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Crohn's Disease Forum » Parents of Kids with IBD » Using Stelara For Children With Crohn's


 
09-10-2014, 02:52 AM   #151
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What a great update.
09-10-2014, 03:17 AM   #152
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Yay Gus' Mom! I love giddy!

We are cautiously optimistic that things have taken a turn here too. Best fecal cal ever at 189. Still on 50% EN and still weaning Uceris but so far......so good.

Claire gets dose 4 in a couple of weeks.

J.
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Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
09-10-2014, 08:31 AM   #153
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Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!
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symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
09-10-2014, 11:43 AM   #154
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I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here).
Awww Kathy, I just want to give you a big hug! I know that you and Brian are having a really tough time. I wish there was something more I could do to help.

You are right, from what I can tell, the Pediatric GIs are very excited about Vedo because it was designed for Crohn's, not something else. Since it has the same working mechanism as Stelara (anti-adhesion), I am hopeful that Brian will have success with it.

I think the genetic history is a great idea. More and more work is being done with genetics for unlocking the mysteries of IBD. I actually approached our doctor with similar questions when we first learned that the Humira had stopped working. I made a family tree chart of inflammatory and autoimmune diseases. Our doc wasn't sure what to do with it at the time, but my rationale was that the information in the tree could suggest a treatment path based on Gus' gene pool.

My paternal grandmother had MS (which is what Tysabri was designed for originally), so I wondered if Tysabri could be effective for Gus. I have psoriasis. It would be interesting if we could make an objective correlation between Gus' success and family history. How much easier would it be to find an effective treatment path if there was a correlation with the family inflammatory/autoimmune history.

Keep us posted Kathy. Lots of hugs and prays going out your way!!
Cheryl VT
09-10-2014, 01:40 PM   #155
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Stelara is actually an IL 12 and IL 23 inhibitor, which is different from anti-adhesion. They're actually completely different - Vedolizumab is gut specific and Stelara is not (which is why it works for psoriasis and psoriatic arthritis).

Vedolizumab binds exclusively to the α4β7 integrin, a primary mediator of gastrointestinal inflammation. It lessens inflammation in the gastrointestinal tract by selectively inhibiting the entry of inflammation-stimulating lymphocytes into the gastrointestinal tract without blocking systemic adaptive immunity.
Ustekinumab is a human immunoglobulin G1 (IgG1) antibody directed against the p40 subunit of IL-12 and IL-23 cytokines
The gene IL23R is actually associated with IBD, psoriasis and Ankylosing Spondylitis, which is why so many doctors are very hopeful about Stelara (even though it is currently approved for only psoriasis and psoriatic arthritis).
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
09-10-2014, 02:44 PM   #156
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Cheryl,
I'll take that big hug!!

Maya, I'm not sure if I heard our GI right, But he said one reason its not approved yet for crohn's is dosing. I could be so wrong.

The research for both sound good. Like they both should work. I like that Stelara is systemic. But GI's seem to like that Vedo is Specific. I guess we have to go with what our doctors say to do. I really pushed for Stelara... so I know he knew my opinion!! Oh well, we see what happens from here. I hope and pray they both work... Then each of us have another option down the road.
09-10-2014, 02:52 PM   #157
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I don't know much about Entyvio Brian'sMom, but I hope it will work for your son! I've heard it works very well for Ulcerative Colitis - perhaps since Brian has issues in his rectum, it will work well for him too? He has been through so much, he really deserves a long long break from all of this.

I think Phase III trials are when they figure out dosing, but I could be wrong. Since it isn't approved yet, it does seem like doctors sort of "make up" the dosing for each individual patient with IBD! We were told 2015 for Stelara's approval... which is not so far away, so maybe we'll know more soon.
09-10-2014, 03:02 PM   #158
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My daughter was put on Stelara before Vedolizumab came out after failing all other Biologics. Stelara has been GREAT for her! She was able to have her ileostomy reversed, and the pics of her colon looked the best it had looked in two years since before starting Stelara. The thing we are dealing with now is a colon stricture! She has to be very careful with what she eats, but I am trying to look up holistic type things that might be able to help with that too! It's never ending!
09-10-2014, 04:25 PM   #159
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Thanks Maya 142. I'll have to clarify the details with our doc next time we see him.

