I have twin sons with colonic Crohn's. When they were first diagnosed, we were given the choice of Stelara, Entyvio, or Remicade/Humira. One of my sons already moved on from Stelara to Entyvio, and after 10 weeks, we aren't seeing signs that the Entyvio is really working. I've heard very mixed stories about how long it takes for Entyvio to work, but the doctor is getting impatient, and I'm getting worried. When I look at Remicade's own site, it says it works for 4/10 people but that a placebo works for 3/10. So I'm wondering, what do we do if and when none of the biologics work?
when biologics don't work
- Thread starter momsa
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Stelara takes a long time to work
Entyvio 10 weeks really isn’t any time at all
12 months is entyvio average
Burning through biologics quickly limits what drugs you have in the future to use
My kiddo has been dx for 11 years
Biologics for 10 years abd used 3 separate biologics (remicade /humira and Stelara)
But now - no real biologics left for him if Stelara fails in the future
(Entyvio is not an option due to juvenile arthritis)
most use bridge therapy until the meds kick in especially the ones that are known to take longer
Steriods and exclusive enteral nutrition
Is your child/adult doing these as bridge ?
Even simple meds like methotrexate take at least 12 weeks .
have you added methotrexate to the entyvio or Stelara?
Dosing ? Every 4 weeks for Stelara
Higher dosing for entyvio (300 mg ) every 4 weeks ?
most use remicade first
Humira second
Stelara or entyvio third simply because they take so much longer to work and don’t work for the entire Gi tract
Stelara focuses on the small intestine
Entyvio on the large intestine
in addition those who failed remicade /humira tend to switch to those Stelara:entyvio since the immune system pathway is very different so response rate is different.
Entyvio 10 weeks really isn’t any time at all
12 months is entyvio average
Burning through biologics quickly limits what drugs you have in the future to use
My kiddo has been dx for 11 years
Biologics for 10 years abd used 3 separate biologics (remicade /humira and Stelara)
But now - no real biologics left for him if Stelara fails in the future
(Entyvio is not an option due to juvenile arthritis)
most use bridge therapy until the meds kick in especially the ones that are known to take longer
Steriods and exclusive enteral nutrition
Is your child/adult doing these as bridge ?
Even simple meds like methotrexate take at least 12 weeks .
have you added methotrexate to the entyvio or Stelara?
Dosing ? Every 4 weeks for Stelara
Higher dosing for entyvio (300 mg ) every 4 weeks ?
most use remicade first
Humira second
Stelara or entyvio third simply because they take so much longer to work and don’t work for the entire Gi tract
Stelara focuses on the small intestine
Entyvio on the large intestine
in addition those who failed remicade /humira tend to switch to those Stelara:entyvio since the immune system pathway is very different so response rate is different.
We used Prednisone tapering to Uceris as a bridge.
My sons' Crohn's is exclusively in their colons. No small intestine involvement. Though we didn't know that when we first picked Stelara.
My son who switched to Entyvio was on Stelara for 10 months - about half of that time was every 4 weeks. No improvement.
I realize we've gone in an unusual order with the biologics. Nonetheless, I still don't understand what we do if and when none of them work.
My sons' Crohn's is exclusively in their colons. No small intestine involvement. Though we didn't know that when we first picked Stelara.
My son who switched to Entyvio was on Stelara for 10 months - about half of that time was every 4 weeks. No improvement.
I realize we've gone in an unusual order with the biologics. Nonetheless, I still don't understand what we do if and when none of them work.
