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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara Support Group


 
07-30-2014, 10:51 AM   #31
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Stelara is not an anti-TNF biologic - it is directed against interleukins 12 and 23 (which are involved in activating T cells).

I'm not on this, but I have until next week to decide between this and Entyvio. I am on LDN at the moment (have to love my gastro for letting me try it), and while it is helping, it isn't helping enough (my last scope didn't look so great). While Entyvio has been approved for Crohn's and Stelara has not, my gastro has a fair number of patients on Stelara (he told me to expect a battle with insurance, though he's only had one patient whose insurance still refused after appeals) and none on Entyvio (though that was as of my last appointment with him a month ago).

Always fun when the doctor leaves the choice to you...

(not actually complaining)
07-30-2014, 01:37 PM   #32
ronroush7
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I hope my insurance will help.
07-30-2014, 07:59 PM   #33
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Our primary insurance is covering it with a $75 copay per injection. Did our third loading dose last week and now go to every 8 weeks. Finger, toes and eyes (if it would help) crossed.

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
07-30-2014, 09:19 PM   #34
ronroush7
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Every twelve weeks.

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07-30-2014, 10:14 PM   #35
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Claire's a pediatric patient. We will be every 8.
07-31-2014, 10:33 AM   #36
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My daughter has been on Stelara for over a year now and is doing great! She has been on all other biologics in the past that have failed. She just recently had her ileostomy reversed because her colon was finally not so inflamed! She has had no complications while being on Stelara and I give her the injections myself every eight weeks. My insurance is also covering it, so we pay just the $100/copay.
07-31-2014, 10:43 AM   #37
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My daughter has been on Stelara for over a year now and is doing great! She has been on all other biologics in the past that have failed. She just recently had her ileostomy reversed because her colon was finally not so inflamed! She has had no complications while being on Stelara and I give her the injections myself every eight weeks. My insurance is also covering it, so we pay just the $100/copay.



Your post has MADE my day!
07-31-2014, 10:51 AM   #38
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I am glad Julie!! I really and truly hope that Stelara works for your daughter as it did mine!! xoxo
07-31-2014, 11:06 AM   #39
ronroush7
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Amen
08-06-2014, 08:23 PM   #40
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My insurance refused me, so I am getting it free from Janssen at the moment. That is until May of next year, apparently, so hoping that it will be approved for Crohn's in Canada by then.

I am doing 90 mg every 8 weeks. Seems to be working. See my GI in a month, so will see what the bloodwork says. Hoping to get my CRP down. Down to 10 mg of pred (today) and am desperate to get off the stuff. I've had issues getting off before, but hoping against hope that this time will be different.
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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 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
08-07-2014, 10:39 AM   #41
ronroush7
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That is great news.
08-18-2014, 11:18 PM   #42
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I'm doing my first dose of stelara tomorrow. I'm already on one immune suppressing injectable drug for ms kinda freaked out to adding another one. Here's to more needles!!! Weening of off pred at 25 mg right now will keep you posted!
08-19-2014, 08:39 AM   #43
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I'm doing my first dose of stelara tomorrow. I'm already on one immune suppressing injectable drug for ms kinda freaked out to adding another one. Here's to more needles!!! Weening of off pred at 25 mg right now will keep you posted!
I hope it goes well, Chocolatechick! Claire is also on Methotrexate. So we call it double-trouble. :-) But so far, we have not noticed any unusual side effects with the addition of Stelara. Keep us posted!

J.
08-19-2014, 10:14 AM   #44
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What is methotrexate and why do some people do both?
08-19-2014, 04:10 PM   #45
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Methotrexate is an immune suppressant as well. Typically patients start with 6MP or Azathioprine when they have IBD. Claire couldn't tolerate 6MP. Also, she has JRA and Methotrexate is used more in RA to help prevent joint damage. So between the intolerance to 6MP and the arthritis, we've gone with methotrexate. Unfortunately, it hasn't been enough on it's own to suppress the Crohn's disease.

You may read about a lot of folks using either 6MP or Azathioprine in addition to biologics like Remicade, Humira, etc. They suppress the immune system in general and aren't as targeted as the biologics. Some people take them to prevent building antibodies to the biologic (like Remicade). When those aren't options, Methotrexate often comes into play.

We are hoping that if the Stelara helps Claire achieve remission that we will be able to drop the Methotrexate and exclusively use the Stelara. Thats my plan (and the GI's too ) if Stelara works for her.

Hope that makes sense. If not, there are folks that can speak much more scientifically and give you a more detailed explanation! Let me know and I'll tag them if you need more.

