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Switched from Remicade to Stelera, feeling terrible

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Crohn's Disease
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Posted 6/23/2018 11:30 PM (GMT 0)
Hello,

I come on this page occasionally to read, but haven't really contributed. I have had Crohn's disease for 12 years now. I was on Remicade for about 9 of those years, and towards the end was on a high dose (every 4 weeks 9 viles x 100ml= 900ml). I continued to have problems with urgency to go, and with stool being formed. about 2 months ago I switched to Stelera. I received the first dose by IV and didn't notice much different, and 4 weeks later did the first injection dose. It has now been about 2 weeks since then and I feel terrible. All stool that is coming out is liquidy and often pale white/clay coloured. I've had terrible back pain as well (which I've never had before). I am regretting ever switching and would give anything to just go back to how I was. I am hoping to see my doctor next week, but and wondering if anyone had similar experiences when making the switch? Are you able to switch back to Remicade?

Thanks for any help.
Posted 6/24/2018 11:54 PM (GMT 0)
You would likley want to check for antibodies before returning to Remicade. Stelara has had very good reviews, but I have no direct experience with it. It may take longer for Stelara to reach it's therapeautic level for effectiveness. Perhaps you could discuss this with your GI, and hopefully get a time line on when you should see results. Hope you're feeling better soon.
Posted 7/2/2018 9:24 PM (GMT 0)
Thanks for the response.

It's just been getting worse. GI was off last week and is fully booked this week so can't see her until the following week. I have lost 15 pounds now, not eating much. Anything I do eat goes through me. My next Stelera dose is on Thursday, maybe that will help. I'm not sure why it's not working as well as Remicade. One thing that I've noticed is that Stelera isn't delivered based on weight... why is this? How long do I go feeling terrible before making some kind of change?
Posted 7/2/2018 11:23 PM (GMT 0)
Once again, I don't really have any answers for you. I would suggest a short course of Prednisone at this point though. It might just patch you through until Stelara takes hold. As for your diet, try going low residue. Combine that with ensure a couple of times a day. You might have to resort to going to Emergency. Some Emergency departments have an on call GI. Either that are try calling for cancellations with your GI. Hope you're feeling better soon.
Posted 7/13/2018 12:35 AM (GMT 0)
Colonoscopy revealed today that disease is very active / flaring. I wasn't feeling perfect on the Remicade but felt 100 times better than I do now. My doctor is recommending ileostomy as a possible option (which I don't want, had one prior and was difficult for me) or Entivyo possibly.

Another question I have is when switching biologics.
I was on a pretty high dose (i think?) of Remicade 900mg / 4 weeks. Does this mean that when trying other biologics, to be even remotely effective, they would have to start at/with similar higher doses than normal? Also is there any proof that medication going into the veins via IV work better than just a poke in the skin?
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