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Crohn's Disease Forum » Parents of Kids with IBD » Moving on to Stelara


 
07-26-2016, 07:49 PM   #1
Clash
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Moving on to Stelara

Hey guys. I decided to start a new thread since C is starting a new med.

So, to recap
C's scope looked bad- inflammation from surgical site and throughout colon with granulomas and mini ganulomas (yeah that's a new one for me).

At the follow up I asked if instead of moving to entyvio was there anyway C could get the dose schedule(higher dose than what's on the market now) of stelara that is in phase III trials and showing some good results. It's also in phase III trials for SpA which is why I hoped we could get it instead of entyvio which GI specific and doesn't treat SpA.

The GI jumped on board and although we were rejected initially by insurance the GI did a peer to peer during the appeal and got it approved for 2 years! Woohoo! Hopefully it'll get FDA approval and be out way before that.

So it was a big mess with our specialty pharmacy and I spent a week on the phone between the pharmacy and the patient assistance program for hours each day.

I would initially be told by the pharmacy that the med loading doses would be 40 dollars. Then when they'd dig deeper they'd first have to get clarification on the dose because it was so high then the first time they said without patient assistance the loading doses out of pocket would be close to 100,000.00. After that it would always start with 40 dollar then 68,000.00 dollars. Patient assistance program has a yearly limit of 20,000.00 max so they are still rejecting but finally someone figured it out and our copay was 40 dollars for the loading doses.


The meds came today! It's 3 90 mg/ml shots on day 0, 1 90 mg/ml shot on day 30 then 90 mg/ml shot every 8 weeks.

I'm waiting for a call tomorrow from GI nurse to ensure we have everything right and that it's okay for him to start.

I was so excited that this got approved. C's GI and the nurse were freaking awesome. They really fought for this every step of the way and even said they'd try the compassionate relief route if this failed. We're practically outta meds that treat CD and SpA so I'm really hoping this it.

C will be 20 in less than 2 months. I loathe the day we have to move from his ped GI! I find myself already grieving this.

Anyway, I'll post his Stelara journey here in case anyone else goes this route.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-26-2016, 07:55 PM   #2
my little penguin
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So glad it worked out
I hear ya on crohns /JSpA combo meds
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DS - -Crohn's -Stelara
07-26-2016, 07:57 PM   #3
Maya142
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So excited for you!! I hope it's C's miracle drug !!

We are also watching Stelara trials carefully. It was filed for approval 11/15, so should hopefully be approved for Crohn's later this year (for adults of course).
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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
07-26-2016, 08:43 PM   #4
Tesscorm
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What a battle! So glad you had his GI and nurse fighting for you as well! It certainly doesn't sound like it came easy!

And, great that you were aware of the phase III trials! I'm sure C's GI's respect for your knowledge helped get him into your corner! Since my father's been sick, I've really found that medical staff really do go the extra mile when they see strong family involvement and advocates.

Lots of wishes that this works for C! I really hope this is it for him!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-26-2016, 09:13 PM   #5
CarolinAlaska
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I hope this does the magic your son needs!
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
07-27-2016, 11:14 AM   #6
Sascot
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Best of luck! Really hope it does work great
07-27-2016, 11:18 AM   #7
Clash
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Now I absolutely have to shine the light on maya142! She is the one who talked about stelara and the phase III trials.

I swear this disease would seem insurmountable without the support, information, experiences of this forum and especially the Parents section! You all truly rock!
07-27-2016, 11:42 AM   #8
kimmidwife
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Glad to hear you got the approval! Keep us posted on how he is doing!!!!
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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.
07-27-2016, 11:52 AM   #9
Maya142
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Very glad it worked out ! Can't wait to hear you say that C feels GREAT!
07-27-2016, 12:04 PM   #10
pdx
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I'm so glad you were able to make this happen, and I hope it works really well!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-27-2016, 09:43 PM   #11
Farmwife
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I'm glad he got it.
I will be following this thread with interest.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-27-2016, 10:21 PM   #12
FrozenGirl
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Yay! Also following as my GIs next choice is Stelara but it isn't approved here so I'm waiting until it is.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
08-06-2016, 07:33 AM   #13
Clash
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So it's been about a week since we took the first loading dose.

3 shots 90 mg each.

He used the synera patches(left them on about 40 mins before shots). He let the shots sit out for about 30 minutes.

The shots could be given top of thighs or tummy. C refuses top of thighs so tummy it has always been. The shots need to be administered 2.5 inches in either side of belly button and not all on one side at the 45° angle.

He came home to do the shots the first time so I could make sure all was done right and you know just watch him because of it being a new med.

All went well. He said on a scale the pain of the stelara shot was nowhere near that of humira and maybe one step above the painless mtx injections.

The med did kind of create that med "lump" at the site but the med dissipated quickly.

He is supposed to be getting blood work (nailing him down to go ughhhhh!) to start sulfasalazine as well for his axial joints. I don't have much hope it'll help but fingers crossed!
08-06-2016, 10:09 AM   #14
lgpcarter
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I did Stelara for a while and was on 90mg shots. Can't remember the intervals now, but I think it was 8 weeks as well. It did work for me, just now quite enough to get me into remission Hope it works for him!

