Stelara for nine-year old

[cre]

We have recently moved and began seeing a new team of doctors. After an endoscopy and colonoscopy, our doctor is ready to switch him to Stelara. I am looking for any feedback anyone could give. Our guy has been on Humira for the past 5 years, previous to that he did a brief run on Remicaide. Thank you in advance for all your thoughts/suggestions/stories etc.

 

[my little penguin]

Ds has been on Stelara since aug 2017
He takes 90 mg every 4 weeks to keep things calm
He was 14 when he started -now almost 17 after 5 years of humira as well and 8 months on remicade

Stelara takes 8 months on average to work
Until then you need a bridge
We were ready to give up more than once
After going to every 4 weeks that made a world of difference and the med has been good

 

[Jo-mom]

@cre - is there a reason they want to switch him from Humira to Stelara?

 

[FDK80]

I hope your brave kid is doing well.
but why did they switch his med to stelara instead of Humira?
sometimes they do combine medication (humira + steriods) to control CD.

regards

 

[cre]

Ds has been on Stelara since aug 2017
He takes 90 mg every 4 weeks to keep things calm
He was 14 when he started -now almost 17 after 5 years of humira as well and 8 months on remicade

Stelara takes 8 months on average to work
Until then you need a bridge
We were ready to give up more than once
After going to every 4 weeks that made a world of difference and the med has been good
[/QUOTE
@my little penguin
Thank you for that information. I was curious what a typical time frame would be. What do you mean by a bridge?

 

[cre]

@cre - is there a reason they want to switch him from Humira to Stelara?

@Jo-mom
Humira has never really been great for him. It is something that has kept him at bay, never sending him in a horrible downward spiral, but never put him into remission. Although his Humira levels look good, his most recent scopes show concerning amounts of inflammation. Another concern is his constant perianal condition that has never been under control.

 

[cre]

[QUOTE="FDK80, post: 1031605, member: 88573"
@FDK80
Thank you for the good wishes for our guy. He is a brave guy, just as each of you on here! Humira has never really been great for him. It is something that has kept him at bay, never sending him in a horrible downward spiral, but never put him into remission. Although his Humira levels look good, his most recent scopes show concerning amounts of inflammation. Another concern is his constant perianal condition that has never been under control. On several different occasions, we have had to do Steroids alongside Humira and methotrexate, which does help. But, it isn't much longer after discontinuation of steroids that the same issues arise.

 

[my little penguin]

Bridge therapy is typically steriods or exclusive enteral nutrition
Something that keeps inflammation down on its own while waiting for the Stelara to start working
Which truly does take 8 months on average
For ds it was longer
It took 8 months at every 8 weeks and he still had mild inflammation so he was switched to every 4 weeks

 

[crohnsinct]

Where is the majority of your son's disease? I ask because as far as I know Stelara doesn't have a very good track record with peri anal Crohn's disease. It is much more effective in the small bowel. The anti tnf's are usually the go to med for perianal Crohn's. So maybe adding Stelara to the Humira would be a good option. Entyvio would be another consideration and also I am learning now that various antibiotic cocktails help colonic and perianal disease. How brief was the run with Remicade and why did you drop it? How long ago was that? Sometimes you could revisit Remicade if the break was long enough.

 

[cre]

Where is the majority of your son's disease? I ask because as far as I know Stelara doesn't have a very good track record with peri anal Crohn's disease. It is much more effective in the small bowel. The anti tnf's are usually the go to med for perianal Crohn's. So maybe adding Stelara to the Humira would be a good option. Entyvio would be another consideration and also I am learning now that various antibiotic cocktails help colonic and perianal disease. How brief was the run with Remicade and why did you drop it? How long ago was that? Sometimes you could revisit Remicade if the break was long enough.

@crohnsinct
Thank you so much for the information, it definitely raises questions to bring next week as we move forward with a medicine change. The majority of his issues have been in his colon. His run with Remicade was very brief and happened upon dx, 6 years ago and it lasted about 6 months. We switched doctors because of a move and our new doctor believed Humira would be a better route for him as Remicade didn't seem to be working any longer.

 

[my little penguin]

So if I understand right
He was dx at age 3
Veo ibd is extremely difficult to control
Have you gotten a second opinion at a veo ibd clinic ?
Chop has one of the few in the country
They have a large database of kids and do a team of specialists approach
Even if you not close it is so worth a visit
They do video visits as well now
https://www.chop.edu/centers-programs/very-early-onset-inflammatory-bowel-disease-veo-ibd-programDs has participated
They do genetics /immunology/and Gi plus nutrition and other groups as needed

 

[crohnsinct]

That's a shame because there may have been strategies to employ with the Remicade but since you didn't have to stop due to antibodies and it has been years you might still be able to revisit it but it wouldn't be my first choice.

Stelara is much more effective with small bowel disease than it is with colonic disease. This isn't to say that it is not effective in some cases, it is just not the general go to for colonic disease. Most GI's would use Entyvio for colonic disease. If your son has disease in both areas, they may try to use two biologics. My daughter is on Entyvio and Humira.

