Posted 12/27/2016 2:02 AM (GMT 0)
Hi all, been awhile since I've been on the forum but all has not been well.
I had a full scope in Feb and disease was unchanged from initial diagnosis of proctitis. Fast forward to July, after taking cipro for a kidney infection things started to go downhill fast. I ended up on Pred for the first time, then Remicade, and still felt terrible. After having a reaction during my third loading dose of Remi doc sent me to hospital where I spent a week on IV steroids and antibiotics. (also given false diagnosis of c. diff, so it was gowns and gloves the entire week for everyone). They did a flex sig but got much further in than expected due to good visibility (aka 20 BMs a day = pretty cleared out bowels). The inflammation and ulcers are/were so deep and severe the doc initially thought it could not just be the colitis, but a viral infection - but the biopsies came back negative and it's just how bad my colitis has gotten in a matter of months.
They upped my pred to 40mg, I'm currently tapering and at 25mg and had my first dose of entyvio last Wednesday. I've got a ton of salofalk enemas in my closet and wondering if it's OK to use them in the meantime while getting through the loading phase of entyvio, or if I should not be using them so I can see if the entyvio is actually working or not.
As a side note, I'm also kinda terrified of the next few weeks of tapering pred because when I got to 15mg is when crap hit the fan, so to speak, and I got really ill last month. I asked my doc about a more gradual taper when i hit 20mg, and he was like don't worry about it. (I talked to my GP and she said cut the pills in half, since I'm the one taking them and not him).