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You have to give entyvio time to work (up the dose ) and add ons are needed before declaring a fail
So adding methotrexate
Add steriods
Abd adding exclusive enteral nutrition while on entyvio or Stelara
Also increasing dose
Then you see what that does
Genetic testing for immunodeficiency /crohns
Majority have success with remicade
so no need to think those staples of remicade or humira won’t work
there is still
Simponi aria
Cimiza
Rinvoc (in phase IIi trials crohns )
Tremfya (trials for crohns )
Plus one or two more in the pipeline for trials
then you have through things at the wall and see if they stick drugs
Ilaris
Ivig
I am sure there are more
also if the inflammation burden is so high meds won’t cut it down
Then surgery to remove all of the colon (ostomy )
Then try meds to keep it from spreading to small intestine since crohns moves over the first 10 years .
reminder the first two years are really just a matter of taking time to find what works for your kiddos
It’s a bumpy ride
Never an easy thing
It took my kiddo longer to find the right combo of meds
Many many years (6 years from dx ) but he had juvenile arthritis dx later as well as auto inflammatory condition
Those two extra diseases caused us to blame things on crohns that were not crohns
So getting two biologics plus methotrexate was the answer for him (been very good for 5 years now )
There are options
Your at the beginning of a long journey
You will find the right fix
But you have to be patient
(Much easier said once your on the other side )
So adding methotrexate
Add steriods
Abd adding exclusive enteral nutrition while on entyvio or Stelara
Also increasing dose
Then you see what that does
Genetic testing for immunodeficiency /crohns
Majority have success with remicade
so no need to think those staples of remicade or humira won’t work
there is still
Simponi aria
Cimiza
Rinvoc (in phase IIi trials crohns )
Tremfya (trials for crohns )
Plus one or two more in the pipeline for trials
then you have through things at the wall and see if they stick drugs
Ilaris
Ivig
I am sure there are more
also if the inflammation burden is so high meds won’t cut it down
Then surgery to remove all of the colon (ostomy )
Then try meds to keep it from spreading to small intestine since crohns moves over the first 10 years .
reminder the first two years are really just a matter of taking time to find what works for your kiddos
It’s a bumpy ride
Never an easy thing
It took my kiddo longer to find the right combo of meds
Many many years (6 years from dx ) but he had juvenile arthritis dx later as well as auto inflammatory condition
Those two extra diseases caused us to blame things on crohns that were not crohns
So getting two biologics plus methotrexate was the answer for him (been very good for 5 years now )
There are options
Your at the beginning of a long journey
You will find the right fix
But you have to be patient
(Much easier said once your on the other side )
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I'm going to tag @crohnsinct since her daughter has very refractory Crohn's, which started off only in her colon.
There are a lot of options. Honestly, my daughter's GIs - both pediatric and adult - told us that they have had better results with Remicade and Humira than with Stelara and Entyvio for Crohn's. My daughter's pediatric GI said Entyvio (in her experience) was a "weaker" biologic and it also was a slow acting biologic. My daughter was on it (briefly) and she said to give it 6 months to work. In contrast, Remicade and Humira work much faster, and with especially with Remicade, you have a lot more flexibility with the dosing and the frequency. You could start at 5 mg/kg every 8 weeks and increase it to as often as every 4 weeks. And the dose can vary from 5 mg/kg - 10 mg/kg, though sometimes doctors will go higher - my daughter went up to 20 mg/kg every 4 weeks.
Typically Remicade is the biologic used first for severe Crohn's, though of course you can certainly start with Stelara or Humira or Entyvio. Plus, you can also add an immunomodulator like Methotrexate to give any of the biologics "a boost," though it's done most often with Remicade and Humira.
Besides those biologics, Cimzia and Simponi are other anti-TNFs used for IBD. Xeljanz and Rinvoq are a JAK inhibitors approved for UC, and Rinvoq is doing very well in Crohn's studies too. My daughter has been on it (it was prescribed for her psoriatic arthritis which is how we got it approved). JAK inhibitors are pills which is a plus for some - I know you mentioned one of your sons had issues with injecting himself.
There are also other drugs in trials - similar to Stelara, Tremfya and Skyrizi are IL-23 inhibitors (Stelara is an IL-23 and IL12 inhibitor, so it's a bit different). Skyrizi has been filed for approval and Tremfya is still in trials for both UC and Crohn's.
