Stelara every 4 weeks!

[Sophiavictoria]

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

 

[Pam48]

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.

 

[ronroush7]

I agree.

 

[AJM]

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!

 

[newdiagnosis]

Wow AJM. That is very interesting. At what center do you get treatment? Sounds advanced.

 

[AJM]

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?

 

[newdiagnosis]

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?

 

[AJM]

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.

 

[hredner]

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.

 

[newdiagnosis]

hredner, how did you get approval for increased dosing of stelara? Any input might be appreciated as I might need to do the same.

 

[crampygut]

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

 

[aypues]

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.

 

[crampygut]

Best of luck hope it works better this time around

 

[Halfgut]

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

 

[aypues]

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!!

 

[woops!]

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!

 

[newdiagnosis]

How did you all get more frequent dosing approved? My doc is having a really hard time having this approved.

 

[aypues]

How did you all get more frequent dosing approved? My doc is having a really hard time having this approved.

I think it's a combination of showing them how bad your case is (MRI and scopes), your current Stelara level (Anser UST test), and threatening them a bit with hospitalizing you otherwise.

 

[newdiagnosis]

How soon after starting stelara did you need a colonoscopy? It's been about 7 months after stelara. My symptoms are resolved and my knee swelling is resolved. Is it absolutely necessary to have this colonoscopy, or can I delay it?

 

[crohner000]

I was moved to every 4 weeks when it seemed like Stelara at every 8 weeks was helping a little bit but not enough. HOWEVER, I did not get to stay on the 4wk dosing for long enough to find out if it worked because the approval for the increased dosing expired after 4 months and my doctor has had a bit of a hard time getting me re-approved.

After a long lapse in medication, I finally was able to get a second loading dose (infusion) this week, and now I am approved for 8 week injections, but appealing to get that 4 week dosing back.

I have a specialty pharmacy who delivers the injections right to my house, and because they got the orders so routinely I became a bit lazy in keeping track of my dosing, so it took me a little longer to realize that I was behind. The insurance companies really seem tough on approving this drug, so my advice especially when you're talking about an increased dose is just to stay on top of everything and be really vigilant in the process.

 

[CeeCeeGo]

My journey so far with Stelara...

Had proper flu & pleurisy just before Xmas. 3 weeks before getting flu had large loading dose of Ustekinumab. At about 6 weeks after infusion daily bowel movements had gone down although lots of nausea and bloating. Had first 8 week injection of Ustekinumab. Two weeks after first jab started to flare and FCP test went from 93 at 8 weeks to 300 at 12 weeks. Consultant decided to give an additional injection at 12 weeks but still flaring at the moment. Next injection due at 16 weeks and then we decide if it is working.

Not sure if 16 weeks is long enough to decide whether it is working?

 

[my little penguin]

Stelara typically takes 6 months to work unfortunately
Ds just had scopes at 6 months and showed mucosal healing in the TI
Still trying to get Stelara approved for every 4 weeks
Due to arthritis flares

 

[CeeCeeGo]

Hi MLP
When I saw my consultant last week and we talked about my flare, he seemed to be saying that if I take steroids for this flare there is no point in continuing with the Stelara. It’s a new drug here in the UK and they haven’t worked out the various dosing options yet. As I do not seem to have responded to this extra injection at 12 weeks, I think they will pull it.

 

[my little penguin]

Ds was on steroids for arthritis flare from April 2017 till dec 2017
Started Stelara in August
All the literate in the US states minimum of 6 months to be fully effective
At 90 mg every 8 weeks

Similar to remicade needing 6 weeks
Humira 3-5 months
The newer drugs like Stelara work further up the immune system so it takes longer to block things per GI

Most require a bridge of steriods till the med (any med ) is fully effective
Ds has for remicade
Humira
Mtx etc...

That said some are non responders
Ds Crohns did turn a corner around 4.5-5 months
And by time the scope very little signs of Crohns
Visually clean scope
And only one spot of inflammation that was healing per GI
Ds also had an early 3 rd shot (4 weeks after his second 8 week shot )

Right now due to arthritis
I am ready to throw in the towel since he can’t get it approved for every 4 weeks.

 

[newdiagnosis]

Just had my first scope 7 months after starting stelara. Scope is completely clean. Doctor said that it seems I am in remission. There is still a moderate stricture at the ileocecal valve, but nothing to be concerned. Still awaiting pathology results. But so far happy. My knees have been pretty well controlled too. I have been off prednisone for 1 month. Just want to assure everyone that stelara does take a long time to work, and just to hang in there and stay positive. While the stelara is taking time to work, it is important to be on a drug like prednisone to bridge until stelara starts working.

Wishing you all the best of Health and hopefully my experience can provide some assurance to some of you.

 

[Sharkgirl]

Good morning everyone!
I saw this thread and wanted to share that my insurance just approved me for Stelara! My infusion is next week and I am nervous :shifty: because I have tried so many other things; Cimzia, Humira, Entyvio, Remicade...Cimzia worked for a few years but stopped. I am praying that Stelara works for me because I would so much like to feel better! I have a feeling that at some point my GI will want me to do it every four weeks as well because I tend to need more medication than "normal".

 

[aypues]

Stelara ended up not working for me, even with 4 week dosing and IV reload. Back to Remicade now - will be restarting in a few weeks. Hope I don’t get antibodies to it.

 

[Scipio]

If you've had Remicade before you may already have antibodies to it. Hopefully not.

