Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara every 4 weeks!


 
06-12-2017, 08:54 AM   #1
Sophiavictoria
 
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Stelara every 4 weeks!

Hello everyone hope you are all doing great!!!! I started stelara back in December of 2016. I must say it gave me some relieve at first but now I don't make make to 8 weeks. Therefor my doctor wants to try every 4 weeks!!!! Have any of you try every 4 weeks. I'm a little concern. Also worth mentioning I've been on remicade and humira with no success. Any feedback would be great
06-12-2017, 08:58 PM   #2
Pam48
 
Join Date: May 2013
I am just on my first shot after the infusion. What to you have to lose by trying it every 4 weeks? I can't think of any cons.
06-13-2017, 04:21 PM   #3
ronroush7
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I agree.
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08-21-2017, 06:34 PM   #4
AJM
 
Join Date: Aug 2017
Hello everyone hope you are all doing great!!!! I started stelara back in December of 2016. I must say it gave me some relieve at first but now I don't make make to 8 weeks. Therefor my doctor wants to try every 4 weeks!!!! Have any of you try every 4 weeks. I'm a little concern. Also worth mentioning I've been on remicade and humira with no success. Any feedback would be great
I started Stelara in April 2017. The drug has clearly helped, but I am not getting the full effect. My Doctor asked me to take a special blood test which checks the Stelara levels. If the results show that my levels are low, they are likely to put me on it every 4 weeks as well. They have also started me on methotrexate to try to slow the metabolism of the drug. Not sure if these are options for you. Good luck!
08-22-2017, 11:36 PM   #5
newdiagnosis
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Wow AJM. That is very interesting. At what center do you get treatment? Sounds advanced.
09-08-2017, 03:20 PM   #6
AJM
 
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Just an update for everyone. My levels of Stelara came back non-existent after 8 weeks, which suggests that my body is quickly metabolizing the drug. My doctor thinks it is out of my system in 2-3 weeks. I have checked various studies on the effectiveness of Stelara and it appears that at week 26 you need to have levels of 4.5ug/ml to be in remission. So if your levels are low (or non-existent like mine), you will not get the benefit of the drug. I am curious as to why this is the case (and so is my doctor), but hopeful that increasing the dose to every 4 weeks will help.

Sophiavictoria - any luck with the 4 week infusions?
09-12-2017, 12:50 AM   #7
newdiagnosis
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I spoke with my doc about stelara levels. Only one center does it in the US. Will need to figure out whether my insurance will pay for it. Also, she said that since stelara is so new, there is really no established baseline for what a therapeutic stelara drug level actually is. Any thoughts on whether insurance companies pay for this drug level?
09-12-2017, 06:05 AM   #8
AJM
 
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[QUOTE=newdiagnosis;988254]I spoke with my doc about stelara levels. Only one center does it in the US. Will need to figure out whether my insurance will pay for it. Also, she said that since stelara is so new, there is really no established baseline for what a therapeutic stelara drug level actually is. Any thoughts on whether insurance companies pay for this drug level?[/QUOTE

I do not think they do. My doctor was running a study so was able to pay for it. If I want it done in the future it is about $300. No different than my experiences checking my levels of Humira.
09-17-2017, 06:56 PM   #9
hredner
 
Join Date: Aug 2016
Location: Nashville, Tennessee
Hello everyone hope you are all doing great!!!! I started stelara back in December of 2016. I must say it gave me some relieve at first but now I don't make make to 8 weeks. Therefor my doctor wants to try every 4 weeks!!!! Have any of you try every 4 weeks. I'm a little concern. Also worth mentioning I've been on remicade and humira with no success. Any feedback would be great
I started Stelera Nov 2016- first did the iv infusion followed by injections every 8 weeks, they moved me up to every 6 weeks because my disease was spreading despite the Stelera. It seems to help some but not enough! Trying to be patient.
09-18-2017, 11:22 PM   #10
newdiagnosis
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hredner, how did you get approval for increased dosing of stelara? Any input might be appreciated as I might need to do the same.
02-06-2018, 04:44 AM   #11
crampygut
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Hi guys

Just wondering if any of you that have switched to Stelara every 4 weeks has seen an improvement in their symptoms? I have been on Stelara for 6 months and a recent colonoscopy showed that I still have lots of ulcerations so my doctor wants to move me to Stelara every 4 weeks. Just wondering if anyone has had a better response.

Regards
Michael
02-06-2018, 12:56 PM   #12
aypues
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I had no detectable drug level on the 8 week dosing schedule!!
They did an IV reload on me a month ago, and yesterday was my first subq 4 week dose. Hope to report back with good news in 6 months time.
02-07-2018, 06:40 PM   #13
crampygut
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Best of luck hope it works better this time around


02-13-2018, 09:24 PM   #14
Halfgut
 
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Been on stelara for 2+Years started before fda approved. Doc is wanting to increase dosages to 6 wks from 8 wks, had blood work done mentioned above and had similar results, however INSURANCE will only allow so many doses per year, make sure to verify before accepting this plan, just a tip. Good luckluck
02-17-2018, 02:12 PM   #15
aypues
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how long does Stelara take to work? 4-6 months??

I am flaring after IV reload 6 weeks ago, and 1st initial 4 week dose 2 weeks ago. I clear drugs very quickly apparently. We went to Entocort to buy some time.

