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


06-12-2017, 08:54 AM   #1
Sophiavictoria
 
Join Date: Jun 2017
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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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
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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Join Date: May 2017
Wow AJM. That is very interesting. At what center do you get treatment? Sounds advanced.
09-08-2017, 03:20 PM   #6
AJM
 
Join Date: Aug 2017
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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Join Date: May 2017
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
 
Join Date: Aug 2017
[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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Join Date: May 2017
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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Join Date: Nov 2006
Location: Melbourne, Australia
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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Join Date: Mar 2013
Location: San Diego, California

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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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Join Date: Nov 2006
Location: Melbourne, Australia
Best of luck hope it works better this time around


02-13-2018, 09:24 PM   #14
Halfgut
 
Join Date: Feb 2018
Location: Hilton Head, South Carolina
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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Join Date: Mar 2013
Location: San Diego, California

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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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Join Date: Apr 2010
Location: Virginia
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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Today, 12:56 AM   #17
newdiagnosis
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Join Date: May 2017
How did you all get more frequent dosing approved? My doc is having a really hard time having this approved.
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