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?
Stelara every 12 weeks in the UK, not frequent enough?
- Thread starter Chica
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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
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
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.
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I. The US every 12 weeks is for psoriasis and psoriatic Arthritis
At a lower dose .
Most patients with PsA don’t 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
At a lower dose .
Most patients with PsA don’t 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
Thanks for that, I'm seeing my Consultant next week so I will talk it through. Happy Festive season to you too : )
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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
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.
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.
Hey. I'm still side effect free which is great & my husband does the injection for me & it feels really easy, & not that painful at all. However, I am still struggling with that period of weeks 8 to 12 where I could do with having the drug at 8 weeks instead of 12. Still pushing my Doc on it but not got anywhere yet! Will keep trying! Hope your meds are working out ok for you.
I'm on 8 week cycle started last spring, the guideline standard I'm told.
I've noticed the symptoms return roughly half way through between 4-6 weeks. My consultant has asked me to start recording the dates of attacks. In the UK they need to re-apply for more funding with justification if the dose rate goes outside the 8 week guidelines.
My consultant also said she attended a conference recently that showing research that Stelera often needs more regular dose then the current guidelines of 8 weeks. But it was just one study so not enough to sway the establishment just yet.
I've noticed the symptoms return roughly half way through between 4-6 weeks. My consultant has asked me to start recording the dates of attacks. In the UK they need to re-apply for more funding with justification if the dose rate goes outside the 8 week guidelines.
My consultant also said she attended a conference recently that showing research that Stelera often needs more regular dose then the current guidelines of 8 weeks. But it was just one study so not enough to sway the establishment just yet.
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My son had to move to every 4 weeks after the first year. It made a difference and as you can see in this thread, it appears to be that way quite often so 12 seems too far out. You can ask to have your blood levels of Stelara tested at 11 weeks after injection to see if they are too low and perhaps that will help you to justify it more often. Good luck.
I ceased using Stelara about a year ago,For some reason, financial I suspect, my GI altered his stanch on 6 weekly injections. Since then, for some miraculous reason, I have entered a state of semi remission. Apart from ceasing smoking some five years ago and taking 200 mg Tramadol nightly for unrelated PVD ( severe lower leg cramps) nothing has changed in my medication of life style. It is baffling. Perhaps when you reach 75 years Dr Chrohn gives up on you!!! If I knew the reason for this, I would be delighted to share it with you.
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Yup. It seems like every 4 weeks is becoming the standard. 8 weeks is too far out.
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My daughters are both on 8-week cycle Stelara and notice symptoms around the beginning of week 7. There is a blood test to test the amount of drug on board that you take 2 days before your next scheduled injection. We are in progress of getting that done. If it is too low then GI doc will revise prescription for a more frequent dose. Hard to believe anyone thinks a 12-week frequency would even work.