There are also trials using two biologics together - such as Remicade and Entyvio for example. My daughter has severe inflammatory arthritis so she has been on two biologics for years now (almost 5 years) - in her case, one for the Crohn's and one for the arthritis. But GIs do occasionally use two biologics just for Crohn's - again, @crohnsinct's daughter was on Entyvio and Humira for a while. There are more studies being done on dual biologics now.
There are also other drugs used occasionally - stronger immunosuppressants like Tacrolimus. And there are plenty still in early trials.
Surgery is also an option. TPN or EEN are options to help a biologic kick in, as are steroids.
I honestly would not worry about your child not responding to any biologic at all. I've been on this forum for a long time (well, the parents' forum) - 9 years or so. And very few kids didn't respond to anything. I wouldn't worry if it's only been 10 weeks with Entyvio - you may need to wait longer or he may need infusions more frequently before you can say it isn't working at all.
There are a lot of options. Honestly, my daughter's GIs - both pediatric and adult - told us that they have had better results with Remicade and Humira than with Stelara and Entyvio for Crohn's. My daughter's pediatric GI said Entyvio (in her experience) was a "weaker" biologic and it also was a slow acting biologic. My daughter was on it (briefly) and she said to give it 6 months to work. In contrast, Remicade and Humira work much faster, and with especially with Remicade, you have a lot more flexibility with the dosing and the frequency. You could start at 5 mg/kg every 8 weeks and increase it to as often as every 4 weeks. And the dose can vary from 5 mg/kg - 10 mg/kg, though sometimes doctors will go higher - my daughter went up to 20 mg/kg every 4 weeks.
Typically Remicade is the biologic used first for severe Crohn's, though of course you can certainly start with Stelara or Humira or Entyvio. Plus, you can also add an immunomodulator like Methotrexate to give any of the biologics "a boost," though it's done most often with Remicade and Humira.
Besides those biologics, Cimzia and Simponi are other anti-TNFs used for IBD. Xeljanz and Rinvoq are a JAK inhibitors approved for UC, and Rinvoq is doing very well in Crohn's studies too. My daughter has been on it (it was prescribed for her psoriatic arthritis which is how we got it approved). JAK inhibitors are pills which is a plus for some - I know you mentioned one of your sons had issues with injecting himself.
There are also other drugs in trials - similar to Stelara, Tremfya and Skyrizi are IL-23 inhibitors (Stelara is an IL-23 and IL12 inhibitor, so it's a bit different). Skyrizi has been filed for approval and Tremfya is still in trials for both UC and Crohn's.
There are also trials using two biologics together - such as Remicade and Entyvio for example. My daughter has severe inflammatory arthritis so she has been on two biologics for years now (almost 5 years) - in her case, one for the Crohn's and one for the arthritis. But GIs do occasionally use two biologics just for Crohn's - again, @crohnsinct's daughter was on Entyvio and Humira for a while. There are more studies being done on dual biologics now.
There are also other drugs used occasionally - stronger immunosuppressants like Tacrolimus. And there are plenty still in early trials.
Surgery is also an option. TPN or EEN are options to help a biologic kick in, as are steroids.
I honestly would not worry about your child not responding to any biologic at all. I've been on this forum for a long time (well, the parents' forum) - 9 years or so. And very few kids didn't respond to anything. I wouldn't worry if it's only been 10 weeks with Entyvio - you may need to wait longer or he may need infusions more frequently before you can say it isn't working at all.
Thank you so much for your reassuring email. I'm especially interested in the possibility of using two biologics (though our insurance company might never go for that).
My husband's brother died of lymphoma a couple of years ago at a very young age- right before my sons were diagnosed with Crohn's. So I'm especially nervous about giving my sons anything that increases lymphoma risk, even by a tiny bit - though I am also aware of the risks of not controlling the inflammation in their guts. I have read many many studies, and I think I have a good handle on the statistics of it all. Nonetheless, this has made the decisions about medications particularly wrenching.