J.
08-20-2014, 12:01 PM   #46
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Methotrexate is an immune suppressant as well. Typically patients start with 6MP or Azathioprine when they have IBD. Claire couldn't tolerate 6MP. Also, she has JRA and Methotrexate is used more in RA to help prevent joint damage. So between the intolerance to 6MP and the arthritis, we've gone with methotrexate. Unfortunately, it hasn't been enough on it's own to suppress the Crohn's disease.

You may read about a lot of folks using either 6MP or Azathioprine in addition to biologics like Remicade, Humira, etc. They suppress the immune system in general and aren't as targeted as the biologics. Some people take them to prevent building antibodies to the biologic (like Remicade). When those aren't options, Methotrexate often comes into play.

We are hoping that if the Stelara helps Claire achieve remission that we will be able to drop the Methotrexate and exclusively use the Stelara. Thats my plan (and the GI's too ) if Stelara works for her.

Hope that makes sense. If not, there are folks that can speak much more scientifically and give you a more detailed explanation! Let me know and I'll tag them if you need more.

J.
Thank you! And yes totally makes sense. I've heard this drug mentioned in the MS world too so was curious how it worked with other drugs! I really hope stelara works for Claire! So hard to see your child suffering I'm sure. I had my first stelara injection yesterday. Fairly Uneventful slight headache and sore throat but nothing major.
08-26-2014, 09:39 PM   #47
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Add my kid to the list of now trying Stelara ( ustekinumab) Doc just got her on a trial here for kids in Canada. This doesn't work it is surgery - permanent ostomy. Hoping this is the miracle I need it to be!
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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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08-26-2014, 09:53 PM   #48
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👍👍👍 thinking of y'all!!!
09-01-2014, 10:22 AM   #49
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Recently, my doctor asked me if I thought the Stelara was working. I said I wasn't sure. I have only had two shots. Is that enough to really judge if it is working?

2
09-01-2014, 10:24 AM   #50
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I think it take more than just the two shots to really tell. It does work though! My daughter was on every other med out there, and has been on Stelara for a year and a half or so, and her colon looks so much better!!
09-01-2014, 11:10 AM   #51
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mugs when did you start to notice the difference that it was working?
09-01-2014, 11:38 AM   #52
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I'm doing my third injection today, I'd say yes it is working but being cautiously optimistic because I am still on 15mg of prednisone but in the last week I've had no pain or diarrhea when this used to be a daily occurrence even on prednisone. I've also noticed a big improvement in urrgancy Will keep everyone posted as I'm weening off the prednisone and will be done in two and a half weeks. Thank god cause I hate that stuff! It's a wonder my family is still alive!
09-01-2014, 07:47 PM   #53
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I would say about 6 mos in or so. She gets 90mg every 8 weeks!
09-21-2014, 04:11 PM   #54
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Just checking in to see how everyone is doing? Off the prednisone, Chocolatechick?

First maintenance dose last week and I am cautiously optimistic. CRP was still high at 51 at last appointment, which was discouraging, so I am having it checked monthly and going back at end of October for another appointment. My white blood cell count was also a bit elevated.

My B12 was also quite low (can't remember number) so doing monthly shots for 3 months and then every 3 months to bring it back up.
09-21-2014, 04:48 PM   #55
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Had our first maintenance dose but fcp back up to 797. More labs in 3 weeks - doc says he feels like we should be seeing positive change with this dose or next.
09-21-2014, 10:45 PM   #56
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Yes lgpcarter, off the prednisone. Seem to being doing pretty good on Stelara, fairly reg BMs not much pain just still have a problem with urgency better than before at least when I only had about 1 min to get to a bathroom I have about 10 min max now better but still very inconvenient I'm also having a lot of muscle aches and congested sinuses not sure if this is a side effect or not. What is CRP?
09-21-2014, 10:49 PM   #57
AZMOM
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Yes lgpcarter, off the prednisone. Seem to being doing pretty good on Stelara, fairly reg BMs not much pain just still have a problem with urgency better than before at least when I only had about 1 min to get to a bathroom I have about 10 min max now better but still very inconvenient I'm also having a lot of muscle aches and congested sinuses not sure if this is a side effect or not. What is CRP?

Measures inflammation. http://labtestsonline.org/understand.../crp/tab/test/
10-20-2014, 08:41 AM   #58
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Specialist wants me to have a bigger dose within a shorter span of time.

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10-20-2014, 08:43 AM   #59
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ronroush7 What is your dose/interval now?
10-22-2014, 10:00 AM   #60
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I was on 45 mgs every 12 weeks. Now it is 90 mgs every 8 weeks. Hope it helps.

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