Bleeding just before Stelara injection is due

[belindasteyn]

Hi guys. I just want to know if there is anyone out there who has the same experience... My son (14) has been on Stelara for 9 months after Humira failed. After each injection it goes really well but about 1 - 2 weeks before his injection is due, he starts to bleed and goes to the bathroom more frequently. After the injection, the bleeding stops. So far he has had 2 scopes in the past 6 months and according to his doctor, his colon looks good. He said that maybe because my son's stools are more solid, it is irritating his colon. What he could not explain to me, is why the bleeding occurs only before his next injection is due. My son seems fine - no pain and the blood is bright red which is apparently good. His next injection is due the 18th and the bleeding started this morning again.

 

[my little penguin]

What frequency for Stelara?
Every 8 weeks ?
It can be given at every 6 or 4 weeks .
Did they do a MRE and pill cam as well ?
Since the colon can look good but the inflammation maybe up higher .
Did they take biopsies throughout including the rectum ?
Most kids need higher frequency.
Can you get a second opinion at another hospital ??
My kiddo (17) has been on Stelara for 4 years (age 13) after humira fizzled out
He takes it every 4 weeks
Battling insurance now (they want 8)
Gi tried 6 and break through symptoms
Frequency/urgency abdominal pain etc after 4 weeks
But better within a few days of injection
So …..
Definitely get a second opinion

 

[Pangolin]

Well that's interesting. My son had a little bit of blood on the stool about a week before his first Stelara injection, which was 8 weeks after the infusion. Fecal calprotectin was normal despite the little bit of blood. He's only had the one injection so far. It's been a week and a half since the injection, and the poops look perfect at the moment. We'll see if it happens again the next time around.

 

[Maya142]

So far he has had 2 scopes in the past 6 months and according to his doctor, his colon looks good. He said that maybe because my son's stools are more solid, it is irritating his colon. What he could not explain to me, is why the bleeding occurs only before his next injection is due. My son seems fine - no pain and the blood is bright red which is apparently good. His next injection is due the 18th and the bleeding started this morning again.

I was also thinking that maybe there is inflammation in his small bowel that they have not been able to see. A pillcam or an MRE would make sense, to rule that out. Considering he is only bleeding before the next Stelara injection, it's likely he needs them more frequently. There are plenty of kids that need them every 4 weeks or every 6 weeks instead of every 8 weeks. It might be a battle with insurance, but it can be done.
I agree that if the blood was coming from a fissure and having solid stools, then it wouldn't only happen right before his injection was due.

 

[belindasteyn]

I was also thinking along the lines of more frequent doses - maybe every 6 weeks. Stelara is still fairly new in South Africa so I am sure I will have a fight with our insurance. I did not know that so many kids get Stelara more frequently. Thank you for your input - it was very helpfull.

 

[Lady Organic]

it could be hard to justify an increase of medication without evidence (medical proof) of a need for it and especially if GI is not convinced himself.
if he ever has another scope planned, it should be at the end of his cycle, just before the injection, including biopsies.
In the meantime, calprotectine fecal test could be done in the same manner, the day just before the injection and if blood is present, and repeat test 2 months later if result was negative.