Whatever the mechanism, it is doing a great job for Gus. Though it would be great to be able to connect the dots between WHY some meds work, where others do not on a one to one basis.
09-11-2014, 08:50 PM   #160
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Yay for Gus and Claire!! I keep wondering why our GI went with Vedolizumab despite my begging for Stelara (From seeing success stories on here). He is just convinced that Vedo is the next big thing and that it was made for Crohn's and UC. His reason he said for us not to start with Stelara is that it was made for psoriasis and the dosing for crohn's has to be tweaked until the correct dose is figured out. Do you think he made the right decision? The Vedo takes about 10-12 weeks to see a response. And as you all know, Because his rectum is so badly damaged... the GI said its possible that no medicine can fix that area now. Lots to consider when its the complicated rectum. But I can't help but think... when I read these posts... Are we on the right thing??!! Oh the worries of this disease. One thing too... The GI also started a new thing this week.... He's having a team of specialists to look over Brian's whole case from the genetic and immunology side of things. The whole immune deficiency side of things. I asked him, "Like maybe he doesn't have crohn's?" He said, "That's what I want to make sure of. Since Brian hasn't ever responded to any of the drugs for crohn's. And either did his aunt that had UC. Remember, she recently died due to potassium levels and other things. She never was in remission her whole life either. Sorry to hijack this thread... It just kinda pertains to me and my research and my worry. And all my smart mom's are on here!!
You are not a hijacker! We love you, mama. Vedo was our plan B. We went Stelara because the mechanism was the other end of the spectrum from the TNF blockers. Many insurance companies won't cover it because using it for Crohn's right now is technically "off label". Because of Claire's arthritis problems, I suspect, our insurance didn't fight with us.

Claire is her GIs first patient on it but some of the adult GI docs at Vandy had patients doing well on Stelara. Her doc talked with the folks at Stelara about the dosing, his colleagues at Vandy and some pediatric colleagues at Cinncy. I was nervous nelly about the dosing process but I have calmed down. (well, my version of calm ). He said the same thing about 12 week loading cycle like Vedo.

Big hug and plenty of prayers for your sweet boy.

J.
12-27-2014, 04:05 AM   #161
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I'm happy to report that Gus' freshman year of high school is going well, even with his crazy schedule (6:45am band to 5pm cheer, later on game days). He has the energy to keep going all day and to keep up with his homework too. He is stronger and more engaged than he has been in years.

His labs continue to look good, not that labs ever tell the true story for him. He remains pain free, a better indicator of his Crohn's being controlled. Puberty has finally begun and he is growing, gaining weight and even has hair in some new places.

I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.

I know Vido is the new "it" drug for Crohn's. I really do hope that it brings relief to those who need it so desperately. But, just in case another option is needed...I'd definitely keep an open mind to Stelara.

Looking forward to a very happy new year indeed!
12-27-2014, 05:25 AM   #162
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I wish I understood why the Stelara is working so well for him when nothing else did. Is there something that connects between his genetics and the drug or is it in the working mechanism of the drug? I think knowing more about that might be helpful to others who have also struggled with finding something that works for them.
This is brilliant! and surely has……I am so very happy for you both.

I often ponder this question myself and I am leading toward thinking in these cases there is a complementary effect between the genetics and the drug. Hopefully in years to come there will be more personalised medicine.

Onwards and Upwards Gus and may the good times last a lifetime!

Dusty. xxx
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12-27-2014, 12:31 PM   #163
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Same here with Kayla and Stelara! She continues to do so well on it after failing all other meds! So happy we were given the opportunity for her to be on it off label, and that our insurance company covers the cost too! Here's hoping both Kayla and Gus continue to stay in remission on Stelara! Happy New Year!!
12-27-2014, 03:28 PM   #164
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We see a researcher who focuses on AS who recently told us that for AS IL-23 is the target to block. There's a new IL-23 dug (not Stelara) that will come out in 2016 (or around 2016) that he is very excited about - he says it will work much better than Stelara!