My husband's brother died of lymphoma a couple of years ago at a very young age- right before my sons were diagnosed with Crohn's. So I'm especially nervous about giving my sons anything that increases lymphoma risk, even by a tiny bit - though I am also aware of the risks of not controlling the inflammation in their guts. I have read many many studies, and I think I have a good handle on the statistics of it all. Nonetheless, this has made the decisions about medications particularly wrenching.
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Two biologics are typically only used if you've tried absolutely everything for the disease and have no other options left. My daughter had failed 5 biologics with Methotrexate and several other immunosuppressants before we moved on to two biologics. She is now on her last option and has failed a total of 8 biologics for her arthritis. For Crohn's, there are fewer options, but chances are your insurance company will fight it unless your son has tried Remicade or Humira and even then, since he has Crohn's colitis, your GI might want to try Rinvoq. Two biologics ups the risk of infections, so it is a last resort.
Regarding Lymphoma, the statistics are very, very low. In fact, a lot of the cancer risk comes from long-term inflammation, so it's much safer to use drugs like Remicade than to try to avoid them, particularly when the colon is involved. The cancer risk does become higher if you add Methotrexate, but it's still tiny.
When my daughters were diagnosed, I agonized over every medication decision. My younger daughter was under-treated and that is what resulted in such refractory arthritis and so much joint damage - so much that she had prosthetic joints put in at 22. It took us a while to realize that while the meds are scary, the disease is scarier. When she was diagnosed with Crohn's (several years after the juvenile arthritis diagnosis at 12), we treated that aggressively - with Remicade and Methotrexate ASAP. Within 8 months, her scopes showed that her colon was perfect - all the ulcers had healed and there was NO inflammation on biopsies and her terminal ileum was very mildly inflamed. Now I'm not afraid of the meds at all...I am just so grateful they exist and that there are more in the pipeline.
Regarding Lymphoma, the statistics are very, very low. In fact, a lot of the cancer risk comes from long-term inflammation, so it's much safer to use drugs like Remicade than to try to avoid them, particularly when the colon is involved. The cancer risk does become higher if you add Methotrexate, but it's still tiny.
When my daughters were diagnosed, I agonized over every medication decision. My younger daughter was under-treated and that is what resulted in such refractory arthritis and so much joint damage - so much that she had prosthetic joints put in at 22. It took us a while to realize that while the meds are scary, the disease is scarier. When she was diagnosed with Crohn's (several years after the juvenile arthritis diagnosis at 12), we treated that aggressively - with Remicade and Methotrexate ASAP. Within 8 months, her scopes showed that her colon was perfect - all the ulcers had healed and there was NO inflammation on biopsies and her terminal ileum was very mildly inflamed. Now I'm not afraid of the meds at all...I am just so grateful they exist and that there are more in the pipeline.
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It may not matter at this point but I have heard a Stelara rep say that 12-18 months is a realistic time frame for Stelara and recently they are moving to a second infusion several months in - to up the drug levels. So besides switching drugs - there are a variety of options within some of the drugs.
One of my sons was on Stelara for nine months total. for the last four of those months, he was getting an infusion every four weeks. There was no improvement. Hopefully they didn't switch him off of it too fast, but wouldn't there have been some sign that it was working by that point?
My other son is still on the Stelara, every four weeks. He has shown some improvement, though what confuses me is that this disease waxes and wanes, so how do you know whether it's the waxing and waning of the disease and what is an effect of the medication?
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Disease markers
Crp /esr cmp CBC and fecal caloprotectin should all be normal if the meds are working
Symptoms can be ibd ,ibs, or another extra disease .
Even if the meds are working your child will not be 100% normal every single day .
You have to go by markers and imaging/scopes
In my kiddo case - second and third disease were causing symptoms we thought was just “crohns”
Was bloodwork off for the child who switched off Stelara?
