Share Facebook
Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » How long does it take Stelara to work?


12-30-2016, 03:39 PM   #1
Colie
 
Colie's Avatar
 
Join Date: Aug 2016
How long does it take Stelara to work?

I got my first infusion of stelara a couple of weeks ago. For those of you who have taken it, how long did it take to see improvements, if any? I saw on the website that it could be anywhere between 3-6 weeks.
12-30-2016, 03:58 PM   #2
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
I got my first infusion of stelara a couple of weeks ago. For those of you who have taken it, how long did it take to see improvements, if any? I saw on the website that it could be anywhere between 3-6 weeks.
I started taking it in April 2016. I was dealing with a stricture though which is not helped by medication. The stricture was removed in October. I take it for arthritis too and noticed the improvement in arthritis gradually with optimal treatment in September so it did take a few months. The pharmacist told me that it takes longer to get noticeable benefits than anti-tnf. It may have been longer for me as I was quite sick and stressed when I started it. I do feel the best I have in years now though so was worth the wait.

__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stelara, Cimzia, Simponi, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
12-30-2016, 05:45 PM   #3
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Jonique
Are you on the arthritis dose 45mg or the Crohns dose 90 mg ??
__________________
DS - -Crohn's -Stelara -mtx-IVIG
12-30-2016, 11:18 PM   #4
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
Jonique
Are you on the arthritis dose 45mg or the Crohns dose 90 mg ??
I am taking the arthritis dose 45 mg every 8 weeks. I will be having a colonoscopy 6 months post-op (April) and if any inflammation shows up will increase to 90 mg every 8 weeks.



12-30-2016, 11:58 PM   #5
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
I would ask sooner. All the US FDA approvals for treatment of Crohns is to start at 90mg
45 mg isnt enough
I think it's the same in Europe as well
It was just approved this past fall here with the higher recommended dose
12-31-2016, 12:06 AM   #6
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
My crohns was all removed with the surgery in October. Blood tests normal. No signs of any active crohns so my gi doctor recommended waiting until April.

03-25-2017, 12:44 PM   #7
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
My son had definitive benefits by week 8 but likely sooner. His doctor said it works pretty quickly and that benefits improve over time. His SED rate and CRP went down drastically on his bloodwork 8 weeks after his infusion dose of 360mg. He just had his first injection of 90mg a week ago. We were not given the impression that this takes longer than anti-TNF at all. Of course, everyone is unique as we know.
04-01-2017, 03:30 PM   #8
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I have just had it approved. I am in the UK and we start with an infusion then sub cut injections.
Can I ask if any of you/your children had side effects with the infusion ?
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
04-02-2017, 12:42 AM   #9
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Sounds like the same way this is administered in the U.S. My son has had no side effects at all after his initial infusion in January or his first injection in March. Best to you!
04-21-2017, 06:35 PM   #10
Feeling Hopeless
 
Join Date: Apr 2017
Location: Satsuma, Alabama
I had my first injection about a week ago and started tapering off of prednisone and started running 100.7 fever tonight 🙄 How long until I will start seeing some relief that it will work because all other treatments have failed.
04-22-2017, 08:03 AM   #11
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
I have had the infusion end now my first injection. I was very sick when I started it. I noticed some small improvements after the second week of the infusion, I am currently still dealing with diarrhea, but not as much and no blood in stool noted. So for me it has taken a while. I was told it could take up to 15 weeks to get going strong, but that it was worth it. It is difficult as you take the med then have to wait... but so far so good. The wating for it to work is hard as you still feel bad, but worth it when it gets going.
__________________
Wherever you be.... let the wind blow free!
11-04-2017, 08:41 PM   #12
newdiagnosis
Senior Member
 
