Flaring again need advice

Hi all,

Following in from my previous thread, I’m now certain I’m flaring again and I don’t know what to do. For those of you who haven’t read my threads, I was diagnosed with moderate left sided uc in November 18 aged 25. I was put on pred and mesevant as well as salofalk enemas. To cut a long story short I ended up on pred for 7 months due to symptoms returning when trying to taper. I tried imuran but couldn’t tolerate so ended up on 6mp and eventually humira. Although I was eventually able to get off steroids and was significantly better, I have never felt really good or in a stable remission... I had a test to check antibodies for humira in June (2 months after starting) which came back fine but test in November showed antibodies so sometime between June and November I developed them.

I’ve now been taken off humira and am waiting to start remicade but I am flaring again and struggling to cope. I’m already on max dose of oral mesalazine, 6mp + allopurinol and have added in budenofalk enemas... I’m not sure what else to do. At the moment, my main symptom is cramps and feeling achy again but I know it’s onky a matter of time before it gets worse. Any suggestions?

Maybe you could try Uceris oral to help keep things minimal until you can start remi.

When I switched to remi from Humira after developing antibodies, my doc had me stay on Humira until I could start the remi. My last shot of Humira was a week before my first remi infusion. Any idea how long you might have to wait? Hopefully, it's not a long wait. I think I had my fist infusion in less than 3 weeks after the doc submitted the pre-authorization request to insurance. Hopefully your doc marked the request as urgent when they submitted it.

(I am doing pretty good on remicade now. It got me functional pretty quickly, but 100% remission is slower and it's taking me a long time to heal completely. I would say I am 99% of the way there -- occasional stools not perfect and every couple weeks I see traces of blood, but no D and only going 2-3x/day with a random 4x. I started in March 2019 and increased to double dose in August because I was still having too many symptoms. The double dose has been what I needed. ipoop said it took him a year to reach complete remission on remicade and I'm pretty sure it's going to take me a full year also)

It seems to be working for me. Yep, it has pretty much zero side effects. I read all about it and its side effects were similar to placebo side effects.

Why dont you just ask to have your Humira back while you're waiting?

Wow, that all makes NO sense whatsoever! Uceris (generic is budesonode) is SO much less harmful! I'm sorry you are having to deal with all these incompetent doctors.

That really sucks, I'm sorry. I hope that this doctor gets back to you soon.