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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Using Stelara For Children With Crohn's


 
06-25-2014, 08:45 PM   #121
AZMOM
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We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!?

J.
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Julie

Mom to Claire - 11 going on 17

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
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-25-2014, 10:33 PM   #122
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Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.
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Kathy, Mom of 14 yr old Brian
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.
06-25-2014, 10:43 PM   #123
Maya142
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Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.
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Mom of M (20)
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
06-26-2014, 01:32 AM   #124
vtfamily
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We do our second Stelara dose Friday and these words are encouraging!!!!

I did not want to hold out for Vedolizumab. I'm sure it is great and helping A LOT of people safely or it wouldn't have gained approval. I'm just not ecstatic about it having the same mechanism - simplistically speaking - as Tysabri. No PML to date with the Vedolizumab but I'm paranoid! Aren't we all?!?!?!?!?

J.
We didn't have the option of waiting for Vedo either. Stelara has been a real blessing...even if Gus had to be the first kid in L.A. to use it.
06-26-2014, 01:45 AM   #125
vtfamily
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Cheryl, I have been mentioning Stelara to our GI at Mayo for a long time. He just never seems to engage in a conversation about it. We go back for a 6 month followup colonoscopy/MRI the end of Sept in Rochester with him. I intend to just ask him about it. Our KC GI at our last appt mentioned the Vedo... She was really excited but also mentioned the bad side effect it had. I asked her directly about Stelara and she said there wasn't as much excitment around it. I wonder why. KC is limited... so I just am holding my questions for Mayo. If Brian's rectum doesn't look better after 6 months of diversion... then we'll be going off of Cimzia/MTX so that will be time for discussion.
Kathy,

It's good to hear from you. Hope Brian is doing well. Was thinking about you the other day. Hope the follow-up goes well for you!

I think the lack of excitement around Stelara is because so few Crohn's patients are using it and it still carries TB risk. Whereas Vedo uses the same mechanism and has lower TB and lymphoma risks than other meds...as well as blocking the PML/JK virus risk of Tysabri. I understand the excitement, but I hope the GI community will continue to consider/use Stelara. Remicade wasn't tossed aside when Humira came on the scene! Many people benefited from both and I am sure that will be the case with Stelara and Vedo.

Keep us posted about Brian.

Cheryl VT
06-26-2014, 01:49 AM   #126
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Funny how all these doctors have their favorites. We have heard so many good things about Stelara and not much about Vedolizumab, but maybe that's because M also has arthritis and Vedolizumab is supposed to be gut specific.
We were told Stelara will be approved in 2015 but not sure if that is true.
So true about the favorites!

We were fortunate to not have to wait for the Stelara approval to begin using it. I shudder to think what we would have done without it for the past year.

06-26-2014, 05:29 AM   #127
AZMOM
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Cheryl - I hear ya. Claire is the first at Vanderbilt children's.

I am not 100% confident that the entyvio (vedo) eliminates the PML risk based on what I've read.

Read the two paragraphs before the FDA medwatch #.

http://www.fda.gov/newsevents/newsro.../ucm398065.htm

Now ALL THAT ASIDE - if I were to the place that my child was not doing well and this was my best option. I would not be deterred by a maybe.

Like Maya, we've got a lot of arthritis issues, so maybe that's why we went Stelara first.

Hugs,

J.
06-26-2014, 09:51 PM   #128
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Thanks for the link. I'll check it out.
06-28-2014, 12:37 AM   #129
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Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.
06-28-2014, 02:41 AM   #130
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Claire had Stelara #2 tonight. Praying!!!!

Maya142 - Claire says to tell your sweet girl IT BURNS. She was furious but she was tired. Usually an ice pack makes her happy but it didn't. All that said, it hurt less than 10 seconds. But I did want to tell you that Claire says it burns.

J.
Hugs to Claire. Painful meds are no fun for sure.

Gus said the Humira was the worst, most painful, of all the meds and the burn would linger for 30 to 40 minutes. He felt Stelara was better than Humira in that regard. He also said the Stelara injections don't hurt or bother him anymore. So, the good news is that she may find it isn't so painful down the road.

Cheryl VT
06-28-2014, 11:25 AM   #131
Brian'sMom
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Some have said that Humira isn't that bad... but Brian said it was liquid Fire!! It didn't last long either. But that 's what I worry about Stelara. These kids are so tough... why do the meds have to burn??!! Cimzia is 2 syringes with 200 mg each... its thick--so they go in slow. He says he'd take those over Humira any day... so I guess that gives me insight on how it felt.

J-Claire hasn't ever had Humira because of the TNF part right? I'd like to hear another comparison of the two from a kids point of view.
06-28-2014, 12:00 PM   #132
Maya142
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Thanks J! I was so hoping it wouldn't burn! M hated Humira but it really helped her so she got used to it. She also used to complain that is really burned.

I don't know if this is true but one doctor said they might be coming out with an IV version of Stelara. I know some of trials for Crohn's were done with IV Stelara. Don't tell your kids yet though, because I'm not sure and don't want to get their hopes up!
06-28-2014, 01:21 PM   #133
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The UK trial of Stelera is infusion based for the first part. The later parts are injection based. So yes it is possible to get Stelera as an infusion.
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
06-29-2014, 07:23 AM   #134
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Maya - it must since Claire rarely says MTX burns and we are 2 for 2 on it burning (Stelara).

We were never offered an IV infusion option?????

