I hope it does work for you.I started Stelara 2/2/16, after Humira stopped working and Entiviyo did nothing. I just got out of the hospital with another bad flare and small bowel obstruction. I came home and injected #3. The doctor added Entocort to try and reduce the inflammation. I met with the surgeon yesterday and scheduled a resection 4/28. This was my 11th hospitalization for obstructions. The scarring is there and has to come out. Not sure Stelara is going to work for me.
I am on a small dose of prednisone, my doctor wants me to wean off in 6 weeks though. I've read your posts about the Stelara and how it can take "8 months" to work. Is there data on that? Every doctor I talk to said it should kick in sooner than that, and their patients don't take that long to respond.@Poppysocks are you on bridge therapy (steriods) until Stelara kicks in ?
On average it can take 8 months to be fully effective.
Ds took steriods for a very long time 5/6 months before Stelara started to work abd 8 months to be effective
That said he got his first dose in Aug 2017 and it’s still going great
so worth the wait
Are you not on any medication right now?That's ok, I can control the crohns with diet and partial enn.
If I take it for a bit then stop no need to start again.
I'm 100% good now, well I have 2 strictures, but I have had these for over 2 decades, and I'm completely symptom free and like a normal human now.
No need to be immune supressd and leave myself open to maligancies and infections.
Plus should I ever need meds in the future I'll have the whole cabinet to pick from as I'll be biologic naive.
Entral nutrition is the key
I'm 33 now. But I was trying to get off of remicade in college with diet. I even was researching enteral nutrition back then. But switching remicade from every 6 weeks to 4 weeks gave me another 4 or so years. Then, when it started wearing off again, I finally started making some unique and strict dietary changes which helped the remicade last another 4 or so years. Then I came down with a positive TB diagnosis a few years ago which spooked me, and I wanted to get off the remicade. So I started stretching it out to 6-8 weeks. Bad idea. Eventually got to the point where I was literally only consuming elemental formula and not eating anything because that was the only way I could poop. My stricture kept tightening over this entire time until I said screw it and I ate some chicken and rice at a hibachi restaurant for my birthday. That ended up causing an obstruction and I had to fly to another state to get the stricture dilated ( first time). I've been on prednisone ever since (about 8 months). I said screw it and went back to remicade every 4 weeks but it's not enough to keep the stricture under control so I have to stay on the prednisone. This is why I am trying the stelara. They want to give me a colostomy bag.
I went 4 months without remicade and went back on it a few times. It's not so cut and dry. Sometimes you build antibodies. Sometimes the drug just stops working.@westernbuddy
If you start a biologic and quit
Then you can’t restart the same biologic later if you start to flare. Your body will build antibodies and it won’t work anymore
Was your recent scope and imaging clean to determine remission?
Or are you going by symptoms?
Most Gi do a scope /imaging prior to starting a new biologic so you can measure if the med is working
They have a reference point of what your gut looked like prior and then what it looks like after being on the med awhile .
Why did you push for every 4 weeks since the initial infusion? Did the initial infusion not even work for your son? How did you know he needed a higher dose?Sorry to hear things are rough .
We were told it can take up to 8 months to work.
The first infusion is a high dose so it lasts longer.
Normally you are on steriods as a bridge therapy until it kicks in fully .
Ds stayed on steriods for 7 months .
In the end he did need Stelara every 4 weeks
But they fought insurance for 8 months from the first infusion till it was finally approved at every 4 weeks.
three years later insurance again tried to force the doc to every 8 weeks .
Doc tried every 6 weeks once and caused a flare so insurance again agreed to every 4 weeks after many months of appeals and reappeals/peer to peer
your Gi will have to battle it
Stelara Infusion 10/29/2021. 3 vialsHow often do you take Stelara?
Every 8 weeks ?
6 weeks ?
Or 4 weeks ?
how long have you been on Stelara at that dose ?
Stelara can take up to 8 months to work .
Ds needed every 4 weeks to keep his fecal cal down .