three weeks into Benlysta now and the labs are actually moving the right direction, anti-dsDNA coming down, C3 climbing back up. what nobody mentioned at the infusion center is what happens at the injection site itself. second dose, subq in my thigh, and by hour six I had a raised welt about the size of a quarter, hot to touch, itchy enough that I almost scratched through my scrub pants during a patient consult. by the next morning it was a bruised looking patch that stuck around for four days.
first dose didn’t do this at all, just a little redness that faded in an hour. here’s the thing about being a PT who sees patients all day, nobody at work knows any of this is happening. I’ve got long pants on, I look normal, I’m doing goniometry and gait training like always. meanwhile there’s a hot itchy welt under the fabric that I’m very aware of every time I bend down.
that’s the whole invisible illness problem in miniature, the version of me people see is not the version dealing with the actual thing. I started logging the reaction size and how many days it lasted in CareClinic alongside my flare entries, and pulling up the chart at my next rheum appointment is going to save me trying to describe “quarter sized, hot, four days” from memory three weeks later. my rheumatologist’s office said reactions can lessen after the first few doses but wanted me to flag it if it gets bigger or doesn’t fade. anyone else on Benlysta have this happen, does it actually calm down by dose four or five, and did yours localize to one specific spot or move around each time?