J.
06-29-2014, 11:12 AM   #135
my little penguin
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The thing to remember is if its available by injection most inssurance will probably not pay for the increase $$$ due to infusion ..
Will lidocaine help the burn with stelera ??
I know it helps some for humira ( but still burns per DS ).
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06-29-2014, 11:12 AM   #136
Maya142
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It's not out just yet J, some of the phase III trials for Crohn's were done as infusions. For psoriasis and psoriatic arthritis (which are approved) only the shot is available.
06-29-2014, 09:52 PM   #137
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MLP - I haven't worried much about the lidocaine. We have to get through one more loading dose (the big one) and then it will only be every 8 weeks. I'm figuring with everything else she's tolerated - a 10 sec (at the most) burn every 2 months will seem like child's play. Seems sad, right????

J.
08-26-2014, 10:01 PM   #138
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Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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08-27-2014, 09:19 PM   #139
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Found out today we are going through the process of getting approved for ustekinumab. Trying to get her started on it very quickly, like in next week. Any tips?
Hope you don't hit any road blocks with insurance.

Gus has been on it for a year and a half and is still doing really well.

Best wishes,
Cheryl VT
08-27-2014, 09:31 PM   #140
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The hospital does the process for me. The company that handles it is the same one that handled getting us approved for Remicade called BioAdvance. The manage all that directly. Now the concern will be the 20% not covered by insurance.

Gus has had resections, no? D is really scared of having the surgery as we were told from the GI it will most likely be permanent (no j-pouch)
08-27-2014, 09:41 PM   #141
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Gus has done very well with the Stelara. No reactions. He said it burns for a few seconds, but nothing like the intensity or duration that Humira stung.

20% wow! The cost for the 45mg dose here is $5,000. I don't know how we would ever be able to cover $1,000 for every injection.

I really hope it works for D. I'm all for avoiding surgery whenever possible!!
08-27-2014, 09:51 PM   #142
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OMG I so hope it is cheaper here! I can not afford $1,000 a shot. Humira had a plan that just accepted the 80% and waved the 20% fee. BioAdvance wasn't so good on that for Remicade and only granted it for a year. D was only on Remicade for 7 months before she went off so I never found out what happened after a year. The doc was talking about aggressively dosing her but I got confused with all the info. How often are the dosages for Gus?
08-27-2014, 09:55 PM   #143
my little penguin
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https://webrebate.trialcard.com/Coupon/StelaraPortal/

Sterlera assistance card covers some of the copay
Not sure if there is a similar program in Canada but might be worth a call.

We use one for humira and it covers all but $5 .
Good luck
08-27-2014, 09:55 PM   #144
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Gus takes the Stelara (45mg dose) every two months.

It seems so strange (in a good way) only having to see the doctor every two months, with no other concerns, pain events or hospitalizations in between.
08-28-2014, 09:06 AM   #145
SupportiveMom
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Just got off the phone with the hospital. Based upon her allergies to medications and her anyphalaxis reaction to Remicade they don't want her on Stelara. They just got the report from her 1st GI on the reaction because I mentioned it and the new GI didn't know it was that severe. Another med crossed off the list.

Trying Simponi instead. Not approved for kids yet is all I know. Time to switch into new research.
08-28-2014, 09:25 AM   #146
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SupportiveMom - My older daughter has been on Simponi (for AS not IBD). She was on the injection and did quite well on it (for a while). She got the 50mg dose every 3 weeks (it's usually given every 4 weeks for arthritis, the dose is higher for Ulcerative Colitis -100mg I think). The good news is that the injection is NOT at all like Humira- S said it did not burn at all!

There is also an infusion (called Simponi Aria) available but that is so far only approved for Rheumatoid Arthritis.

We have looked at Simponi for M, for both the AS and Crohn's. Some GI's are using it off-label for Crohn's. In M's case, we would do the infusion, Simponi Aria, because her doctor prefers the flexibility of it and has been able to get insurance to approve it for older teenagers (since it's not approved for kids yet). If high dose Remicade does not work, we're thinking either Simponi or Stelara.
08-28-2014, 09:26 AM   #147
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Simponi is almost approved for Juvenile Idiopathic Arthritis and has been through many trials on kids (in Phase III right now), so don't worry about it not being approved for kids. Pediatric rheumatologists also have been using off-label for a while - it has been suggested for M for two years now!
08-28-2014, 10:08 AM   #148
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The BioAdvance coordinator felt very confident it would be approved. She & 1 other colleague deals with all of SickKids approvals in the IBD dept. I found it annoying to do the infusions and much prefer administering at home if that continues to be an option. Her dosage is 2 pens at loading dose, 1 pen every 2 weeks. I hope you are right on the no burn. D cried every time I did it. They also cover the remaining 20% our insurance doesn't cover!
08-28-2014, 10:16 AM   #149
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S iced the first time, and by the second time did not bother icing at all. She used both the syringe and the pen (insurance messed up and sent the syringe for the first two months).

She said the syringe hurt less, but the pen really was not like Humira and didn't bother her at all (the needle hurts of course, but medication itself doesn't burn).

We were told the same doses for M (100mg) - if we do it, I'd also prefer injections over infusions (so much more convenient!) but her doctor will decide.
09-10-2014, 01:30 AM   #150
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Another school year has begun.

Gus' summer labs looked good. No signs of inflammation or new strictures. It looks like the Stelara continues to do well with managing both the pain and the disease.

It looks like he will be able to enjoy his first year of high school "like a regular kid."

What a busy year it will be too! He is carrying a full load of academic classes, with band an hour before school begins and cheer/yell leader (which counts for PE) until 5pm three days per week. Long days, but on the plus side, I hope he will be able to put himself ahead of the curve...just in case he has to slow down due to a flare in the future.

He has such a positive expectation for the year, it is making me positively giddy!
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