Second child is bloodwork/fecal cal normal ?
also
Understand risks
Talk to your doc about BRAND
B-benefits
R-ridks
A- alternativeS
N-nothing (as in change nothing -do nothing )
D - decision
every single thing your children do has risks every single day
Most of those risks improves quality of life so we ignore them
Riding in a car (risk of death is 1 in 250 ) for under 14 -I have my head in the sand on the much higher number over age 14
Swimming (1 in 1000) even if they know how to swim
Infant Tylenol anyone (Steven Johnson syndrome, liver failure, death ) but worth the risk
So talk about risk with your childrens gi
Before giving up on a med
Adding that can help
Methotrexate
Formula only
Steriods
And some need all three added
also talk about why you/they think the meds are not working
Expectations on what is normal for crohns
What blood markers reveal etc…
Crp /esr cmp CBC and fecal caloprotectin should all be normal if the meds are working
Symptoms can be ibd ,ibs, or another extra disease .
Even if the meds are working your child will not be 100% normal every single day .
You have to go by markers and imaging/scopes
In my kiddo case - second and third disease were causing symptoms we thought was just “crohns”
Was bloodwork off for the child who switched off Stelara?
Second child is bloodwork/fecal cal normal ?
also
Understand risks
Talk to your doc about BRAND
B-benefits
R-ridks
A- alternativeS
N-nothing (as in change nothing -do nothing )
D - decision
every single thing your children do has risks every single day
Most of those risks improves quality of life so we ignore them
Riding in a car (risk of death is 1 in 250 ) for under 14 -I have my head in the sand on the much higher number over age 14
Swimming (1 in 1000) even if they know how to swim
Infant Tylenol anyone (Steven Johnson syndrome, liver failure, death ) but worth the risk
So talk about risk with your childrens gi
Before giving up on a med
Adding that can help
Methotrexate
Formula only
Steriods
And some need all three added
also talk about why you/they think the meds are not working
Expectations on what is normal for crohns
What blood markers reveal etc…
crohnsinct
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Hi there! Sorry I am answering this post so late…been busy around here.
Totally academic at this point but Remicade has the best success rate of all the biologics with Humira coming in a close second. Stelara does not have a good track record with colonic disease, but it can work, it just takes a really long time. Add to that the fact that you have your best shot at responding to any med when you are biologic naive. Once you have tried a med, if you have to switch class, the possible success rate is automatically lower. I know 30-40% sounds abysmal but that is as good as it gets I am afraid but I am always surprised that we don't see more med failure around here so I know many really do work.
It's water under the bridge at this point. We are all faced with these extremely difficult decisions and have no idea what we are doing. Your concern over cancer is totally understandable as the parent of a newly diagnosed child. However, I will tell you that we used to have a member here who had a daughter who actually had cancer and later was diagnosed with Crohn's and even with her history the docs all suggested Remicade and she did it and she was fine. I will add that the risk of undertreated disease (simmering inflammation) is a big risk for colo-rectal cancers so we have to pick our fights.
I have two daughters with Crohn's and Maya is right that one of them has severe refractory disease. She has been through every approved med, some not yet approved and approved meds at off label dosing. She has combined biologics. She has combined biologics with immunomodulators. Been on steroids. Tacrolimus. Various antibiotic cocktails. Had experimental arterial injections. Tried CDED and SCD (diets) and done Exclusive Enteral Nutrition numerous times. We have also looked at stem cell transplants. My point being you still have a lot of options left.
One thing I wanted to say is that often at diagnosis the disease is just too severe for the dugs to be able get the kids into remission. The drugs need a little help to get over the hump so to speak. This help could come in the form of faster acting steroids, immunomodulators, diet and EEN.
My severe refractory daughter was steroid dependent for 4 months after dx. We decided to add EEN to see if that might help and it was just the boost that Remicade needed. EEN knocked down the inflammation to a point where the Remicade could then take over and maintain things for a while.
