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Ulcerative Colitis
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Posted 11/14/2019 9:39 PM (GMT -5)
Hello! Thank you for reading: I'm an emotional wreck and this forum always helps me so much!

I started flaring in June and in August I started Humira every ten days, and Rowasa every couple nights as well. After the sixth dose, I enjoyed an amazing, incredible, fantastic 14 days of completely normal poop (once a day, textbook perfect). Then I had a couple weeks of relapse (urgency, loose, 3-5x/day). Then a week of normalcy again. THEN it relapsed again with some blood included, and today it got worse, with three movements of JUST blood. Which obviously freaks me out quite a bit.

Before my appointment next week, my doctor had me send off bloodwork to find out whether I have antibodies to the Humira or not. I suppose that might make the decision either way, but in the meantime I'm freaking out.

So I'm wondering: does this sound to you like it still might be fixable by increasing the Humira to once a week? Or should I expect that Humira injections failed entirely? I could still try Humira infusions. If Humira fails, does that mean that Xeljanz and Remicaide have a higher failure rate as well?

I'm so tired... two small children and a new job... my mind always goes to worse-case scenario so I'm wondering if eventually this will force me to quit my job and just be sick all the time....!! Or maybe I'll have to seriously think about surgery. : ( : (

Any advice/opinions/thoughts are appreciated!!

________
Flaring since June.
In my summer colonscopy, doc reported that it had spread from proctitis to farther in my colon.
Prednisone stopped working, Asacol never worked.
Taking: Humira injections every ten days since August. Rowasa every couple nights or every night. Probiotics and vitamins like amino acids, adaptogens, collagen.
Eating no sugar, wheat products, or fruit due to previous success with that food plan.
Posted 11/14/2019 10:21 PM (GMT -5)
Have you tried going to nightly Rowasa?

I think you need your antibodies and levels results back before knowing what the next step will be and before being able to reach a good answer to your questions. I've been reading about this lately because I just failed Remicade and am about to start Humira. If you have no antibodies and good levels of the drug in your system, but are still not responding to the medicine, then I think you have a lower chance of another tnf drug (like Remicade) working; however, if you developed antibodies to Humira and that's why it isn't working, then I think you still have a decent chance of Remicade working. If your levels of the drug are low, then your doctor might decide to try increasing the dose to every week. Entyvio and Xeljanz are different types of drugs, so your failure of Humira shouldn't matter as far as the chances of those two working for you.

Good luck at your appointment next week and let us know what your doctor says. I have the same fears as you when I'm really sick.
Posted 11/14/2019 10:34 PM (GMT -5)
Thank you for your reply!! It makes me feel less scared to know that you have the same fears as me too. I talk my ear off my hubby about this but I think only another UC'er (or another chronic disease) can really understand the anxiety of it. I'll try and remember to update this post when I know more.
(I have done nightly Rowasa and it doesn't seem to make a difference but I'm doing them now because I gotta do SOMETHING while I'm waiting...)
Posted 11/14/2019 11:02 PM (GMT -5)
Yeah, I totally understand. One of my biggest fears lately is prednisone losing effectiveness for me. I see in your signature that it stopped working for you. It doesn't work as well or quickly as it used to for me. I asked my doctor if that is typical for it to lose effectiveness over time and he said no, but it seems like that happens to a lot of people on this forum at least. I hope you get better soon! UC can be extremely stressful. And you're right, no one really understands unless they've been through it themselves. I can't imagine having small children to take care of while in a UC flare.
Posted 11/14/2019 11:36 PM (GMT -5)
I couldn't do it without my hubby. Tonight after seeing all the blood I just couldn't emotionally function very well so I went upstairs and hid in my room while Hubby did dinner and bedtime.
The one good thing about the prednisone stopping working is that it was very obvious when it stopped; I didn't have to wait a long time to figure it out. I suddenly had the terrible symptoms that everyone talks about (that I had never experienced, like fever, sweats, etc, while experiencing NO relief from the UC symptoms) so then it was on to the next thing.
A LOT of people I know personally do really well with prednisone/enemas/biologics over the long term. The people who have no problems any more, of course, don't usually come to forums, so everyone here self-selects as being the "difficult" ones, LOL. So I try to remember that a lot of people have lasting success, and I just have to find what works for me.... doesn't help on days like these but on other days I'm more optimistic!
Posted 11/15/2019 5:32 AM (GMT -5)
I had initial response to Humira after the loading doses, but then it got worse and even increasing to weekly shots didn't do anything. I switched to Remicade in March ... much better response but I wasn't doing as well as I should have so doc increased dosage of remi. I've had 2 infusions at the increased dose and now I am very close to remission.

If you have antibodies to Humira (I did), Remicade might work better for you. I had to talk my doc into trying remi -- he thought since Humira didn't work that remi wouldn't either. He's glad that he seems to have been wrong smile
Posted 11/15/2019 8:20 AM (GMT -5)

OneDayAtATime99 said...
I couldn't do it without my hubby. Tonight after seeing all the blood I just couldn't emotionally function very well so I went upstairs and hid in my room while Hubby did dinner and bedtime.
The one good thing about the prednisone stopping working is that it was very obvious when it stopped; I didn't have to wait a long time to figure it out. I suddenly had the terrible symptoms that everyone talks about (that I had never experienced, like fever, sweats, etc, while experiencing NO relief from the UC symptoms) so then it was on to the next thing.
A LOT of people I know personally do really well with prednisone/enemas/biologics over the long term. The people who have no problems any more, of course, don't usually come to forums, so everyone here self-selects as being the "difficult" ones, LOL. So I try to remember that a lot of people have lasting success, and I just have to find what works for me.... doesn't help on days like these but on other days I'm more optimistic!

Awww, I'm glad you have him to help at least.

Yeah, definitely, I try to keep all that in mind as well. Hang in there.
Posted 11/15/2019 9:36 AM (GMT -5)
Oh I get it, our minds run wild not knowing...been there...done that...hated it. Unfortunately, waiting for the test is your best educated-guess on what to do next. Heard some doing brilliantly on weekly humira. If you have to switch then remicade/xeljanz/stelara are all fast, 6-week or less for response, solutions.

My UC has always by cylindrical, as you describe. I'll have a week with 3-bms a day, the next week 2-bms a day, and it just goes up/down like that all of the time like waves do on a pond. My gasteroenteroligists over the years have verbally mused on that point, and left stumped over it. Must mean something lol.
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