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Ulcerative Colitis
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Posted 1/20/2019 4:32 PM (GMT 0)
Advice, please?

I’ve been on Entyvio since August 8. I did my normal loading doses, then the first regular infusion at 8 weeks. They bumped the next one to 6 weeks when I wasn’t improving, and then to 4 weeks. My symptoms have worsened a little over time. At times I think I’m seeing gradual improvement but I’m still having bleeding, tenesmus, cramping, urgency, etc. Some days are better than others.

Since my second to last infusion, I’m seeing more diarrhea, which is not a normal symptom for me (I normally have constipation), which has been MUCH worse since my last infusion on Tuesday. I’m only going 2-3 times per day but with crazy urgency at times. The diarrhea seems to be worsening with the more frequent infusions.

I’m requesting a calprotectin level and c-diff test, but what do you all think? Assuming it’s not c-diff, is it time to throw in the towel on Entyvio? I’m sad and frustrated that I’ve gone through so many drugs and my disease doesn’t seem to respond to any of them (even prednisone) except for a short 3 month remission on Remicade (which stopped working).

As for diet, I’ve eliminated dairy, coffee (sadly), alcohol. I’m trying gluten free again right now. I don’t eat a ton of fiber. Probiotics make things MUCH worse. I have not tried cutting out sugar but could try that next :/ although I don’t want to.

Is it time to ask for Xeljanz? Should I give up on Entyvio? What would you do?

*edit: my signature was out of date - we stopped tacrolimus in the fall.
Posted 1/20/2019 7:31 PM (GMT 0)
When my doctor discussed Entyvio with me she was not thrilled about it. Nothing else has really worked for me and it takes 4-6 months to know if you’re going to respond. If you’re at 5’ish months and getting worse, it doesn’t sound good.

Xeljanz was working for me, but it made me super sick. Gastro side effects are kind of common with it, tho the severity of my experience is apparently fairly rare if you believe my doctor’s rep. That said, it stopped bleeding for me within the first week. So the nice thing about it, at least, is that most people who will respond will do so in 4-6 weeks. I’d start asking your doc about it.
Posted 1/20/2019 7:44 PM (GMT 0)
Thank you! That’s the weird thing about it - some things are improving (bleeding is less, not passing blood alone anymore, less tenesmus), but the diarrhea has gotten progressively worse after the last two infusions. I wonder if it’s a side effect? It’s not published as one, but a quick search in the FB Entyvio group turns up quite a few reports of it.

I’m also thinking again about my diet. Maybe fat in my diet could be triggering this? I do eat dairy free cheese which is loaded with it.
Posted 1/20/2019 8:31 PM (GMT 0)
I lasted 16 weeks on entyvio before switching to xeljanz. However this was after many lengthy discussions with my doctor (ibd specialist), who was more keen to do the switch than me. I think in the end he convinced me by saying that if xeljanz doesn't work out i can still go for my next entyvio infusion (due in 6 weeks). That took some of the fear out of it. We also talked about surgery so that i could mentally prepare myself for the "worst case scenario" (he said nearly everyone who has it done says they wish they had done it earlier). Only you can know if you're ready to change (barring medical emergency), I think questions to ask are how much of my life is on hold or limited by my condition, what could xeljanz offer, and how much could things improve if i find myself in the "worst case scenario"?
Posted 1/20/2019 8:39 PM (GMT 0)
Thank you, @poopydoop! All of that is helpful.

Can you please share whether Xeljanz has worked for you?

I've been considering surgery since I failed Remicade, but it's the time off for recovery that worries me - I'm a wedding photographer and can't take long periods of time off right now (but clearly will do what I must).
Posted 1/20/2019 8:47 PM (GMT 0)
I have taken 3 tablets lol..started yesterday morning...so it's too early to say anything....when I have a better idea I'll let you know smile

I'm sure some of the surgery pros on here can give some insight about the rest time required for surgery..it depends of course also how much lifting you need to do...in my head i had the idea that one could go back to work within a few weeks?? My dr told me if you're in relatively good health going in for surgery you should be out of hospital in 4-5 days??
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