My other daughter with mild to moderate small bowel disease has been on Remicade for 8 years now. It isn't always smooth sailing. She has flared several times. For her, we hit each flare with a course of EEN to knock back the inflammation, make some changes to her Remicade schedule and then it is smooth sailing for a bit more.
I hope this helps. If you have any other questions, fire away.
Totally academic at this point but Remicade has the best success rate of all the biologics with Humira coming in a close second. Stelara does not have a good track record with colonic disease, but it can work, it just takes a really long time. Add to that the fact that you have your best shot at responding to any med when you are biologic naive. Once you have tried a med, if you have to switch class, the possible success rate is automatically lower. I know 30-40% sounds abysmal but that is as good as it gets I am afraid but I am always surprised that we don't see more med failure around here so I know many really do work.
It's water under the bridge at this point. We are all faced with these extremely difficult decisions and have no idea what we are doing. Your concern over cancer is totally understandable as the parent of a newly diagnosed child. However, I will tell you that we used to have a member here who had a daughter who actually had cancer and later was diagnosed with Crohn's and even with her history the docs all suggested Remicade and she did it and she was fine. I will add that the risk of undertreated disease (simmering inflammation) is a big risk for colo-rectal cancers so we have to pick our fights.
I have two daughters with Crohn's and Maya is right that one of them has severe refractory disease. She has been through every approved med, some not yet approved and approved meds at off label dosing. She has combined biologics. She has combined biologics with immunomodulators. Been on steroids. Tacrolimus. Various antibiotic cocktails. Had experimental arterial injections. Tried CDED and SCD (diets) and done Exclusive Enteral Nutrition numerous times. We have also looked at stem cell transplants. My point being you still have a lot of options left.
One thing I wanted to say is that often at diagnosis the disease is just too severe for the dugs to be able get the kids into remission. The drugs need a little help to get over the hump so to speak. This help could come in the form of faster acting steroids, immunomodulators, diet and EEN.
My severe refractory daughter was steroid dependent for 4 months after dx. We decided to add EEN to see if that might help and it was just the boost that Remicade needed. EEN knocked down the inflammation to a point where the Remicade could then take over and maintain things for a while.
My other daughter with mild to moderate small bowel disease has been on Remicade for 8 years now. It isn't always smooth sailing. She has flared several times. For her, we hit each flare with a course of EEN to knock back the inflammation, make some changes to her Remicade schedule and then it is smooth sailing for a bit more.
I hope this helps. If you have any other questions, fire away.
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That makes sense. I would give Entyvio some more time. There are limited biologics, so you really do want to give each one the best chance of working. So adding something like Methotrexate or doing EEN or going back on steroids may be the way to go while you give Entyvio more time to work. With steroids, you could try Prednisone, Uceris or rectal steroids, or some combination of those. Proctofoam or hydrocortisone enemas or suppositories are commonly used. You can also increase the frequency of infusions to every 6 or 4 weeks. If your son is not open to EEN (which is hard away at college), then maybe adding a diet like CDED or the SCD might help some. You could try antibiotics (for a short time usually).
If all that fails, then I would strongly consider Remicade or Humira - ideally Remicade since that has been shown to work best and has the most flexibility with dosing and frequency, but Humira works very well too.
Thanks for your responses.
When my sons were first diagnosed, we met with around 5 IBD specialists from around the country (an advantage of the pandemic in that we could meet virtually). It was very helpful meeting with so many doctors in that we learned different things from different specialists. However, we got a consistent message from all of them: that there were three main possibilites to start with - Remicade, Entyvio, and Stelara - and the common message from all of them was that they were all equally likely to work or not work and that there was no way to know ahead of time which would work for our sons. The rest of the message was that Remicade would act faster and be easier to get through insurance, but that Entyvio and Stelara might be a little bit safer. We will give the Entyvio more time, and I will try to be patient with it. My son isn't feeling a whole lot of symptoms now, but his lab numbers aren't budging much.
