I’m new to the forum and recently diagnosed with UC (6 weeks ago). I started my first flare without knowing it was a flare about
10 weeks ago. Eventually went to emergency after 4 weeks of what I now know was a flare, 21kg lighter and in extreme pain, 25 BMs per day and all of the other surprises that come with it. CRP = 188 and Calprotectin = 1200. Spent 2 weeks In hospital, Colonoscopy day 2 in hospital revealed severe inflammation in 80% of colon and moderate in rectum. apparently I wasn’t responding to prednisone fast enough so Inflectra was suggested. I had my first Inflectra infusion in the hospital without incident and I was discharged 3 days later. Upon discharge I had ~ 5-6 BMs per day and no more blood.
BMs slowly decreased although I still haven’t had a formed stool. Down to 2 BMs per day except for a few here and there. Went for my second Inflectra infusion 4 weeks ago, 3rd was supposed to be tomorrow. Ended up reacting during the second infusion, Chest closed, couldn’t breathe, high HR, severe lower back pain, sweats, and severe headache. We stopped the infusion and the reaction went away. Administered more steroids via IV and started the infusion again at 10ml/h. Continued to double the rate every 15min until 80ml/h at which point the severe lower back pain returned. I asked the nurse to reduce to 60ml/h and continued the infusion without further incident.
A few hours later I developed a sore throat and severe headache returned. I also felt super tired and fuzzy. All of these symptoms went away within 24 hours.
I was sent home on 60mg prednisone and have tapered down 10mg per week to 20mg and 5mg per week until done. Currently on 15mg as of today.
Bloodwork was done by accident, blessing in disguise as the results revealed that I had developed antibodies and the Inflectra levels in my body were too low. My doctor suggested I move to Humira which I accepted. I have my first Humira treatment tomorrow and very hopeful that it works for me.
I have a very detailed food, weight, supplement, and stool tracker going in excel. Still working through all the different foods and things that work for me. I’ve read a ton of posts on here to research this new condition. Still dealing with the emotions and the possible impact on my personal and professional plans for the future.
In addition to prednisone, I take the following supplements, minerals, and amino acids:
I also try and have bone broth every day.
I think I’ve covered the basics for an intro and I very much appreciate all of the info that everyone has shared. It’s been a great help to me already.
Post Edited (QuantEntangled) : 5/23/2020 6:12:47 PM (GMT-6)