Since AS and Crohn's are related, perhaps that's why for some patients with Crohn's IL-23 inhibitors work like magic?
12-28-2014, 07:07 AM   #165
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Hello! Both of my kids are now on Stelara. Olivia is going on 2 years this April and is doing great,,,except for a few bumps in the road recently. She was very stressed during college finals and was not eating very healthy with her crazy study hours ect,,,, her recent labs have slipped a little with a slight inrcrease in CRP and low albumin. Her thyroid labs (which is a good indicater of a flare) were way off again...surely not absorbing her hormone replacement and had to increase her dose. She has complained of occassional cramping and bloating and has had 2 recent episodes of blood with BM, and now has a mouth ulcer. Hmmmm...most definitely a mild flare. Liv usually has disease activity this time of the year...cyclic for both kids. She has also just recently started on birth control pills to help with painful, heavy menses that cause her severe nausea, vomiting and headaches every month. The pills have helped with her dysmennorhea, but I cant help but think the hormones may be messing with her CD and possibly causing this mini flare???? She has been having no issues with the Stelara...GI wants to scope her after her next semester is over just to have a look inside. She has not had a scope since starting the Stelara. Praying things look good and she could continue with this drug.

My son started Stelara 3 months ago after using Cimzia for 18 months with absolutely no effect on his CD. Prior to that he had been on Remicade for almost 2 years with good control until he developed antibodies and became symptomatic again. He sees an Adult GI who is the chief MD of the practice and was uncomfortable prescribing the drug. Both of my kids are the first patients on Stelara for both of their MD's. She initially wanted Trevor to start Humira, but we begged her to prescribe the Stelara because Liv was doing so well with it. After some research on dosing, ect... she agreed to let him try it. I was thrilled when our insurance company agreed to cover the drug for both kids and so far so good. Symptoms have been slowly decreasing (Stelara took 7 months to work for Liv) and he has had zero side effects with it. His labs have been normal, except for some ongoing anemia that developed when he was on Cimzia and he continued to bleed on and off for the entire time...the only thing that stopped the constant bleeding were steroids. Since starting Stelara, he has been able to wean from steroids...bleeding has stopped. I am keeping everthing crossed for both of my children that Stelara contines to work... So happy to hear such great updates from everyone!!! Happy New Year!! Kim
12-28-2014, 10:51 AM   #166
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Since there aren't any kids on Vedo on here.... I'm stuck looking at the adult thread. You all know how kids handle this disease compared to adults. It's all complain, complain, complain on that adult thread. I begged for Stelara for a year... our GI wanted Vedolizumab since issues were in large bowel. As with Stelara, Vedo is slow to work... but it's hard not to have any support on here.
12-29-2014, 01:28 PM   #167
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Way to go Livilou!
07-18-2015, 11:10 PM   #168
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Stelara is still doing the trick for Gus!

Puberty is (finally) in full swing. He has grown 4" in 15 months, amazing for him. He has a 24/7 appetite, pimples, and a voice that cracks. Gives me warm mommy fuzzies.

He managed to make it through his entire freshman year, rough schedule, higher expectations, stress and all...without a flare! Can I just say A-M-A-Z-I-N-G!!!

He will be on the cheer squad again next year, as the lone yell leader. Cheer has been awesome for him. It is something physical that he CAN do and it provides an wonderful opportunity for social inclusion. They just finished pink week...not easy for the male member of the group. He won the spirit award for wearing his "Tough Guys Wear Pink" shirt and dying his hair pink. Love it when he beats the girls on their turf! They leave for cheer camp on Monday. Can't wait to see the new moves.

Gus is still the only local kid on Stelara for Crohn's. The Peds GI docs have all turned their attention to Vedo instead. I really hope those kids find the same success as Gus has had.

In fact, life has become so "normal," I'm starting to look into forming a local support group. The closest one to us is over an hour away. We'll just have to wait and see how that goes.

Happy summer to one and all.
Cheryl VT

Last edited by vtfamily; 07-20-2015 at 08:14 PM.
07-20-2015, 08:05 PM   #169
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That is so amazing to hear!!!
Yay for good news! I hope he has an awesome time at cheer camp!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-20-2015, 08:16 PM   #170
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What wonderful news!! Love hearing about kids doing well on new meds!

PS - Love the picture! Gus is so grown up!
01-15-2017, 09:10 PM   #171
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Another year, time for another update.

