Hello I am a 17 year old Chrons patient and I was diagnosed back in 2020. Since then I have tried humira, remicade, and am currently on stelara 90mg every 4 weeks. Reason being for the 4 weeks as opposed to the normal 8 is that when I started the medicine I was showing very low levels. For the past few months things have been very rough. Initially around 7 weeks ago I was having very bad symptoms, a couple er visits, a visit with my pediatrician, and finnaly one with my gastroenterologist we chalked it off as a stomach flu as bloodwork showed good levels and little inflammation. 2 weeks later it begins again and my gastroenterologist thinks it was probably just a flare. Now recently I’m having symptoms again but labs I took only 3 weeks ago showed that I had a stelara level of 9.4 which is really good. When these “attacks” would come my gastroenterologist would put me on prednisone for a little which I believe is the only think that kept me symptomless between these attacks. As soon as I was fully weaned off it would begin again. What do you guys think might be going on? My doctor has spoke with me about the possibility of switching to entyvio but from what I heard it’s a very unreliable option but there’s no other medicines to try. I’m pretty big on fitness I like to weightlift around 5 times a week but these attacks have made it just impossible as I’ve dropped a good 10 pounds. Please help.
High stelara levels but feel worse then ever
- Thread starter blazezinn
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Your case sounds like a difficult one. I think you're going to need something else in addition to any biologics. Chances are pretty low that Entyvio alone will do any better than the other biologics you've been on.
You probably already know that taking prednisone for long is not so good. An alternative is EEN (exclusive enteral nutrition), which is an all-formula diet. It's not easy, but for most people it brings down inflammation fast. Semi-elemental formulas can be prescribed that work better than the stuff you can buy at the store.
You may need an MRI and/or colonoscopy to see where the inflammation is and how it looks currently. Surgery to remove very inflamed or strictured parts is an option, and often people find that the biologics work much better after surgery.
Sometimes patients are prescribed drugs such as azathioprine or methotrexate to go along with a biologic, although this is not very common with Stelara.
In rare cases, sometimes gut rest and TPN are used, or double biologics.
I think antibiotics can help at the margins. Metronidazole is occasionally used, and others can sometimes help a little.
My son had to get a combination of surgery, use EEN for a long time, and use Stelara to get the inflammation under control.
You probably already know that taking prednisone for long is not so good. An alternative is EEN (exclusive enteral nutrition), which is an all-formula diet. It's not easy, but for most people it brings down inflammation fast. Semi-elemental formulas can be prescribed that work better than the stuff you can buy at the store.
You may need an MRI and/or colonoscopy to see where the inflammation is and how it looks currently. Surgery to remove very inflamed or strictured parts is an option, and often people find that the biologics work much better after surgery.
Sometimes patients are prescribed drugs such as azathioprine or methotrexate to go along with a biologic, although this is not very common with Stelara.
In rare cases, sometimes gut rest and TPN are used, or double biologics.
I think antibiotics can help at the margins. Metronidazole is occasionally used, and others can sometimes help a little.
My son had to get a combination of surgery, use EEN for a long time, and use Stelara to get the inflammation under control.
I see. I did forget to mention that I’m taking mesalamine and methotrexate currently alongside the Stelara. I’ve also taken a colonoscopy in the past and the main takeaway was that most of my inflammation was in my lower intestine. I’ll have to talk with my GI about the possibilities of surgery.
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You should definetly look into diets like CDED and SCD and IBD-AID and starting to do a food journal and monitor symptoms - all of this of course should ideally be supported by continued monitoring tests and a dietatian. I had great results with diet changes personally and I know quite a few others too. I personally did not yet need medication since doing the diet changes, but I heard that it supplements them quite nicely and increases the success rate. EEN is also an option as Pangolin mentioned above. I would definetly give these a fair try before a surgery becomes necessary, as you have been through a lot of biologics and immunosuppressants already.
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Going to tag a few moms
@crohnsinct
@Maya142
@pdx
@Pilgrim
my kiddo is 19
Was dx at 7 and has been on Stelara plus mtx for almost 6 years .
een is a good bridge as well as scd or cced diets to try and help things out
to know what is going on you would need imaging (MRE )/ scopes and fecal caloprotectin (stool tests )
Depending on where your crohns is located
Stelara is a better option for some types of crohns locations
Entyvio is better for other types of locations
there are also JAK inhibitors
And cases studies which use things like Ilaris
Second opinions are good to get for folks who are complicated
It’s like a fresh set of eyes might see something
CHOP (childrens of Philadelphia) does a team approach and is good for second opinions
Boston childrens as well
we have taken my kiddo to both places as well as Cincinnati childrens over the past 12 years
good luck
@crohnsinct
@Maya142
@pdx
@Pilgrim
my kiddo is 19
Was dx at 7 and has been on Stelara plus mtx for almost 6 years .