I really feel Remicade worked better for me - at least there was no pain, but my MRI and double balloon enteroscopy showed active disease. Some others like Cimzia, but it doesn't seem as common. I am so drained of energy after this flare!!
02-17-2018, 02:27 PM   #16
woops!
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My doc has decided to have me take it every 6 weeks. According to him this is my last med as I have failed everything else. I have been on it now for a year. Thanks for the info on checking to see if insurance will only give me so many doses a year. I hate this disease!
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02-19-2018, 12:56 AM   #17
newdiagnosis
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How did you all get more frequent dosing approved? My doc is having a really hard time having this approved.
02-20-2018, 01:47 PM   #18
aypues
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How did you all get more frequent dosing approved? My doc is having a really hard time having this approved.
I think it's a combination of showing them how bad your case is (MRI and scopes), your current Stelara level (Anser UST test), and threatening them a bit with hospitalizing you otherwise.
02-22-2018, 12:14 AM   #19
newdiagnosis
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How soon after starting stelara did you need a colonoscopy? It's been about 7 months after stelara. My symptoms are resolved and my knee swelling is resolved. Is it absolutely necessary to have this colonoscopy, or can I delay it?
02-27-2018, 09:54 AM   #20
crohner000
 
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I was moved to every 4 weeks when it seemed like Stelara at every 8 weeks was helping a little bit but not enough. HOWEVER, I did not get to stay on the 4wk dosing for long enough to find out if it worked because the approval for the increased dosing expired after 4 months and my doctor has had a bit of a hard time getting me re-approved.

After a long lapse in medication, I finally was able to get a second loading dose (infusion) this week, and now I am approved for 8 week injections, but appealing to get that 4 week dosing back.

I have a specialty pharmacy who delivers the injections right to my house, and because they got the orders so routinely I became a bit lazy in keeping track of my dosing, so it took me a little longer to realize that I was behind. The insurance companies really seem tough on approving this drug, so my advice especially when you're talking about an increased dose is just to stay on top of everything and be really vigilant in the process.
02-28-2018, 01:42 AM   #21
CeeCeeGo
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My journey so far with Stelara...

Had proper flu & pleurisy just before Xmas. 3 weeks before getting flu had large loading dose of Ustekinumab. At about 6 weeks after infusion daily bowel movements had gone down although lots of nausea and bloating. Had first 8 week injection of Ustekinumab. Two weeks after first jab started to flare and FCP test went from 93 at 8 weeks to 300 at 12 weeks. Consultant decided to give an additional injection at 12 weeks but still flaring at the moment. Next injection due at 16 weeks and then we decide if it is working.

Not sure if 16 weeks is long enough to decide whether it is working?
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DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Stelara (Nov 2017), Budesonide (when required), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
02-28-2018, 07:52 AM   #22
my little penguin
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Stelara typically takes 6 months to work unfortunately
Ds just had scopes at 6 months and showed mucosal healing in the TI
Still trying to get Stelara approved for every 4 weeks
Due to arthritis flares
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02-28-2018, 10:48 PM   #23
CeeCeeGo
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Hi MLP
When I saw my consultant last week and we talked about my flare, he seemed to be saying that if I take steroids for this flare there is no point in continuing with the Stelara. Itís a new drug here in the UK and they havenít worked out the various dosing options yet. As I do not seem to have responded to this extra injection at 12 weeks, I think they will pull it.
02-28-2018, 10:55 PM   #24
my little penguin
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Ds was on steroids for arthritis flare from April 2017 till dec 2017
Started Stelara in August
All the literate in the US states minimum of 6 months to be fully effective
At 90 mg every 8 weeks

Similar to remicade needing 6 weeks
Humira 3-5 months
The newer drugs like Stelara work further up the immune system so it takes longer to block things per GI

Most require a bridge of steriods till the med (any med ) is fully effective
Ds has for remicade
Humira
Mtx etc...

That said some are non responders
Ds Crohns did turn a corner around 4.5-5 months
And by time the scope very little signs of Crohns
Visually clean scope
And only one spot of inflammation that was healing per GI
Ds also had an early 3 rd shot (4 weeks after his second 8 week shot )

Right now due to arthritis
I am ready to throw in the towel since he canít get it approved for every 4 weeks.
03-02-2018, 01:10 PM   #25
newdiagnosis
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Just had my first scope 7 months after starting stelara. Scope is completely clean. Doctor said that it seems I am in remission. There is still a moderate stricture at the ileocecal valve, but nothing to be concerned. Still awaiting pathology results. But so far happy. My knees have been pretty well controlled too. I have been off prednisone for 1 month. Just want to assure everyone that stelara does take a long time to work, and just to hang in there and stay positive. While the stelara is taking time to work, it is important to be on a drug like prednisone to bridge until stelara starts working.

Wishing you all the best of Health and hopefully my experience can provide some assurance to some of you.
03-03-2018, 10:14 AM   #26
Sharkgirl
 
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Good morning everyone!
I saw this thread and wanted to share that my insurance just approved me for Stelara! My infusion is next week and I am nervous because I have tried so many other things; Cimzia, Humira, Entyvio, Remicade...Cimzia worked for a few years but stopped. I am praying that Stelara works for me because I would so much like to feel better! I have a feeling that at some point my GI will want me to do it every four weeks as well because I tend to need more medication than "normal".
04-28-2018, 01:15 PM   #27
aypues
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Stelara ended up not working for me, even with 4 week dosing and IV reload. Back to Remicade now - will be restarting in a few weeks. Hope I donít get antibodies to it.
04-30-2018, 10:53 AM   #28
Scipio
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If you've had Remicade before you may already have antibodies to it. Hopefully not.
04-30-2018, 01:16 PM   #29
my little penguin
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Yeah that ^^^^
Normally they do an antibody test for remicade prior to restarting

Tagging Maya142
Her Dd restarted remicade I believe
04-30-2018, 01:51 PM   #30
Maya142
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Yes, my daughter was on Remicade 3 separate times because we ran out of drugs (very few drugs are approved for kids). It worked the second time (with Methotrexate), but not the third. But she never had a reaction and tests never showed antibodies.
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Mom of S (23)
dx with JIA at 14
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