed his inflammation to be nonexistent and to grow like crazy (6 ft talk now )

Every child is different and what works for one may not work for another .

 

[Crohn2357]

@Crohn2357
Een is extremely difficult for kids and teens .
It is not the same for an adult .
Kids with crohns are not the same as adults with crohns

The psychological aspects are tough .
Add in it does have side effects on growing kids when used long term.
SIBO tends to happen
Teeth tend to go rotten despite brushing since you have large amounts of sticky liquid with a ton of sugar in it and no solids.
Diabetes is a risk due to sugar from the drinks .

my point nothing is without risks .
Parents here do the best they can with the information available at the time and balancing treatments with a normal life for their children

partial een -supplemental formula whether that is pediasure /boost /carnation instant breakfast etc…
When given 2-3 times a day with a normal kid diet can and does help tremendously with growth through the kid /teen years when combined with the right meds .

mine was 7 at dx and now 20
Did full een due to severe flares multiple times -each time was harder for him with supplemental een (peptamen jr /neocate jr and now carnation instant breakfast) in between .
He has been in stelara / methotrexate for more than 6 years now.
That combo for him allowed his inflammation to be nonexistent and to grow like crazy (6 ft talk now )

Every child is different and what works for one may not work for another .

I started stelara a few months ago. I have also been using 6MP for years. Doesn’t MTX make him feel bad? It lowered my appetite, especially for red meat and animal fat; which was unusual for me. It also made me feel bad in general. I used injections, and folic acid the day after. Its effects made me research it from a neurotoxicity standpoint, found out it’s quite neurotoxic, readily crosses BBB. Oral doses are less toxic because of significantly lower absorption. It works great for arthritis though. Does your son use stelara every 4 weeks or every 8 weeks?

When did stelara start to work, and make him achieve remission?

 

[my little penguin]

My son uses the methotrexate (oral ) plus Stelara every 4 weeks for juvenile arthritis and crohns.
He did not tolerate the injection version.
He takes folic acid every day including the day he does mtx .
He also is split doses -takes half the dose then 12 hours later takes the other half.

as far as red meat -his Gi is adamant-no red meat since that increases colon cancer risk which crohns already does .

stelara took over 8 months to work .
He was on shots every 8 weeks but switched after 8 months to every 4 weeks .

he tried spacing to every 6 weeks but flares in Gi tract and joints .

6-mp was tried for a few months along time ago .every time he got to therapeutic levels his liver enzymes would go through the roof.
We even tried another med with it to shunt it away from the liver -no luck

add in pediatric Gi will no longer prescribe 6-mp/aza etc in combination with any biologics due to the higher risk of fatal T-cell lymphoma in young males
Mtx does not carry the same risk

 

[Crohn2357]

My son uses the methotrexate (oral ) plus Stelara every 4 weeks for juvenile arthritis and crohns.
He did not tolerate the injection version.
He takes folic acid every day including the day he does mtx .
He also is split doses -takes half the dose then 12 hours later takes the other half.

as far as red meat -his Gi is adamant-no red meat since that increases colon cancer risk which crohns already does .

stelara took over 8 months to work .
He was on shots every 8 weeks but switched after 8 months to every 4 weeks .

he tried spacing to every 6 weeks but flares in Gi tract and joints .

6-mp was tried for a few months along time ago .every time he got to therapeutic levels his liver enzymes would go through the roof.
We even tried another med with it to shunt it away from the liver -no luck

add in pediatric Gi will no longer prescribe 6-mp/aza etc in combination with any biologics due to the higher risk of fatal T-cell lymphoma in young males
Mtx does not carry the same risk

I would continue with this conversation, but I don’t want to use Pangolin’s thread for it. I have some disagreements that I won’t delve into. Just a note: if you haven’t already, get him tested for MTHFR mutations. If it comes out homozygous positive, consider giving him methylfolate instead of folic acid.

Giving folic acid even on the day of taking the mtx may also be counterproductive for the drug’s effectiveness.

 

[Pangolin]

I'm actually a big proponent of EEN. EEN is exactly what many people need in many situations. However, it's not always the best option, and after some time and experimenting we eventually came to a better solution, at least for now.