een is a good bridge as well as scd or cced diets to try and help things out
to know what is going on you would need imaging (MRE )/ scopes and fecal caloprotectin (stool tests )
Depending on where your crohns is located
Stelara is a better option for some types of crohns locations
Entyvio is better for other types of locations
there are also JAK inhibitors
And cases studies which use things like Ilaris
Second opinions are good to get for folks who are complicated
It’s like a fresh set of eyes might see something
CHOP (childrens of Philadelphia) does a team approach and is good for second opinions
Boston childrens as well
we have taken my kiddo to both places as well as Cincinnati childrens over the past 12 years
good luck
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- Apr 15, 2012
- Messages
- 14,792
Also Stelara can take up to 8 months to work
How long have you been at every 4 weeks ?
it took my kiddo 8 to 9 months and we were ready to give up on the med
How long have you been at every 4 weeks ?
it took my kiddo 8 to 9 months and we were ready to give up on the med
I'm a bit foggy as the switch to 4 weeks was a long process with insurance but I would say that I'm very close if not already at 8 months.
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- Jul 2, 2013
- Messages
- 6,750
I agree that getting a second opinion is a great idea. If you live on the east coast, CHOP has an excellent IBD center.
EEN is an option - it can be used to induce remission. It’s hard to do, but it does work very well. Some GI’s allow some food in addition to formula to make it easier to do (for example, 90% of your diet would be formula and 10% food, allowing you to have a small meal or several small snacks in the day). Some kids drink shakes and others use feeding tubes. My daughter tried both but was unable to drink enough formula to even maintain her weight, much less gain weight. So eventually she switched to an NG tube that she inserted every night and removed every morning before school, so no one at school had to know. She did feeds overnight. Once she realized how easy the feeding tube was, she declared she’d never drink formula again! EEN is hard but it really can work and sometimes gives a drug the “boost” it needs.
Other options would be trying a JAK inhibitor like Rinvoq or Xeljanz. They’re oral medications that work well for Crohn’s and UC. They also work quickly - some patients feel better within days and others take weeks, but they typically do not take months and months like Stelara or Entyvio. They do work for colonic disease AND small bowel disease. Stelara, on the other hand, typically works better for small bowel disease and if most your inflammation is in your colon then that may be why it isn’t controlling your Crohn’s.
If your inflammation was in your small bowel, then Skyrizi would be an option - it’s a new IL-23 inhibitor, so it’s similar to Stelara but I have heard it works better. It may also work for colonic Crohn’s - that’s something to ask your doctors about. And of course, Entyvio is an option and does work well for some kids with colonic disease. Unfortunately, it is trial and error.
But I would also make sure there is active inflammation before you consider switching medications. You said your Stelara levels and blood work looked good, so that’s good. But has your fecal calprotectin been checked recently? You need to make sure these “attacks” are truly from Crohn’s and are not due to something else (infection, food intolerance, celiac disease, IBS etc). Honestly, that would be my first step before doing anything else at all - checking your fecal calprotectin to see how much inflammation there is in your gut and even possibly doing scopes or an MRE to see if the Stelara has caused any healing and whether there is still inflammation and where it is. Because that will determine future treatment.
EEN is an option - it can be used to induce remission. It’s hard to do, but it does work very well. Some GI’s allow some food in addition to formula to make it easier to do (for example, 90% of your diet would be formula and 10% food, allowing you to have a small meal or several small snacks in the day). Some kids drink shakes and others use feeding tubes. My daughter tried both but was unable to drink enough formula to even maintain her weight, much less gain weight. So eventually she switched to an NG tube that she inserted every night and removed every morning before school, so no one at school had to know. She did feeds overnight. Once she realized how easy the feeding tube was, she declared she’d never drink formula again! EEN is hard but it really can work and sometimes gives a drug the “boost” it needs.
Other options would be trying a JAK inhibitor like Rinvoq or Xeljanz. They’re oral medications that work well for Crohn’s and UC. They also work quickly - some patients feel better within days and others take weeks, but they typically do not take months and months like Stelara or Entyvio. They do work for colonic disease AND small bowel disease. Stelara, on the other hand, typically works better for small bowel disease and if most your inflammation is in your colon then that may be why it isn’t controlling your Crohn’s.
If your inflammation was in your small bowel, then Skyrizi would be an option - it’s a new IL-23 inhibitor, so it’s similar to Stelara but I have heard it works better. It may also work for colonic Crohn’s - that’s something to ask your doctors about. And of course, Entyvio is an option and does work well for some kids with colonic disease. Unfortunately, it is trial and error.
But I would also make sure there is active inflammation before you consider switching medications. You said your Stelara levels and blood work looked good, so that’s good. But has your fecal calprotectin been checked recently? You need to make sure these “attacks” are truly from Crohn’s and are not due to something else (infection, food intolerance, celiac disease, IBS etc). Honestly, that would be my first step before doing anything else at all - checking your fecal calprotectin to see how much inflammation there is in your gut and even possibly doing scopes or an MRE to see if the Stelara has caused any healing and whether there is still inflammation and where it is. Because that will determine future treatment.
