HealingWell
Search Close Search
☰

Is Stelara effective for proctitis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/20/2022 12:40 PM (GMT -5)
I posted before. I’m a chronic Crohn’s patient, who was diagnosed in 2007 but only started Remicade in 2016 after I developed a perianal fistula. The fistula was claimed to have healed in 2019 and ever since I have been taking Remicade every 8 weeks. When I had my fistula, I used to take it every 4 weeks. Since November 2021, I started complaining from constant soiling and severe rectal pain. I was put on Pentasa enema 4g and Trud enema but to no avail. In 2017, my GI informed me that my rectum was not responding to Remicade and that’s why, I have to take cortiment (budesonide MMX 9 mg). Things kept being fine until I had to taper budesonide. I’m on a 1.25 mg dose ( one 9 mg tablet every week). I took Pentasa enema for months but for the last 4 weeks, when I need to have a bm after taking it, I have severe abdominal pain while on the toilet, diarrhea and vomiting. It’s really weird and it can happen anywhere whether at home or once it happened when I was at a mall.
Saw my GI on Wednesday and we discussed the idea of changing Remicade. My trough levels are high and I have no antibodies, however, I don’t think it’s working anymore. My GI said and I seconded him that we don’t want to change Remicade now. But on a second thought, I feel I was mistaken, I want to change Remicade. I’m very sick nowadays even my intestines hurt. My GI prescribed 3 steroid injections every other day. Took 2 injections but I don’t feel any better and I returned to the 1.25 mg budesonide dose as I was taking Entocort 1mg. My question: Is switching to Stelara worth giving up the so called “effectiveness” of Remicade as there are no antibodies and the trough level is high (within therapeutic level) and it would ease my rectal pain or is it a risk?
Posted 8/20/2022 12:53 PM (GMT -5)
Switching meds might give you the boost that you need. I’d do it as close to your next Remicade infusion as your insurance company will allow. Remicade will stay in your body for 3-6 months. You’d be basically doubling up on biological treatments and they both use different mechanisms.

If you go over to the crohns forum on HW you’ll find people who have had success treating fistulas and perianal issues that took Stelara.

I’ve been on Stelara for a very long time and I like it a lot, it’s been the best biological for me that I’ve taken.
Posted 8/20/2022 1:21 PM (GMT -5)
The effectiveness of remicade is to do with how you're feeling, not your blood levels. I also had a good therapeutic level and no antibodies but it just didn't work well for me.
After that I tried entyvio which was a bit better and then xeljanz which did the trick. Never tried stelara as it wasn't licensed for UC at that time. Heard good things about it for crohns though.
Posted 8/20/2022 8:51 PM (GMT -5)
I was on Entyvio for years, which helped a lot, but did not eliminate all my UC symptoms. Switched to Stelara, which has not made much difference. Specifically, I still have some proctitis after using Stelara 18 months.

I guess Stelara works better for some, as my doc was hopeful it would do better than Entyvio.
Posted 8/20/2022 11:52 PM (GMT -5)
If you aren't feeling well, I would definitely consider switching meds. Unless you want to stay on the budesonide longer term and your GI is ok with that. Sorry you're not feeling well.
Posted 8/25/2022 11:28 AM (GMT -5)
Thank you all. Had the ultrasound and it didn’t show any malignancy (this is what my GI was suspecting). So, no changes in meds at the time being: Remicade infusions every 8 weeks and I’ll switch to Pentasa suppository as it seems that may be one of the excipients of Pentasa enema is causing me the awful diarrhea accompanied at the same time with throwing up in addition to cramps that I have been suffering from for a month whenever I take Pentasa enema. I have been taking it for months but it seems that it lately caused me problems, which is weird.
Posted 8/25/2022 1:49 PM (GMT -5)
I had high remicade levels and no antibodies and we switched to every 4 weeks as a last resort before trying a new med. 4 weeks got me in remission. You might want to give that a try before moving on to a different drug

I've never heard of taking 1 budenoside tablet a week and doubt that is doing anything at all. It's the safest of the steroids since it doesn't release until it hits the colon so you can be on it longer without it causing problems.
✚ New Topic ✚ Reply