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Stelara or Entivyo for proctitis - Answer please

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Ulcerative Colitis
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Posted 10/6/2022 2:31 PM (GMT 0)
I’m a Crohn’s patient for 15 years with stubborn proctitis. Developed January 2016 a perianal fistula and was put on a monthly dose of Remicade until the fistula healed in 2019. Ever since, my Remicade infusions have become every 8 weeks. In 2017, my GI informed me that my rectum is not responding to Remicade and I should take Cortiment (Budesonide ). Took it for 4 years but not the whole dose (6 or 7.5 mg). Since 2021, I tried to taper Budesonide off but failed so I’m taking the least dose (1.25mg) but it cannot control my proctitis symptoms which are severe rectal pain, inflammation, nausea and a severe headache. I even developed some kind of allergy when I take either pentasa enema or Pentasa suppository. I would get severe abdominal cramps, watery non-stop diarrhea and even after taking Imodium, it would take me some days to feel better. Yesterday, I had a lot of work to do and whenever I took either Budesonide enema or Pentasa suppository, I couldn’t retain it and the pain was unbearable. Contacted my GI but he hasn’t replied yet. I think I need to take important decisions: First, to change my GI as he hasn’t been helpful lately or may be postpone this step at the time being. But definitely I need to switch to another biologic. Given that you are UC patients and suffer from proctitis as this is rare in Crohn’s, does either Stelara or Entivyo treat rectal inflammation or would I hear the same words if I switch to any of these “Stelara/ Entivyo doesn’t reach the rectum “ as I was told when I took Remicade. Your feedback is highly appreciated.
Posted 10/6/2022 4:51 PM (GMT 0)
I don’t know who told you remicade wouldn’t reach the rectum. Any infused medication or injection is entering your whole system. I know they say some pills “release” in certain areas of the digestive system but I personally have never understood how that works. Entyvio is an infusion and supposed to just target the gut but I don’t know how that works either.

I think some drugs/biologics are better suited to some people’s disease than others but there is no way yet to tell which is going to be effective for each individual person. Unfortunately it’s a case of trial and error.

I hope you find some relief soon. It would probably be helpful to consult with another GI if you are losing confidence with yours. Just know it usually takes at least 2-3 months to get an appointment with a new dr (and most likely, even longer).
Posted 10/6/2022 10:08 PM (GMT 0)
I have used Tacrolimus suppositories which have been really helpful. Dose is 2mg. In my case it is actually an ointment which the local compounding pharmacy formulates and I administer it using a topical applicator each night (originally it was twice a day). Having said that I have UC. Since Crohns is a transmural (vs submucosal) inflammatory process it may not be as effective.
Posted 10/7/2022 1:10 AM (GMT 0)
Have you had your remicade levels checked to see if you have antibodies? Is your dosage 5g/kg/every 8 weeks? You can be on it a max of 10 mg/kg/ 4 weeks long term so he could increase the dosage and frequency. That's the dosage I had to go on to get to remission. Since it worked for you before that would probably be the thing to try first if you haven't developed antibodies (which is a real possibility with the length of time you have been at that dose with active symptoms).

That test has to be done right before you next infusion.

I have used hydrocortisone suppositories in the past. They worked pretty fast and may be better for proctitis than the enemas. Maybe ask for them?

You might want to start looking for a new GI. This history doesn't sound like you are getting the best care you should be getting.
Posted 10/7/2022 5:06 PM (GMT 0)
Minnie, you addressed much of this in the crohns forum & your disease is being undertreated. If your dr is not willing to increase your dose, get a 2nd opinion.

You said you get 5kg every 8 weeks, your trough levels have checked out fine. Your dr should increase your dose to 10kg & move your infusions closer together. I've never heard of a dr saying the drug would not reach the rectum.

Changing to another medication is not a guarantee that it will work for you at all. Be assertive & advocate for yourself, that's what we have to do.
Posted 10/8/2022 8:50 AM (GMT 0)
Yeah, they should all reach the rectum. Xeljanz has treated my entire colon, including the rectum. I was even able to discontinue Rowasa enemas after being on them for over 14 years.
Posted 10/8/2022 3:28 PM (GMT 0)
I don’t know about the “reach” part, these are injectable or infusions, not oral or enemas.

Stelara is faster acting. My GI likes to use Stelara for CD patients to start with and Entvyio for his UC patients.
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