Hugs. I know changing therapy can be scary with so much uncertainty about what will and will not work. IBD treatment is clear as mud!

 

[my little penguin]

https://www.sciencedirect.com/science/article/pii/S235230421930090X
Veo ibd is verydifferent than adolescent ibd
Especially if the child is dx slightly after 2

 

[my little penguin]

Another difference is that IBD in very young children can be resistant to many of the standard medications for IBD. This is particularly true in patients with infantile IBD, but even children with VEOIBD are often resistant to standard medical therapy and surgical therapy. In up to approximately 25% of these patients, not only do they have IBD, but they also have an underlying immunodeficiency, which can also impact therapy. However, VEO-IBD patients have not been well studied, largely because of the rarity of this patient population, so there remains a need for further research in order to obtain a better sense of what they respond to and what they do not respond to.

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843045/

 

[my little penguin]

Very–Early-Onset Inflammatory Bowel Disease

An emerging population of children younger than 6 years of age with IBD represents a unique form of disease, termed very–early-onset IBD (VEO-IBD), which is phenotypically and genetically distinct from older-onset IBD. VEO-IBD can be associated with increased disease severity and poor responsiveness to conventional therapies. As such, this population subset may require different treatment strategies.89 Thus far, there are only retrospective evaluations of these patients on anti-TNFα therapies. These reports have demonstrated higher rates of anti-TNFα failure in VEO-IBD than in older-onset IBD, during both induction and maintenance phases, with overall shorter duration of therapy due to failure to reach and sustain clinical remission.90-92

In addition, there have been reports that younger children require dose optimization more commonly than older children, which may also impact failure rates.93 Future prospective studies evaluating the role of proactive TDM and use of different dosing strategies are needed. Due to the possibility of poor response or durability of anti-TNFα therapies, additional consideration should be taken in the diagnostic evaluation of these patients, many of whom likely have different drivers of disease and require thorough immunologic and genetic workup.94 This evaluation can help determine if alternative targeted therapeutics would be more likely to be beneficial earlier in the treatment strategy.

From
https://www.gastroenterologyandhepa...ment-of-pediatric-inflammatory-bowel-disease/

 

[my little penguin]

https://www.chop.edu/centers-progra...bowel-disease-veo-ibd-program/patient-stories
Helpful stories

 

[Pangolin]

The thing that really worked for my son's perianal inflammation was EEN.

 

[cre]

So if I understand right
He was dx at age 3
Veo ibd is extremely difficult to control
Have you gotten a second opinion at a veo ibd clinic ?
Chop has one of the few in the country
They have a large database of kids and do a team of specialists approach
Even if you not close it is so worth a visit
They do video visits as well now
https://www.chop.edu/centers-programs/very-early-onset-inflammatory-bowel-disease-veo-ibd-programDs has participated
They do genetics /immunology/and Gi plus nutrition and other groups as needed

@my little penguin
Thank you so much for the insightful articles. I am going to go through and read up on them. Yes, he was several months shy of turning three when we finally got a dx (showing major signs 6 months before the dx). We spoke with our doctor today via telemedicine appointment, and she wants us to get a second opinion from CHOP. She is calling them today and hopefully, we will be making a trip fairly soon.

 

[cre]

That's a shame because there may have been strategies to employ with the Remicade but since you didn't have to stop due to antibodies and it has been years you might still be able to revisit it but it wouldn't be my first choice.

Stelara is much more effective with small bowel disease than it is with colonic disease. This isn't to say that it is not effective in some cases, it is just not the general go to for colonic disease. Most GI's would use Entyvio for colonic disease. If your son has disease in both areas, they may try to use two biologics. My daughter is on Entyvio and Humira.

Hugs. I know changing therapy can be scary with so much uncertainty about what will and will not work. IBD treatment is clear as mud!

@crohnsinct , thank you! Yes, it is a scary thing. We feel like now is the time to take the gamble. Our doctor explained, because of his perianal disease, she would choose Stelara before Entyio as of now.

 

[cre]

The thing that really worked for my son's perianal inflammation was EEN.

@Pangolin
That is very encouraging, thank you for sharing, and I'm happy to hear this was a positive thing for your son. This is something else we discussed today, we are on standby for approvals and that type of thing to begin EEN. The plan is to start that immediately while also waiting to hear and make an appointment at CHOP.

 

[polly13]

Hi cre
Your ds sounds very like my daughter Lucy, (12) diagnosed at two failed remicade, successful humira And methotrexate for 5 years. Lucy had very Severe peri anal disease at diagnosis. 2 years ago she started to have symptoms in other areas...... long story short, after trying een, switched to stelara, very slow to work and peri anal disease reappeared so ultimately ended up using een and having humira re introduced to treat the peri anal disease. If peri anal disease is present I would ask what their plan is on treating it, not sure stelara is the answer to that. Good news is that Lucy is very well now.
Hope all goes well for your ds