 

[my little penguin]

Yeah that ^^^^
Normally they do an antibody test for remicade prior to restarting

Tagging Maya142
Her Dd restarted remicade I believe

 

[Maya142]

Yes, my daughter was on Remicade 3 separate times because we ran out of drugs (very few drugs are approved for kids). It worked the second time (with Methotrexate), but not the third. But she never had a reaction and tests never showed antibodies.

 

[aypues]

Yeah that ^^^^
Normally they do an antibody test for remicade prior to restarting

Tagging Maya142
Her Dd restarted remicade I believe

It's actually done 2 weeks after. I asked about this. If no drug is in your system for a long time there won't be antibodies to it. It's called an "Anamnestic response" when your immune system will remember the problem and then produce the antibodies once re-exposed.

 

[newdiagnosis]

My colonoscopy 2 months ago was completely clean and was told that my crohn's is in remission. Inflammatory markers normal and no symptoms. I am scheduled for an MRI this Monday to further document remission. Do you all think that the MRI is necessary? The doctor also said it's really my call.

 

[my little penguin]

A Clean scope is great but it doesn’t show much in terms of the small intestine
Ds did both to prove that Stelara was working through the entire GI tract

 

[newdiagnosis]

Thank you for your advice. Yeah, i'll probably get it done.

 

[newdiagnosis]

A Clean scope is great but it doesn’t show much in terms of the small intestine
Ds did both to prove that Stelara was working through the entire GI tract

I got my results back from the MRI. haven't spoken with the doctor yet. I am very confused. My knee swelling resolved, no symptoms, and inflammatory markers essentially at zero. However, my MRI does not show much change from a year ago. It says there is still active inflammation. Could this be just the fibrosis that they are confusing with active disease? Also, apparently my colonoscopy was normal too. I am very confused, will wait to hear from the doctor on Monday.

 

[Anna's Bandit]

Thanks for this information.
I am not on Stelara, but I am starting this whole Humira process.
Lynda

 

[my little penguin]

Good luck with the Doc appt
Let us know
Since the MRE images different areas of the gut than the colonoscopy
You could very well have active disease
Depending how long you have been on every 4 weeks
Might make a difference
Also you could get a pill cam to see the extent of the damage visually
If you don’t have a stricture


So if it’s inflammation then that can be from active disease that Stelara isn’t covering
Or the thickening could be old scar tissue


I can say my kiddos response to Stelara is not as good as anti tnf
It took much longer to get relief on joints and gut
And they found inflammation that was healing on Stelara
Vsl non at all present on anti tnf

He just started every 4 weeks of Stelara at the end of March
So hoping the improvement continues

Let us know what you find out

 

[newdiagnosis]

yeah, I am starting to regret my choice of starting on Stelara first. I just thought it would work better and safer, but the more I see my progress maybe I am doing more damage in the long run since it is not controlling it very well. The good news though, is that if the stelara doesn't work that well, then I always have anti-TNFs to fall back on.

 

[mjimenez]

Hey! I've also lost response to Remicade and had no response to Humira. Stelara made me feel great but would lose response around week 5. Now on it every 4 weeks, been working great!!

 

[newdiagnosis]

SO i just started stelara every 4 weeks. My colonoscopy was normal, but the MRI showed a lot of active inflammation. I've been on stelara every 8 weeks for like 9 months. Today, I had an episode of vomiting and stomach pain. Rather than waiting for stelara to work, shouldn't I be on entocort? Honestly, the stelara might not be doing much. My inflammatory markers are normal, and knee swelling has resolved. However, that could be from the sulfasalazine. Not sure what to do at this point.

 

[my little penguin]

It took a few months of Stelara every 4 weeks to see improvement
But wbc is dropping a lot since starting it
Much lower than humira
So will see what docs say

 

[Mark in Seattle]

It took a few months of Stelara every 4 weeks to see improvement
But wbc is dropping a lot since starting it
Much lower than humira
So will see what docs say

My little penguin,

I have been on Stelara for 14 months and have found it helpful, but I constantly feel that the effect wears off too quickly. My doc puts stock in the fecal calprotectin test, which this time came back elevated. I had a CT scan in ER, thinking I may have partial obstruction. It showed swelling/edema. I have been asking my doc to test my blood levels of Stelara, as I suspect that I’m clearing the drug quickly. I have asked about the drug level test along with asking for possibly requesting more frequent dosing from insurance. He tells me that there is no blood test for Stelara, such as he use to give me for Humira, and he says that it’s quite hard to get insurance to approve more frequent dosing.

Just wondering if you have any suggestions on how to push the issue.

Maybe with the added joint problems, you had extra ammunition to push for 4 week dosing.

Thanks

 

[Scipio]

I have asked about the drug level test along with asking for possibly requesting more frequent dosing from insurance. He tells me that there is no blood test for Stelara, such as he use to give me for Humira, and he says that it’s quite hard to get insurance to approve more frequent dosing.

There is a blood test for Stelara offered by Prometheus Laboratories. There may be others that offer it as well.

 

[my little penguin]

Mark in Seattle
This is the paper we used

http://www.ecco-ibd.eu/publications...sease-effectiveness-of-dose-escalation-2.html


“
Conclusion
In this subset of real-life experience of UST use in patients with CD, maintenance dose escalation to 90mg every 4 weeks had a modest benefit in achieving a clinical response. This may be suggestive of the mechanism of loss of response to UST being driven by factors other than low bioavailability due to processes such as rapid clearance. Further assessment in larger cohorts as well as the use of therapeutic drug monitoring will be important to evaluate the usefulness of dose escalation for patients on UST