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Good initial results on medicine, then a setback ... I sure need some perspective...

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Ulcerative Colitis
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Posted 8/25/2019 2:56 AM (GMT 0)

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??)

*************
Currently taking:
Humira injection once every two weeks
S. Boullardi
Lactobacillus
Zoloft

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

Diagnosed 2002
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.
Posted 8/25/2019 12:02 PM (GMT 0)
I've not heard of Humira in pill form. Are you maybe talking abut Xeljanz? If so from what I have read here from people are using it it appears to be about 50/50 whether it works or not.

Since you had a good initial response to Humira, your doc could change the frequency to once a week and if that doesn't work you could change to remicade. That's what happened to me. I developed antibodies to Humira, but seem to be responding better to remi. Still was having a good bit of symptoms (though a 1000 times better than on Humira) so doc just increased the dosage of remi. Now after a week of the increased dose things seem to be improving already so I am hopeful that remission is on it's way.

You should probably get a test to check your Humira levels and then go from there. If you already have antibodies, increasing the dose isn't likely to help. There are several people here who take weekly Humira injections and are in remission so I wouldn't give up on it yet.

Some docs say when you fail Humira that Remicade won't work either, but while they are similar meds they are also very different. For me I think the difference that is the biggest factor is that Remicade is weight based so dosing is more customized for each patient whereas Humira everyone gets the same dose.
Posted 8/25/2019 2:14 PM (GMT 0)
Thank you for your response! I won't give up on it yet then. It helps a lot just to have another person (besides my doc and my hubby) to assure me that things might still change for the better.

To answer your question at the top: My doc says that the Humira pill is super new so it might not be well known yet, although yeah, I could be remembering wrong, and it IS the Xeljanz pill he was talking about.

It is strange that I would be doing a bit better and then do poorly again but I'll chalk it up to "two steps forward, one step back" ....
Posted 8/26/2019 12:50 PM (GMT 0)
I don't have personal experience but some doctors add an immunosuppressant like 6mp to their biological medication.
Posted 8/26/2019 3:50 PM (GMT 0)
I would ask about:

1.) Adding a thiopurine to Humira (that is azathiopurine/imuran or 6MP).
2.) Getting a blood test for humira levels:
https://www.labcorp.com/test-menu/18766/adalimumab-concentration-and-anti-adalimumab-antibody-serial-monitor
Posted 8/26/2019 4:46 PM (GMT 0)
I can relate. I had a weird week on Stelara but otherwise I am doing great on it alone. I was diagnosed same year as you. Never thought I’d go to a biologic but ended up needing it. I failed Remicade and Entyvio. I say that so you know other people fail things and eventually find success. I used to take Zoloft but my GI thought it tended to cause diarrhea. Although I don’t think it ever did that for me. But managing stress and anxiety is a big factor in my flares. So you may want to talk to the dr more about treating it because addressing that can help you physically. Please know it’ll get better even if eventually you have to test something else, that’s ok! smile
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