Stelara ustekinumab malignancy rate.

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Apr 24, 2021
Messages
216
Trying to work out the real life malignancy rates for stelara.

Have it at about 2.5 - 3% from studies,

One in 28 - 50 ish develop a malignancy, however on the official jassen Web site it claims less than 1% around 1 in 250.

I'm not sure or the mortality rate.

Anybody else researched the true numbers from the most reliable sources.

Can see there has been also legal claims from the effects of this drug.

https://www.rxinjuryhelp.com/stelara/lawsuit/
https://www.hmpgloballearningnetwor...event/results-5-year-study-safety-ustekinumab
https://www.stelarahcp.com/crohns-disease/safety-profile

https://www.sciencedirect.com/science/article/pii/S0190962217321151
If that is correct 1 in 30 or 1 in 50 surely that should have some fairly serious black box warnings?

More so than any other crohns drug maybe ?
 
IL-12 itself has an anti-tumor effect, this makes me think all the drug companies are making note of the adverse effects and lawsuits on stelara for malignancies.

Hence why skyrizi Risankizumab is focusing on IL-23.

You don't get told any of this either when you arrive with a crohns flair trying to find a solution.


Crohns cancer coronavirus

I pray one day we can say the word CURE 🙏
 
Last edited:
I have a weird pancreatic cyst/neoplasm that is probably premalignant. Was found a year or so after diagnosis. Not sure if coincidence or not. Now about 5 years after starting and wondering whether to taper and discontinue stelara. I'm not really sure that Stelara is doing much as I have not taken Stelara for about 10 weeks and still feeling well.
 
I have a weird pancreatic cyst/neoplasm that is probably premalignant. Was found a year or so after diagnosis. Not sure if coincidence or not. Now about 5 years after starting and wondering whether to taper and discontinue stelara. I'm not really sure that Stelara is doing much as I have not taken Stelara for about 10 weeks and still feeling well.
It may be coincidence…my mother has one that was found a few years ago, no ibd history and definitely no Stelara usage.

mad for feeling well since you stopped- dinner get pulled into a false sense of security, you may have residual medication still working its way out and once some more time goes by you could end up flaring again. Years (like 30) ago my doctors were of the thinking that once remission was achieved it was ok to stop all meds….until the next flare. Unfortunately the periods of remission on no meds became shorter and shorter and the severity of my disease got worse.
 
Understand dosing for psoriasis is 45 mg every 12 weeks for Stelara so it’s definitely still in your system
Crohns dose is normally 90 mg every 8 weeks
That fact your feeling well doesn’t mean the drug is not doing anything
It means it’s working
Many years ago Ds was taking 6-mp
It led to his liver enzymes being raised every time the drug got to therapeutic levels
After eight months and his liver got really irritated the Gi wanted Ds to stop immediately
Wait 1-2 weeks to get it out of his system and then start methotrexate
We all assumed 6-mp wasn’t doing much of anything since Ds typically felt bad
The two weeks with no drugs
Absolutely misery
So even less than effective drugs are doing something

Has your Gi told you to stop Stelara?
Has an oncologist told you to stop Stelara?
Is the cyst being removed ?

Ds has been on Stelara since 2017 without any issues so far
 

Latest posts

Back
Top