Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara every 12 weeks in the UK, not frequent enough?


12-22-2018, 12:02 PM   #1
Chica
 
Join Date: Jul 2013

My Support Groups:
∑ Stelara
Stelara every 12 weeks in the UK, not frequent enough?

Hi. Has anyone else in the UK found it frustrating that Stelara is currently only given every 12 weeks? I'm noticing a drop in the affects of the drug 8 weeks in & I started on it a year ago. I was on Remicade (Infliximab) for 5 years before that but then I developed a huge skin reaction to it. I do find Stelara works better than Remicade for sure & I am side affect free with it but I wonder if (as some older threads discuss) my body may be metabolizing the drug quickly, leaving less drug in my system than is expected. When I was on Remicade I had to drop to every 7 weeks instead of every 8, so maybe I'll have to do the same with Stelara? Has anyone else in the UK had this issue & managed to get a more frequest dose? I am not on any other meds. I think they may combi me with MTX if necessary. Not sure what's better, more frequent Stelara doses or combi meds?
12-24-2018, 08:05 PM   #2
Merv S
 
Merv S's Avatar
 
Join Date: Sep 2013
Location: Australia

My Support Groups:
Hi Chica,
The protocol may be a little different in the 'Land Down Under', but I was kicked off post the initial infusion on 90 mg x 2 monthly injections. In the last two weeks of that cycle I found that there was a marked increase in trips to the loo.

My gastroenterologist willingly agreed to increase the frequency of dosage to 6 rather than 8 weeks. At present we are awaiting authorization for this to happen.

Hopefully, they same will happen with you. Personally, I try to keep the amount of medication I take to a minimum simply because I have other medical issues aside from Crohn's and my age is factor for consideration when it comes to excreting substances from the system. I wouldn't be too keen to combine MTX if it could be avoided.

Just guessing, but I suspect that you were prescribed 12 weekly doses came down to financial considerations!
Cheers & Happy Christmas
Merv
12-26-2018, 11:20 AM   #3
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
∑ Stelara
It wouldn't surprise me if a 12 week dosing schedule were insufficient. It's 8 weeks in the US, and like some others I notice an uptick in symptoms after 6 weeks. There appears to be a subset of patients who require Stelara every 4 weeks. In the US these patients are often able to get on a 4 week schedule, but it often takes some significant amount of arguing with the insurance company by the doctor.
12-26-2018, 01:13 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
I. The US every 12 weeks is for psoriasis and psoriatic Arthritis
At a lower dose .
Most patients with PsA donít see much improvement woth the arthritis side of things
Standard Crohns dose here is 90 mg every 8 weeks
Ds takes 90 mg every 4 weeks and the difference is amazing for his arthritis (Jia) and Crohns
Every 8 weeks was not enough for him

Good luck trying to get it every 8 weeks
__________________
DS - -Crohn's -Stelara -mtx
12-27-2018, 03:21 PM   #5
Chica
 
Join Date: Jul 2013

My Support Groups:
∑ Stelara
Hi Chica,
The protocol may be a little different in the 'Land Down Under', but I was kicked off post the initial infusion on 90 mg x 2 monthly injections. In the last two weeks of that cycle I found that there was a marked increase in trips to the loo.

My gastroenterologist willingly agreed to increase the frequency of dosage to 6 rather than 8 weeks. At present we are awaiting authorization for this to happen.

Hopefully, they same will happen with you. Personally, I try to keep the amount of medication I take to a minimum simply because I have other medical issues aside from Crohn's and my age is factor for consideration when it comes to excreting substances from the system. I wouldn't be too keen to combine MTX if it could be avoided.

Just guessing, but I suspect that you were prescribed 12 weekly doses came down to financial considerations!
Cheers & Happy Christmas
Merv
Thanks for that, I'm seeing my Consultant next week so I will talk it through. Happy Festive season to you too : )
03-11-2019, 06:24 PM   #6
GI Jane
Senior Member
 
GI Jane's Avatar
 
Join Date: Jan 2017
Location: Yakima, Washington

My Support Groups:
∑ Stelara
It wouldn't surprise me if a 12 week dosing schedule were insufficient. It's 8 weeks in the US, and like some others I notice an uptick in symptoms after 6 weeks. There appears to be a subset of patients who require Stelara every 4 weeks. In the US these patients are often able to get on a 4 week schedule, but it often takes some significant amount of arguing with the insurance company by the doctor.
I was wondering how your doing now that you've been on it for awhile. I was told today by my doctor I would have a half hour infusion then injections but that is it on my intel. Do you do your shots? I couldn't do my Humira shots alone since the burning was like shooting lava into your body and my fight or flight said noooo. So single now and have to give my own B12 shots so is it any worse than that? Hate to go to VA just for a shot. Is the shots every 8 weeks to start after infusion? Any side effects to look out for beside the brain disease and death lol? Thanks
03-12-2019, 11:48 AM   #7
Scipio
Senior Member
 
Scipio's Avatar
 
Join Date: Oct 2015
Location: San Diego

My Support Groups:
∑ Stelara
So far Stelara has been very easy. Injections are easy to do by myself and not painful. No side effects so far either.

The only complaint I have about Stelara is the outrageous retail cost that makes some insurance companies balk at covering it. But if you have employer-provided insurance and qualify for the Janssen $5 copay plan, it's great. It will get a lot more expensive for me when I retire and go on Medicare.
Reply

Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Stelara every 12 weeks in the UK, not frequent enough?
Thread Tools


All times are GMT -5. The time now is 05:36 PM.
Copyright 2006-2017 Crohnsforum.com