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Failing Remicade - New Game Plan?

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Ulcerative Colitis
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Posted 4/2/2018 7:13 PM (GMT 0)
Hi All,

It's been awhile since I've been here - was doing well on Remicade for the past year. We increased my infusions to every four weeks back in October when I was still getting symptoms, and I hit remission in December.

Last month, I started noticing a little bleeding here and there, some urgency, etc. Not terrible at all - I'm still eating normally and 0-2 bathroom trips per day, thankfully no tenesmus or anything like that.

We just did a calprotectin test to assess inflammation, and sure enough, it's high (329).

The Remicade has caused some liver damage - I had a liver biopsy back in December - and as my liver numbers started coming back down, the UC symptoms have slowly returned and ESR started coming back up. So - we think I'm not responding to the Remicade anymore.

I'm going in tomorrow or Wednesday for a flex sig to determine the extent of inflammation, but we need to consider next steps. GI feels we will not bump the Remicade dose up - my Remicade levels have been very stable and no antibodies - so we will look at changing drugs altogether.

Recommendations? Entyvio? Stelara? What's out there? What's well tolerated and working?

Thanks!
Posted 4/2/2018 7:19 PM (GMT 0)
Remicade REALLY jacked up my liver, I was in the hospital for two months under surveillance until it was strong enough to move onto Entyvio. But that's usually the course of action once Remicade fails, to move to Entyvio.
Posted 4/2/2018 7:34 PM (GMT 0)
IntestinalWasps, how have you tolerated Entyvio? Has it been okay for you so far?
Posted 4/2/2018 7:45 PM (GMT 0)
Fletch10,
We have been on the same projectory for a while now. Have you had your CRP tested? I also have had some return of symptoms such as some urgency and blood once every few weeks with a little bit of tenesmus.
Had a flex sig and my doc found some small rectal inflam. He claims that even when the remicade is working that you can get some rectal inflammation but I ponder if it starting to wear off as well.

I hear that simponi is a very good alternative and I am also hearing some good things about xeljanz which would be given off label. Entyvio will take a while to kick in. I am considering going to Mexico for FMT treatment in May.
Posted 4/2/2018 7:58 PM (GMT 0)
I remember you, Hugo! I'm sorry to hear you are also having some issues. My CRP has been normal, ESR has been getting higher, and of course now the calprotectin test.

I'll do the flex sig this week and we'll see, but I have a feeling this is the end of the road for me and Remicade. My GI seems to have a zero-tolerance policy for inflammation ;)

Which is fine with me, but he said during our call today that we are likely changing drugs given all the liver problems I've had on Remi and the change in my calprotectin (assuming that our scope shows inflammation).

Good luck with your FMT! Keep us posted.
Posted 4/2/2018 8:24 PM (GMT 0)
Fletch10 - Entyvio has been good for me so far. It takes quite a bit before it can really begin working for you (6 infusions in or so), but I'm sticking it out pretty well, well enough to be taken off of my oral biologics.

Still a little achey, still a little blood, but the urgency has vanished and I'm mostly pain free.
Posted 4/2/2018 9:56 PM (GMT 0)
i find it interesting that your Dr. looks more at ESR rather then CRP. What do the pros in healingwell say about this out of interest??
Thanks,
Posted 4/3/2018 4:51 PM (GMT 0)
I have been on entyvio now for a year and am in remission with no side effects. I was on prednisone when I started it but started tapering. By the time the taper was done I was so much better with occasional symptoms instead of daily Last September I had a colonoscopy that showed no visible inflammation but an area of microscopic inflammation on the biopsy. That was after infusion #5 and I was also symptom free by then. I was put back on nightly suppositories then because of the biopsy results. Another colonoscopy in February came back clear (except for polyps but that's another story!)

I did have an increase in headaches but haven't had one now for a month so hard to tell if it was a sinus issue of if it was a side effect that has resolved
Posted 4/3/2018 4:58 PM (GMT 0)
Entyvio (approved for UC), stelara (off-label usage), or xeljanz (off-label usage) would be options
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