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Stelara(ustekinumab) anyone?

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Crohn's Disease
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Posted 11/30/2016 5:11 PM (GMT 0)
Also, Stelara is on BCBS formulary at least. AND if you are going through a corporate private insurance company, the pharmaceutical company has a co-pay program. Just $5 per injection! I am just waiting for the pre-auth to go through!!!
Posted 12/7/2016 7:11 PM (GMT 0)
I have the approved Stelara waiting for me. I have had Crohns for 30+ years but asymptomatic until almost surgery time: 3 ileocolic resections. But now have a reopened perianal fistula that was closed for almost 10 years, sigh. Still not sure about Stelara because of the cancer side effects. Has anyone thought about the risk of cancer? I was told it was lower than with other biologics but recently read that it had a 15 factor higher; which confuses the heck out of me.


Best wishes for great health to everyone and any feedback would be wonderful!

Thank you
Posted 12/22/2016 6:01 PM (GMT 0)
I'm getting my initial infusion of Stelara today.

Hopefully this one does something - Humira, Remicade and Entyvio have all done nothing for me so far.

As bad as all the GI issues are the worst part for me is the crippling fatigue, joint pains and muscle weakness. It's crazy just how limited you are from all this.
Posted 12/22/2016 9:48 PM (GMT 0)
I hope your treatment goes well and you find great relief.

Please keep me posted on your success, and if I take my infusion, I'll do the same.

Best!
Posted 12/22/2016 11:38 PM (GMT 0)
Start Stelara 1/4/17 after failing, Remicade, Humira, Entyvio, and Cimzia in a short span of 5 years. Crossing my fingers cause I think this is the last option for now.
Posted 12/26/2016 6:57 AM (GMT 0)
After failing Remicade, Humira, Cimzia, and Entivyo I just had the loading IV dose of Stelara on Friday (12/23). Feeling even worse than prior to the IV now so hoping this is a short term set back. Anyone else have this initial reaction?
Currently on 10mg of Prednisone until I get some relief. Going 10x a day 2-3 at night.
Thanks.
Posted 12/27/2016 1:54 AM (GMT 0)

JF181 said...
I'm getting my initial infusion of Stelara today.

How are you feeling JF181?

Posted 1/10/2017 8:56 PM (GMT 0)
How is everyone doing with their first infusion?
I'm still waiting for mine to be scheduled.
Posted 1/11/2017 6:38 PM (GMT 0)
Just tagging along, I want to hear how everyone's is doing
Posted 1/11/2017 7:05 PM (GMT 0)
Does anyone have cancer concerns or know of anyone who has had cancer upon using a biologic?
Posted 1/18/2017 4:24 PM (GMT 0)
I failed Remicade, Cimzia, Humira, and now Entivyo. (sigh) Insurance won't cover Stelara as it is "Experimental and unsubstantiated".
Posted 1/18/2017 5:46 PM (GMT 0)

ZiggyZagnut said...
I failed Remicade, Cimzia, Humira, and now Entivyo. (sigh) Insurance won't cover Stelara as it is "Experimental and unsubstantiated".

Are you sure about it being experimental? The FDA approved Stelara last year for Crohn's.

If you appeal their decision then you probably have a good chance of winning the appeal.

I'd get your GI's office involved in the appeal and also your states insurance regulators.
Posted 4/27/2017 10:09 PM (GMT 0)
How soon did you see results?
I got my first IV infusion wed, I have not seen any difference thus far. I've had crohns for 30 years

Fernando said...
Yes I participated on a Stelara clinical trial 9 years ago and it worked extremely well.

Read this post:
https://www.healingwell.com/community/default.aspx?f=17&m=3553082

I tried to get prescribed Stelara off label but it was not available through the researcher. for Crohns patients. Was told to wait until Stelara is released for Crohns at the end of 2016.

The current 80 mg dose four times a year for Psoriasis is not enough (by injection). The most effective dose was at around 400 mg through infusion which is what will probably be released.

Currently I am on Imuran and Remicade which is mildly working. As soon as Stelara is available I will get on it asfast as I can.

Post Edited (Sassml) : 4/28/2017 6:03:14 AM (GMT-6)

Posted 4/28/2017 1:10 AM (GMT 0)
My results for pain management and being happy were instantaneous!!! After my infusion I went home a worked around the house and was so happy and Not tired! I'm low on iron and Vit d and still on 10mg of pred . Can't get down to five mg , I really bleed. It's been 6 weeks on Stelara, my next shot is 5/9/17 I have failed everything, this by far with the pred has been amazing for me!!!!
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