When my sons were first diagnosed, we met with around 5 IBD specialists from around the country (an advantage of the pandemic in that we could meet virtually). It was very helpful meeting with so many doctors in that we learned different things from different specialists. However, we got a consistent message from all of them: that there were three main possibilites to start with - Remicade, Entyvio, and Stelara - and the common message from all of them was that they were all equally likely to work or not work and that there was no way to know ahead of time which would work for our sons. The rest of the message was that Remicade would act faster and be easier to get through insurance, but that Entyvio and Stelara might be a little bit safer. We will give the Entyvio more time, and I will try to be patient with it. My son isn't feeling a whole lot of symptoms now, but his lab numbers aren't budging much.
crohnsinct
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Wow. I am surprised they gave all drugs equal shots. Colonic disease has really low results with Stelara. Entyvio is better but nowhere near Remicade. But they are right in that what works for some doesn’t work for others so it’s a gamble.
I would like to echo what Maya said about adding things. Entyvio took forever for my daughter. I think her GI said give it 24 weeks. She was in double dose and every 4 weeks. She got nowhere. Then we added enticort and later uceris. Did some rectal foam, suppositories etc. added antibiotics. Eventually landed on Humira and Entyvio and that kept her out of the hospital. But still not enough for her. My point being there are a lot of variations on a theme.
I would like to echo what Maya said about adding things. Entyvio took forever for my daughter. I think her GI said give it 24 weeks. She was in double dose and every 4 weeks. She got nowhere. Then we added enticort and later uceris. Did some rectal foam, suppositories etc. added antibiotics. Eventually landed on Humira and Entyvio and that kept her out of the hospital. But still not enough for her. My point being there are a lot of variations on a theme.
"Colonic disease has really low results with Stelara."
Do you have a reference for that?
I'm seeing this study that shows the opposite, but it's just one study, and I don't see enough details of their statistics to be able to evaluate it:
https://journals.lww.com/ajg/fullte..._of_ustekinumab_in_ileum_dominant_vs.856.aspx
Do you have a reference for that?
I'm seeing this study that shows the opposite, but it's just one study, and I don't see enough details of their statistics to be able to evaluate it:
https://journals.lww.com/ajg/fullte..._of_ustekinumab_in_ileum_dominant_vs.856.aspx
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“Colonic disease has lower results in Stelara “for us was based on what his pediatric Gi was seeing in his crohns patients at the time Stelara was prescribed for my kiddo .
Heard the same thing at a second Gi after moving.
Studies only go so far to predict how your children will respond .
My kiddos body didn’t “read the memo “ of how it is supposed to behave.
So for him it’s a lot of trial and error
And”breaking in” new specialists to realize Ds doesn’t follow the textbooks or rules they saw previously
Heard the same thing at a second Gi after moving.
Studies only go so far to predict how your children will respond .
My kiddos body didn’t “read the memo “ of how it is supposed to behave.
So for him it’s a lot of trial and error
And”breaking in” new specialists to realize Ds doesn’t follow the textbooks or rules they saw previously
crohnsinct
Well-known member
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Hmmm…IDK about that study. It seems the follow up data is pretty limited given they were only able to do follow up colonoscopies on 10 of the colonic patients and 39 of he ileal disease patients. That's less than half of the colonic patients who got scoped. Begs the question as to what happened to the other 12 patients? If they failed the drug miserably and dropped out of the study they are not being included in the end point results but their experience matters.
They also say that only 23 of the patients had ulcerations prior to the start of Stelara. That is a pretty low number and points to the fact that maybe most of these patients had mild disease?
I do not mean to diss any study because I think they are all important and we learn from all of them but I think you have to really look at all the facts and not take any one study or the headlines to the bank so to speak.
I think it is good that they say in their conclusion that it warrants further study.
