Where to go from here..

Hello all,
I’ve been on Humira since September 2017. I was put on it while hospitalized for cdiff and a severe UC flare. It worked very well for me until I got pregnant in August 2018. I flared mildly throughout the pregnancy and now at 8 weeks postpartum, I’m definitely flaring. Nothing too crazy. about 3-4 BMs a day. Some urgency and the BMs vary between watery and mushy, and then there’s the occasional perfectly formed BM.

My GI is suggesting that I come off the Humira altogether and start entyvio. I’m not sure I want to stop the Humira, I feel I may be able to get this under control and stay on the Humira. I think the hormones are probably playing a large role in the flare up. As I flared during my last pregnancy and postpartum as well. I had a good response to Humira, so I’d like to try to salvage the medication.

My GI basically said it’s a waste of time to try a course of steroids or to try any of the other anti-tnf drugs. She says entyvio is my only choice right now. Apparently, she feels every time a flare up happens, that the answer is to switch drugs. This seems terrifying to me. What happens when you eventually run out of medications to use??

I’ve been unhappy with her for a while, so I have an appointment with a new GI in about 4 weeks. I’m just wondering what other people’s thoughts/experiences are, so that I’m prepared for the appointment with the new doctor.

Is it worth trying to stay on the Humira? Should I suggest changing the dose from biweekly to weekly? Maybe try remicade since I had an initial response to Humira?

Any feedback is really appreciated. I feel very lost as to where to go from here and I feel like my current GI may be giving me some bad advice.

Sorry to hear you're flaring I would agree, a second opinion sounds like a good idea. It can be hard to find a GI that you really trust (I'm on my 5th, I love him and will be devastated when he retires).

If you have antibodies to humira, you may do well on another tnf-inhibitor like remicade.

I agree that you should avoid steroids as far as possible.

When you eventually run out of medications there is surgery. I was faced with this prospect a few months ago, of course nobody wants to have surgery but now that I'm informed about what it involves, it's a lot less scary and I've accepted the odds are I will probably have it some day. I "failed" remicade and entyvio (it wasn't really failure because they worked partially) and was put on xeljanz as a last resort. It worked for me when we least expected it (namely, 3 days after i booked an appointment to talk to a surgeon).

Hope you find some relief soon, it must be busy enough with the new baby!

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F36, DX pancolitis 2015
3 year flare Jan 2016-Mar 2019 (severe distal colitis)
Not daring to use the R word yet
Meds: xeljanz + mesalazine
Probiotics: vsl#3 and mutaflor
Stopped due to insufficient response: budesonide, prednisone, 5ASA enemas, azathioprine + allopurinol (at various doses), infliximab, vedolizumab (entyvio)