Gus was a "little guy" so for long, it has sort of taken me by surprise that he is really maturing physically and much closer to "full grown adult" size than little kid size. He is now 4" taller than me...and to think I was worried he wouldn't ever cross the 5 foot mark. A junior in high school now, he was telling me that he was thinking about trying out for football next year. I think that is more an indication of how good and how strong he feels...not that he really wants to line up on the grid-iron. I think what he really wants, in his heart of hearts, is to prove to his long time friends that he is able to keep up with them now. All of those friends from Kindergarten who grew taller, and stronger, and faster, and who left him behind when he couldn't keep up anymore in 4th grade. The real friends have remained by his side and I remind him to not worry about the rest.

Stelara update. Stelara is still doing the trick. He has been on 45mg for 4 years now. Though it seems like it is not holding out for the whole 8 weeks any longer. Stelara was approved for Crohn's in October at 90mg for adults. So, we are finally going to be using Stelara "inside the lines" for the first time. He is moving to 90 mg every 8 weeks and had his first 90 mg dose last week. Fingers, toes, and shoe laces crossed we can continue for a long time to come.

When we visited his GI doc, even the doc was surprised at how quickly Gus' body is maturing now that his body can function normally. We even had a nice chat about things to consider for Crohn's patients when thinking about college. Another note, Gus is just on Stelara, nothing else. The GI doc was sort of scratching his head about that becuase he would normally prescribe something to help reduce the development of antibodies too...but no, nothing else. Gus is doing very well with just the Stelara.

Wondering how all of your children are doing? Would love to see some updates:
Brian'sMom, kimmidwife, CarolinAlaska, Gmama, DustyKat, caroline, crohnsinct, livilou, Farmwife, and all...
01-15-2017, 09:19 PM   #172
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Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.
01-15-2017, 09:25 PM   #173
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Great to hear how well he is doing! Caitlyn failed Entyvio and is possibly going to try Stelara next. We will find out tomorrow. We are going to see if she qualifies for a research study. If she does not we will go ahead with Stelara.
Kim,

I will be saying prayers for Caitlyn's success. I am thankful everyday that Stelara has worked so well, and for so long for Gus.

Cheryl
01-15-2017, 09:37 PM   #174
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Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.
01-15-2017, 10:52 PM   #175
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Thanks for the wonderful update. Glad it has lasted so long for Gus! Is there any particular reason he wasn't put on 6MP or MTX to prevent antibodies? Just curious.
He was on 6MP and MTX with Remicade and Humira, but neither did the trick in preventing the antibodies. Honestly, when we started Stelara it was so far outside the box, I think his doctor was really just taking a stab in the dark and focused on the Stelara rather than the usual protocol for biologics.

Gus' GI doc has always said he is happy to share our experience with any other docs who are interested in floating the idea themselves. Let me know if you'd like the contact information for your doctor.

Cheryl VT
01-15-2017, 10:52 PM   #176
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Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing. Jaedyn is 4 years post diagnosis this month, but has never done great. Still stuck on the first immunologic they prescribed during her first year. We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-15-2017, 10:59 PM   #177
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Hi Cheryl, I'm so happy to hear how wonderfully Gus is doing. Jaedyn is 4 years post diagnosis this month, but has never done great. Still stuck on the first immunologic they prescribed during her first year. We're having a rough time, but will have scopes and a pill cam this week and we hope they change tracks finally after that.
I hope all goes well with the pill cam. Gus' scopes never revealed where or how bad his strictures were. The pill cam was a huge blessing for us...not because it revealed anything more than the scopes, but because it got stuck and they had to go in and surgically remove it. That was our first real break after about four years of little to no progress. That was the moment when all of the doctors finally saw what I knew all along...something was very wrong...and it was. They had to remove 35cm of his intestines at that time. It will always be one of the "best days" in our Crohn's story. Strange, but true.

Prayers for Jaedyn.
Cheryl VT
01-16-2017, 12:50 AM   #178
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What a fantastic update, I was just wondering not too long ago how he was doing. Glad the stelara is still working. Jack is now taller than his friends thanks to remicade. He also made the comment that he could have probably played football this year after having to quit his freshman year since he was just too small.
I bet you also get the utter shock and surprise from people who have not seen him in a while about how much he has grown and changed.
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-16-2017, 10:48 PM   #179
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kimmidwife,
How did the pill cam go today?
Cheryl VT
01-16-2017, 10:56 PM   #180
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It was Carol's daughter who is having the pill cam and scopes this week. We went to meet about Caitlyn doing a research study. It did not go great. I posted about it on my thread, the one titled it's been 7.5 years since diagnosis. If you want to take a look at it.
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