I found the shots much much much easier than Humira, which was starting to make me pretty anxious when I had to do it weekly. Didn't have any side effects from it either.

Fingers crossed!
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
08-06-2016, 05:50 PM   #15
DustyKat
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Clash! I have missed SO much!

I am so sorry to hear that things haven’t been working out for C, that sucks.

But well done to you for getting the preferred drug! Woohoo! I hope it works fabulously well for your lad, bless him. And good to hear the loading doses went well!

Everything crossed at our end Clash!
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Mum of 2 kids with Crohn's.
08-06-2016, 06:56 PM   #16
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Sending support, Clash.
08-07-2016, 12:16 AM   #17
jonique
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[QUOTE=Clash;943602]Hey guys. I decided to start a new thread since C is starting a new med.

I would initially be told by the pharmacy that the med loading doses would be 40 dollars. Then when they'd dig deeper they'd first have to get clarification on the dose because it was so high then the first time they said without patient assistance the loading doses out of pocket would be close to 100,000.00. After that it would always start with 40 dollar then 68,000.00 dollars. Patient assistance program has a yearly limit of 20,000.00 max so they are still rejecting but finally someone figured it out and our copay was 40 dollars for the loading doses.

The meds came today! It's 3 90 mg/ml shots on day 0, 1 90 mg/ml shot on day 30 then 90 mg/ml shot every 8 weeks.




$100,000 for the loading doses? That is incredible. I am taking Stelara in Canada and each syringe is $5,127CAD. So if your son got 4 syringes for his loading doses it would be close to $25,000 in Canada. I don't understand why it would be so much more in the US??

How did he do on it? I had a bad reaction to the injection with nausea, headache, fatigue that lasted three weeks. for my next one, next week, my doc advised taking Benadryl 50 mg before injecting and then 25mg every 8 hours for two days to hopefully avoid the reaction. In between injections, I'm feeling pretty good.
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
08-07-2016, 07:03 AM   #18
Clash
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We still haven't figured out where that dollar amount came from. We're not sure if that is a glitch on the specialty pharmacy side or the payt assist side. Or is the amount was correct. We paid 40 dollars for 4 shots in the end. Payt asst rejected C because the dose was higher than the norm they approve for but it's on appeal.

The first 3 shots on day 0 went well. No side effects to speak of. He did mention fatigue after but he had a really late night the night before so we're not sure if it was that or the Stelara. His next dose is 90 mg shot on day 30 so we hope to see if the fatigue was actually from the shot or just a blip.
08-07-2016, 05:16 PM   #19
kimmidwife
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Clash,
Fingers crossed for him!!!
08-09-2016, 10:01 AM   #20
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So glad insurance issuers got sorted out. Hope Stelara works out for him for a long while!
08-09-2016, 10:11 AM   #21
ronroush7
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So glad insurance issuers got sorted out. Hope Stelara works out for him for a long while!
Amen

08-09-2016, 11:29 AM   #22
Sascot
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Hope it works great for him.
10-06-2016, 11:56 AM   #23
Clash
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C just had his reg blood work done. All looked good though it always does when it comes to reg blood work. But, this was also time for an iron panels and his ferritin is looking good so no more iron infusions for now.

He has a follow up with the GI in Nov. At that time he will have done the loading doses and 1 maintenance shot of stelara.

I had the GI nurse note that C has been experience headaches fairly often. He'll be seeing an ENT soon then possibly allergist etc.

Anyway, hope everyone has a great weekend.
10-06-2016, 12:01 PM   #24
Maya142
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How are his joints Clash? Any change since getting off Humira?

Glad the blood work looks good and Ferritin is finally up!! That's promising!

We have heard more than once that Stelara can take 6 months to work, so hang in there.
10-06-2016, 12:30 PM   #25
Sascot
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Glad things are looking good so far.
10-06-2016, 02:44 PM   #26
Clash
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Maya142, he is still complaining for back stiffness. I can't say that it impedes anything though because he's working and going and doing. We have a rheumatologist appt next Friday so I'm going to push for a MRI.

The rest of his joints seem to be doing fine. He keeps saying he has shin splints but I'm not sure how he know that's what it is. So I'm go8ng to bring that up as well.

Im really hopeful with the blood work. Ferritin has Ben low forever and no amount of iron infusions were helping but something is clicking because his ferritin and other numbers looked really good. And though his HGB has been low normal to right under normal for as long as I can remember it is now over 15 so we're ecstatic about that.

Inflammatory markers have remained the same throughout so no reliable monitoring there. In fact, all his numbers always look good. Only when we run iron panels do we get a glimpse of things awry....but not this time! Yay!

I'll update again after the rheumatologist appt.
10-06-2016, 03:07 PM   #27
pdx
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I agree that it's a good sign that his iron numbers are good--thanks for the update!
10-07-2016, 06:24 PM   #28
kimmidwife
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Clash,
We were just discussing IBD and headaches in another group. It seems there is a link between IBD and headaches. There have been several studies showing that people with IBD experience severe headaches 68% more often then the general population.
I will find the articles.
10-07-2016, 06:26 PM   #29
kimmidwife
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Here is the first one,
https://www.hindawi.com/journals/grp/2016/6474651/
10-07-2016, 06:27 PM   #30
kimmidwife
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Number two,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4240046/
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