What I will say is that my daughter (who is now facing colectomy) has been told by three of the leading GI's that Ustekinumab is both very slow acting and also not likely to rescue her colon as it works better in ileal disease than colonic disease. Just their experience but she is now being seen by one of the leading IBD centers in the country with over 4000 patients.
HOWEVER, this is not to say that everyone will react the same to all drugs. The million dollar question is which drug will work the best for this patients. For some patients it is tnf that drives disease, for others it is the IL23 or JAK inhibitors the will work. Then you have the patients who morph from starting with tnf driven disease to then develop IL23 disease etc. Much of the current research is focused more on identifying what is driving each patients disease rather than new drugs. If we can identify what will work right from the start, we could use the right drug! We have plenty of them and they are good at what they do. We just don't know which to use and when.
They also say that only 23 of the patients had ulcerations prior to the start of Stelara. That is a pretty low number and points to the fact that maybe most of these patients had mild disease?
I do not mean to diss any study because I think they are all important and we learn from all of them but I think you have to really look at all the facts and not take any one study or the headlines to the bank so to speak.
I think it is good that they say in their conclusion that it warrants further study.
What I will say is that my daughter (who is now facing colectomy) has been told by three of the leading GI's that Ustekinumab is both very slow acting and also not likely to rescue her colon as it works better in ileal disease than colonic disease. Just their experience but she is now being seen by one of the leading IBD centers in the country with over 4000 patients.
HOWEVER, this is not to say that everyone will react the same to all drugs. The million dollar question is which drug will work the best for this patients. For some patients it is tnf that drives disease, for others it is the IL23 or JAK inhibitors the will work. Then you have the patients who morph from starting with tnf driven disease to then develop IL23 disease etc. Much of the current research is focused more on identifying what is driving each patients disease rather than new drugs. If we can identify what will work right from the start, we could use the right drug! We have plenty of them and they are good at what they do. We just don't know which to use and when.
Yes, I was agreeing with you that we needed to take the one study with a huge grain of salt. As I said, they didn't give enough details on their statistics or methods for me to be able to evaluate it. From what I could see, the patients with involvement of the ileum had other factors against them as well, and I'm not sure if and how they tried to match the patients in their study.
I try to look at studies because it drives me crazy how little is known, but my mom does always remind me that medicine is a science with an n of one - like you were saying, it's hard to predict things for individuals. Here I have genetically identical twins, but one seems to have responded to the Stelara and one didn't. Go figure.
I try to look at studies because it drives me crazy how little is known, but my mom does always remind me that medicine is a science with an n of one - like you were saying, it's hard to predict things for individuals. Here I have genetically identical twins, but one seems to have responded to the Stelara and one didn't. Go figure.
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crohnsinct
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Haha. Good point on the twin front I have two with Crohn’s and I say the same but they aren’t identical twins.
My girls had a famous GI who says medicine is just as much art as it is science. Then their second GI (because we moved) takes the art but to a whole new level!
PS I took no offense. I was agreeing with you also. Sorry if that got lost in translation.
My girls had a famous GI who says medicine is just as much art as it is science. Then their second GI (because we moved) takes the art but to a whole new level!
PS I took no offense. I was agreeing with you also. Sorry if that got lost in translation.
Thanks for sharing your experiences. There's so much to navigate here.
BTW, when we decided about what medications to start with, we didn't yet know that our sons only had strictly colonic disease. The son that the Stelara seems to be working for had been quite sick (before a course of antibiotics), so everyone was eager to start treatment - but we weren't able to schedule him for an MRI right away because it was in the middle of the pandemic, and the hospitals were overwhelmed.
BTW, when we decided about what medications to start with, we didn't yet know that our sons only had strictly colonic disease. The son that the Stelara seems to be working for had been quite sick (before a course of antibiotics), so everyone was eager to start treatment - but we weren't able to schedule him for an MRI right away because it was in the middle of the pandemic, and the hospitals were overwhelmed.
