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Ulcerative Colitis
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Posted 3/22/2018 12:41 PM (GMT 0)
I saw a new specialist, one who deals extensively with UC and Crohn's instead of a typical gastro doctor.

He put me on 6mp and moved my Entyvio infusions up from 8 to 6 weeks. The 6mp only lasted a few days as that brought on bad sickness such as vomiting. I've had 2 infusions at the 6 week mark instead of 8. havent noticed a big difference.

I meet with him again in 2 weeks. First, I'd like to have a colonoscopy. I havent had anything since early last year and I want to see how things look. I'm guessing the inflammation is now mostly in my rectum and not my colon.

I'm curious what options I should look at? He mentioned Remicade, but I dont want to necessarily come off Entyvio because it has done a lot of good for me. I'd say it took me from 0% effectiveness on Humira to about 60-70% on Entyvio, all by itself. I'm not sure what classes I should look towards. I have had bad reactions to 6mp and Azathroprine so I'm guessing that class is completely eliminated. I was on lialda for a few months and that had me in remission before my flare came back. Could I circle back to something in that class? I'm sure he will suggest some type of rectal medication which I am okay with. I didnt like doing it at first, but I'm sure it is one of those things where after a while you get used to it, especially if it helps get me back to remission.

I just want to have a plan going forward. It just seemed with my old doctor, we pretty much just threw the sink at the problem without properly addressing the issue.
Posted 3/22/2018 1:06 PM (GMT 0)
See how the 6mp works for you, if it's as bad as before then your only other option within that class is methotrexate.

Yes, I would reintroduce mesalamine. For me, I achieved a remission using remicade, and 6mp, and lialda, and rowasa enemas, and prednisone simultaneously.
Posted 3/22/2018 1:32 PM (GMT 0)
Thanks iPoop, I would like to circle back to the Mesalamine. So based on your medications, I could take multiple medications from that class? That would be my preference as opposed to another class just given the original success I had with Lialda.

I dont want to come off Entyvio and onto Remicade. I'd like to keep Remicade in my back pocket for a later date after hopefully a prolonged period of remission with Entyvio.

My understanding is that getting to remission is much harder than maintaining remission, so many people take multiple drugs and then can slowly stop taking them while in remission. Could circling back to something like Prednisone do the trick? I was on it for a few weeks last year and it worked well minus the bleeding. I was only taking the Lialda and the Prednisone. I hate taking Prednisone, but if taking it for a few weeks could get me back into remission, that'd be good with me.

I appreciate your help with stuff like this. I've found much more useful information on this board than I have with any doctor.
Posted 3/22/2018 1:55 PM (GMT 0)
"I would like to circle back to the Mesalamine. So based on your medications, I could take multiple medications from that class?" Yes.

"I dont want to come off Entyvio and onto Remicade. " I wouldn't come off of entyvio yet if it's helping. If humira didn't work then I'd be quite surprised if remicade did (they're both tnf-alpha blocking meds). Rather, I'd consider stelara or xeljanz which are all different mechanisms of action than entyvio or remicade. Keep stelara and xeljanz in your back pocket.

"Could circling back to something like Prednisone do the trick?" I'm a proponent for throwing a lot at it. The general idea is to hit the inflammation and flare very hard, get the inflammation processes to stop for about 2-months, and that can trigger a remission once the attack is ceased for a while. If the immune attack is over, you're healed, then we're in the best shape for a sustained remission. Afterwards, you cut back on things, as yes it takes a lot less to sustain a remission than to initially achieve it. A couple weeks isn't long enough.
Posted 3/22/2018 3:40 PM (GMT 0)
I agree with iPoop, definitely try circling back. I also wonder if there's something else you can take with the 6mp to make it more tolerable for you. There is also uceris, maybe that can get you feeling well, and help avoid prednisone.
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