Okay... short version...
Previously, I was receiving infusions every 16 weeks or so. IV Benadryl and 2 tylenol tabs pretreatment. No saline flush. Nothing to complain about
afterwards except a little kidney pain, and maybe a little fatigue the day of and the day after an infusion. Oh, and a touch of gas... I always feel a little farty for a couple days after... No big deal, right?
I went into a flare this cold/flu season and had to up my Remicade frequency to every 8 weeks until I'm through the other side of this flare. Moving to a new state with new insurance and doctors caused the lapse in doses that caused the flare to begin with.
I got infused at a new place, with a new nurse, and a new procedure. They didn't premed me with IV benadryl. Instead, they gave me a single 25mg pill. And the nurse gave me a few minutes of a saline flush afterwards. I felt fine for a couple of days and then...CRASH!
I am SOOOOOOOOO tired it's stupid. I feel like I've been hit by a tractor trailer. I HATE feeling like this. But, what I hate even more, is the possibility that this feeling is caused by the Remicade, and that it's not a good sign. And, in addition to not wanting to get out of bed - I have THE WORST GAS I HAVE EVER HAD! Ohmigod. It's awful. I almost left work early today because my guts hurt so bad - and it was that sharp-gassy-poking feeling. Even when I'm in private and have the freedom to "rip one", it seems the gas would prefer to poke about
in my guts instead of providing me some relief by exiting the building!
I'm tired of connecting the dots in my head because I don't like the picture I get. What do you guys think? Has this happened to any of you? What I WANT to hear is that this is all just because they didn't premedicate me in the same manor as my body was used to. What I'm AFRAID of hearing is that this is the beginning of the end for me and my mouse juice. I'm giving myself until Monday before I call the doc.
Any thoughts or advice?
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered.
"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."