Remicade levels low and antibodies present

That is up to you really. I was in a similar situation, refused pred because of the negative side effects, and I didn't want to wait too long to get my life back. Eventually, I opted for surgery. I tried Entvio, which was kind of a waste of time for me because I was already struggling for so long and I didn't want to wait a long time. Fortunately for me, I was somewhat stable when I began entyvio and I was able to refuse steroids... things just got worse for me while on Entyvio. If I were in your shoes, I might skip Entyvio for the moment and try xeljanz - that appears to work a bit faster. A lot of people on entyvio who have been successful seem to be less severe cases, and they waited quite a while for a response. Have you had stool tests? There is always uceris? You could ask about tacrolimus but they would likely have to admin that while you're an inpatient in the hospital. I am not sure why they even bothered with humira in your case, you would have been better off trying something else with the limited time you have. You've been sick, and on pred, way too long.

I probably would have done the same since you initially responded to remicade. It seemed like maybe the humira would work, but I guess now that we know about your bones, we are finding that time is of the essence. Realistically, your colon you can live without, but your bones, if they fail, you're in trouble. I am sure something will work. I personally would go to xeljanz before entyvio. You don't want to be on prednisone any longer than you have to. Request stool tests when you speak with the doctor.

Sara, How frequently are you taking the Humira? I had to go up to weekly injections to get a good result. My GI tells me that 40% of UC patients need weekly injections.
I would get the bloodwork first. Don’t give up hope just yet!
Best,
Lisa

I would do both calprotectin and c diff. Why not? Try not to stress. I don't think trying uceris again is a bad option. I just don't want to see you stay on pred for too long when your bones are already struggling. I also know surgery isn't the most appealing option in the world. If I could have avoided it, I would have. Though I say that, I can tell you, I just went out for many hours and didn't think about UC for a second. At the same time, I will probably wake up in the night and go to the toilet at least once, which I hate, and I don't want that for you, but at the same time, there are worse things!! it's a really tough situation. This whole UC thing is awful. I wish I could tell you what is right, or what's best, but all I can say is that you need to do what is best for you. I wish my situation didn't come to surgery, but at the same time, I am thankful I am where I am. I guess you have to take it easy, give humira a bit of time, then be ready to move. I'd consult with a surgeon too just in case. Good to have a plan even if you never intend to use it. I am happy you find my info helpful. I was worried I might have been harsh earlier. I never want to be harsh. I just don't want you to be blindsided by this illness. it's so easy for things to happen quickly. fingers crossed for a quick recovery!

No, it's not a bug. I got off the pred and my symptoms predictably returned. I doubt it's c-diff either because of the timing with pred. I've actually never had a stomach bug since getting UC.

I have to wait until right before my next injection to do the bloodwork to see if Humira is working, so that's two weeks right there. Then probably a week to get the results. Isnt it clear it's not working since I have symptoms? The amount of time we are told to just wait and suffer with this disease is just unreal. They need to figure out better treatment options. No one seems to care that we are just told to wait weeks or months to see if something will work. I could have at least had one good month on pred if I hadn't suffered through that Imuran.

Last night I woke up 3 or 4 times to pee so waking up at night is normal for me. I just worry about having a bag and what if something went wrong and I was stuck with one. Plus I read about all the complications people post here. Dont I have to try all these meds before surgery would be covered anyway or no? Plus everyone here freaked me out telling me I have to travel to a big city for the surgery and I really dont want to do that. Cleveland is a 6-hour drive. Chicago is 4 hours but I hate it there. I wanted to have the rectal surgeon I already have do it if I ever had to.

Ok, thank you. Sorry, was a bit crabby/frustrated this morning. I haven't gotten bad at all yet, so maybe it will be fine.

Uceris isn't released until it's in the colon and is mostly topical rather than systemic. I doubt that you could absorb enough to affect your bones at all.

Uceris works best for mild flares. The longer you wait to start taking it the less the chances are that it will help if your flare worsens.

Waiting is always the hardest. This disease is a never ending lesson in patience that's for sure.

Uceris is about 90% topical and 10% systematic. Whereas pred is 100% systematic and it is that systematic affect that impacts our bones. Uceris is the lesser of two evils regarding calcium-depletion but is not totally free of that damage.

Uceris is also intended for only mild inflammation. If your inflammation is on the severe side then it is about as effective a sparrow's-fart against an oncoming hurricane.