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First scope after starting Stelara

my little penguin

my little penguin

Moderator
Staff member
So Ds started Stelara six months ago
Scope was last week entire upper/lower looked pristine
Biopsies only showed minimally active chronic illeitis which the GI GI said shows the mucosal is in the process of healing itself
So for DS Stelara is working for his GI tract

His joints are another story so still trying to get the dose increased to every 4 weeks
So far no luck due to insurance
 
N

newdiagnosis

So glad to hear that the Stelara is working!!!!! My scope is this Friday, and this is actually 7 months after starting Stelara. I have been off predisone for almost a month. My joints are well controlled, and I am only on a minimal dose of Sulfasalazine (1000mg), which I don't think is actually doing much. I should increase the sulfasalazine to 2000mg daily, but afraid that my white cells will decrease. We have been in the process of getting the Stelara dose increased to every 4 weeks (my trough levels were 3.0), but it has been difficult.
 
Scipio

Scipio

Well-known member
Location
San Diego
Same good news here. Last Friday I had my first scope since starting Stelara a little over 3 months ago and everything looked clear. Mild stricture in the ileal region but other than that a perfectly normal looking gut.
 
A

aypues

I'll be the Debbie Downer here. I've been on Stelara for 6 months and it's not doing much. We found I had an undetectable drug level, so insurance did approve 4 week dosing and an IV reload. I was in pretty bad pain last week so had to go back on Entocort. iron/ferritin/hgb/albumin all declining, crp up a bit. Hopefully once I get enough drug in my system it will start to work!
 
Scipio

Scipio

Well-known member
Location
San Diego
aypues said:
I'll be the Debbie Downer here. I've been on Stelara for 6 months and it's not doing much. We found I had an undetectable drug level, so insurance did approve 4 week dosing and an IV reload. I was in pretty bad pain last week so had to go back on Entocort. iron/ferritin/hgb/albumin all declining, crp up a bit. Hopefully once I get enough drug in my system it will start to work!
Click to expand...
Janssen's own data from their main clinical trial of Stelara showed a 56% response rate. That means it didn't work or didn't work very well for 44% of those taking it. Which is comparable to most of the other Crohn's biologics. So I guess it's disappointing by not surprising that it doesn't work for everyone.

In any case, I hope starts working for you once you get your blood drug levels up.
 
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