Posted 8/24/2019 7:56 PM (GMT -7)
Hello all, thank you for reading!
Five weeks ago I started Humira. (After a couple pretty good years, a rough flare started in June, and in July a colonoscopy confirmed that my previously left-sided UC had recently become pancolitis. Prednisone, which used to work for me, stopped working, and Asacol never worked for me. Several weeks of Canasa and also the steroid rectal foam had no effect.)
After three weeks on the Humira I had a turnaround in my symptoms and the blood went away, and my frequency dropped from 6-7 times a day to 2-4 times a day, with increasingly firmed stool.
Then last Saturday I suddenly went 7 times a day again, and the next day I started seeing blood again. Ever since then, it hasn't gotten worse, and the blood has gotten slightly less, but the frequency still ranges from 4-7 times a day. I'm an emotional wreck because I felt like I was SO CLOSE to feeling normal again and being able to go to the park with my kids again without being terrified of an accident. I knew that Humira might not be a silver bullet but my symptoms were really improving!
My doc had a blood test ordered, and my inflammation markers are up, but not terrible yet. I'm doing a stool test tomorrow and I think we will go from there. I haven't been on Humira for three months yet and I'm aware that typically you have to test biologics for three full months before scrapping them as an option. So I'm guessing that unless the stool test shows an infection, we'll continue with the Humira....
So my question is: has anyone else experienced a "two steps forward, one step back" pattern of improvement while on a biologic? I was kind of thinking -- possibly just wishful thinking and not grounded in any facts -- that it would work differently from other medications and any improvement would be steady. Should I prepare myself for scrapping Humira altogether or keep optimistic?
I was putting off biologics for so long because I considered them a last resort, and now this might not even work. In the meantime I'm such a wreck I am considering upping my anxiety medication.... Any experience you'd like to share, bad or good, helps me feel more informed and a bit calmer so thank you for anything you can reply!
(Follow-up questions I can't help but post: If Humira falls through, I think my doc would be open to Flagyl if I push for it. Or Remicade might be the next step, OR the new Humira pill if my insurance approves it. I know one person who has responded really well to the Humira pill after the Humira injections failed her. Any intuition on which one might be the best bet??)
Humira injection once every two weeks
These have proven over the years to NOT help me get out of a flare:
Asacol pills, Imuran, Canasa, Steroid rectal foam, prednisone, mesalamine enemas, acupuncture, various homeopathic treatments, strict raw food diet
Until this year, 40mgs of prednisone tapered slowly over the course of a few weeks would get me out of a flare. Sometimes I've gone couple years without a flare. Currently in a flare since June, dealing with anxiety and exhaustion from this one.