Yes I tried Remicade back in 2004 and it didn't seem to work..I was on Cipro, Asacol, steroids of course. Right before my surgery they put me on humira and it worked for a year and stopped. Thats when my UC got really bad. Here I am a year later with my good ole J-Pouch 

I tried infliximab three weeks before my surgery.. Was my last option. I got two big doses over a week, didn't help at all. 

I tried Remicade, Humira and Entyvio, at least 6 months of each to give them time to work but they weren’t effective for me. 

Hi..anyone on entyvio now with j pouch? Before dr she left he got me approved by insurance for entyvio. Its been a year of infusions every 8 weeks..not sure if improving. Afraid though to discontinue.  Rectal pain is so bad & more incontinence at night. Very tired. Any others feel the same? Thank you.

Yes I tried both Remicade and Humira. We thought Remicade was working for a short time, but it wasn't. Humira really didn't help at all. So for me it was high doses of steroids until I was told the colon had to go.

Aimee

@Bent-Arne posted:

I tried infliximab three weeks before my surgery.. Was my last option. I got two big doses over a week, didn't help at all. 

Infliximab = Remicade, unless you took a biosimilar. Getting 2 big doses in a week is not how it is usually administered- in fact I have never heard of it.  It is done 0-2-6 (thought this was the industry standard) and after that every 4-8 weeks.  Usually you do not see results for months.  Results show up on a scope in 6 months.  If you are really sick you cannot go on meds like this and expect instant results- not going to happen in many or most cases, regardless of whether it proves effective in the long term.   It's partly for that reason that I was on antibiotics when I started Remicade, and eventually was able to wean completely off of them.

Last edited by CTBarrister
@CTBarrister posted:

Infliximab = Remicade, unless you took a biosimilar. Getting 2 big doses in a week is not how it is usually administered- in fact I have never heard of it.  It is done 0-2-6 (thought this was the industry standard) and after that every 4-8 weeks.  Usually you do not see results for months.  Results show up on a scope in 6 months.  If you are really sick you cannot go on meds like this and expect instant results- not going to happen in many or most cases, regardless of whether it proves effective in the long term.   It's partly for that reason that I was on antibiotics when I started Remicade, and eventually was able to wean completely off of them.

I am surprised his doctor even thought that was okay to do it like that lol

Well, this was the last resort I suppose.. I was in the hospital really really sick. The first dose helped slightly, but then it went for the worse. So tried again,but failed miserably. This is the problem with the Norwegian healthcare system, regarding ibd. Things are tried way too late. The gi and the surgeons said this was normal to try as a last resort. 

Biologics are usually last line or last resort drugs, but Remicade is not usually administered the way your doctors did it, and there should not have been any expectation of instant results if you were really sick.  Sorry to hear about that Bent-Arne.  It's possible you were headed for surgery anyway, and their rationale was "nothing ventured, nothing gained" and you did not have months to wait it out. It may or may not have helped if it had been administered as it usually is, and if you did not have months to wait it out, they could have ended up eventually performing an emergency surgery on you after your colon perforated.  So I can kind of understand their out of the box thinking. I was very close to that status when I had surgery, but Remicade did not exist at that time in the USA.  It only came to market in 1998 or 1999. So I was past saving (from surgery) anyway.  They tried Imuran on me before my surgery, and my liver chemistries were sent sky high, so that was the last ditch fail in my case.

Last edited by CTBarrister

I was also given one dose of Remicade before surgery as a last ditch effort to save my pouch.  My GI at the time said it was a miracle that could put me in remission.  Needless to say it didn't work as he intended and I had j pouch surgery a week later.  (This is also the GI who said I'd be cured after surgery and therefore pretty much ditched me after surgery.)

That was in 2006.  Hopefully, more GI's are informed about the proper way of administering it. (I was put on Remicade a couple of years ago and had a bad reaction to it.  Perhaps it is due to this one dose given 14 years ago.)

 

 

@Bent-Arne posted:

Well, this was the last resort I suppose.. I was in the hospital really really sick. The first dose helped slightly, but then it went for the worse. So tried again,but failed miserably. This is the problem with the Norwegian healthcare system, regarding ibd. Things are tried way too late. The gi and the surgeons said this was normal to try as a last resort. 

Remember to get your pouchy checked once a year- some doctors do not know about that. You are in Norway still? I hear the sun rarely sets over there?! That sounds peaceful! 

I was also given one dose of Remicade before surgery as a last ditch effort to save my pouch.  My GI at the time said it was a miracle that could put me in remission.  Needless to say it didn't work as he intended and I had j pouch surgery a week later.  (This is also the GI who said I'd be cured after surgery and therefore pretty much ditched me after surgery.)

That was in 2006.  Hopefully, more GI's are informed about the proper way of administering it. (I was put on Remicade a couple of years ago and had a bad reaction to it.  Perhaps it is due to this one dose given 14 years ago.)

 

 

That was wrong for him to ditch you- that is pretty tacky, mine did the same thing after my surgery too. Hopefully the world gets better doctors. I am happy that you are okay now though,

i tried both remicade and humira. i was hospitalized and kept on remicade for about 2 weeks but no changes. i was using humira for about 3 months and that also didnt work. thats when i decided to just remove my colon lol.

I was on Remicade for 10 years prior to my pouch. Remicade put me in remission for 7 good years—then I started experiencing small flares and then 2 major flares that put me in the hospital. Tried Humira for 3 weeks until the surgeon finally said, “this is no longer about saving your colon, it’s gotta go.”

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