Join Date: May 2017
I am on week 15 after initial infusion. It seems like it is helping the crohn's. However, my arthritis recently flared, and I am on 12.5mg of prednisone. My doctors are about to switch me to humira due to the arthritis. Anyone have any advice? Should I wait longer?
11-05-2017, 09:28 PM   #13
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
newdiagnosis - I would ask if Stelara has evidence of being less effective in patients who also have arthiritis. I know it is used for Psoriatric Arthritis. Have you had an additional injection at week 8? That is the protocol. Have you had any labs or fecal calprotectin done? If you have seen symptomatic and any positive blood/stool values, I may stick with it and see what the pred does for your arthritis. However, I am not sure if Stelara has any side effects or data that supports it can cause arthiritic flares more than Humira. I know both are used for psoriatic arthritis so it is a good question to ask. Best to you...hope they figure out the right combo for you.
11-05-2017, 09:54 PM   #14
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Ds has started Stelara in August specifically for his juvenile spondyloarthritis
(JSpA)
His JSpA was flaring on humira
His Crohns has responded quickly to Stelara
His arthritis has taken longer
That said we have seen improvement and he has weaned to 7 mg of pred and will weanmore at the end of the week

Per his rheumo all his joints have improved in terms of swelling
Now the trick will be if they stay down once he weans
Ds also started ivig as a bridge

We were told by rheumo and GI to expect anywhere from 6 weeks to 6 months to be effective

Humira took over 5 months to be effective for ds
After three months I was ready to give up
I am glad we waited
He had over 5 years on the drug still it was stopped for surgery (not Crohns related)
But didn't work for his artthritis when it was restarted

It's a very tough choice either way
11-05-2017, 11:04 PM   #15
BoyMama2000
Senior Member
 
Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Indeed these decisions are so tough because the answers are just not black and white. It is very interesting that the drugs do seem to take quite a bit longer for arthritis. My son only has Crohns and adding in another condition I am sure adds a lot more to the decision and the medication balance.
11-05-2017, 11:14 PM   #16
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Boymama2000
I think in Ds case
His Crohns was only mildly irritated when starting Stelara since he had stayed on een when humira was stopped and restarted
Unfortunately een does nothing for joints/arthritis
So the arthritis flare was pretty bad with lots of inflammation
So that may be why arthritis is taking longer
11-14-2017, 11:49 PM   #17
newdiagnosis
Senior Member
 
Join Date: May 2017
I have had one infusion and one injection 8 weeks later. At this point I am at week 16. I am thinking it might be worth to do the next injection and wait a couple more weeks. I am just worried that I have been on prednisone for around 7 months (low dose, around 7 mg daily). However, even if I switch it will take another few months until humira works. I am thinking it is probably worthwhile to try another shot of stelara since I am only on week 16. I have been able to wean down to 8mg prednisone.
11-15-2017, 05:52 AM   #18
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Good luck with the next shot

Ds had a few reasonable weeks but is back to arthritis flaring now -5 weeks out from his last shot
His ivig is due this week
He is down to 4 mg of pred
11-15-2017, 11:02 AM   #19
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
I'm getting my loading dose of Stelara in about two weeks (currently on budesonide). I sure hope the stuff works. My routine Crohn's symptoms have always been pretty mild, but I recently ran into some nasty extra-intestinal manifestations. Hence the upgrade to Stelara.
11-16-2017, 07:01 PM   #20
newdiagnosis
Senior Member
 
Join Date: May 2017
My GI doc wants to start me on humira and methotrexate ( to prevent antibodies from forming). However, if they are starting methotrexate I am wondering why not just add methotrexate to the current Stelara. The only reason they are switching me to humira is because my knees are not controlled on stelara alone. However, Stelara seems to control the GI symptoms. Should I just ask my doc to add on methotrexate to the current stelara instead of switching me to humira and methorexate. The methorexate alone should help the knees.
11-17-2017, 11:34 AM   #21
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
Should I just ask my doc to add on methotrexate to the current stelara instead of switching me to humira and methorexate. The methorexate alone should help the knees.
It can't hurt to ask. I'd be interested to hear why your doc is not considering adding methotrexate to the Stelara. Is this contraindicated for some reason?
11-22-2017, 12:57 AM   #22
newdiagnosis
Senior Member
 
Join Date: May 2017
Not sure why their not adding methotrexate to stelara. Seems like they think Humira works better for joints. I don't really want to start methotrexate though if they switch over to humira. I feel that mtx has a lot more side effects than humira.
Reply

Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » How long does it take Stelara to work?
Thread Tools


All times are GMT -5. The time now is 09:32 AM.
Copyright 2006-2017 Crohnsforum.com