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Benlysta infusions for Lupus after two and a half years

Posted Jan 14 2014 12:27pm

Waiting for morning fog to lift

Last week I drove to the hospital on a Thursday morning.  To get up in time to drive safely, despite my CNS lupus, I had to arise extremely early that morning.  So early, it was practically the middle of the night!

To be clear-headed enough to drive, sometimes takes several hours.  While waiting for the mental fog to lift, I take medications, exercise, drink coffee, shower and hope the fog “burns off” early.  Setting an early morning medical or work appointment means getting up long before the crack of dawn to start my daily brain-summoning rituals.

Getting infusions back on schedule

Usually, my Benlysta infusions are every fourth Friday.  My local government employer shuts down all the buildings and turns off utilities on Fridays, and most of the other employees work a four-tens schedule.  The offices are open Monday through Thursday from 7:00 a.m. to 6:00 p.m.  These hours work fine for everyone else, but for a middle-aged gal with lupus and CNS involvement, 7:00 a.m. is downright un-doable!  I am grateful that my employer has agreed to extend my ADA accommodation to permit a workable alternative schedule.


Working an accommodated schedule

So, I work in the office for the last seven hours of the normal business day, and an extra hour after everyone else goes home, and I work from home on Fridays.  This works extremely well from a lupus standpoint.  However, there are some challenges with this schedule for me as a supervisor, because staff are working for three hours before I arrive.

I try to schedule as many of my medical appointments as possible on Fridays, so when I am taking time off for health reasons, it has minimal impact on my availability to coworkers during core business hours.  A few months ago, my scheduled infusion date arrived while I was hospitalized getting intravenous antibiotics for a whopper urinary tract infection, so my infusion had to be postponed until after I was released and finished taking antibiotics.


Rescheduling Infusions

Over the course of receiving Benlysta for my lupus, there have been several schedule adjustments.  Once, for bronchitis it was delayed a week.  Then, for a trip out-of-town on business, it had to wait until the Monday I came back.  Once, a bad sinus infection delayed my infusion for a week.  Recently, we visited our son, his wife and their family over a long weekend that fell during my normal infusion Friday.

Infusions can be later but not earlier

With Benlysta, getting the infusion earlier than four weeks from the previous one is not allowed.  So, when the schedule gets interrupted, the infusion is always delayed instead of happening earlier.  I always try to keep from postponing delayed infusions for a whole week.

Because of the way Benlysta works, the Blys proteins come back quite quickly when Benlysta’s effects wear off.  I have noticed that an extra week between infusions isn’t a good idea, because my lupus quickly starts to kick into flare mode before the extra week is over.  But, after only a couple of extra days’ delay, no so much!

My normal strategy has been to shift the infusion schedule back toward Fridays over the course of a couple of months.  I try to reschedule the first month on a Monday, the following one on a Tuesday or Wednesday, then Thursday, until I finally back to a Friday infusion schedule.  So, starting next month, my infusions will once again be back on a Friday schedule.  This is what works the best for me, so I am always glad to get back to this routine.

Changing routines has its benefits


Multi-tasking while infusing

There has been nice benefit of temporarily changing the schedule and time of day for my infusions.  Over the past couple of months, I got to know some different infusion patients than those I usually see, and met a couple of nice new nurses.  One nurse I really liked was on loan from the hospital’s cardiology unit, and we had a great time visiting and getting to know each other.

She also mentioned something new to me about the Benlysta dispensing instructions.  Usually, Benlysta has always been prescribed for infusing over a one-hour period.  However, on the medication label on the bag, instead it called for dispensing the drug over two-hours.  So, the nurse followed the written instructions while I made myself comfortable and settled in for a little longer stay.

As a result, I had time to write a personal letter while waiting for the lab to prepare the infusion.  Then, I had enough time to log in with my tablet computer and get in a couple of hours telecommuting from the hospital, catching up on email and work.  I always enjoy any opportunity to work with my feet kicked up in a recliner, sipping coffee, while looking out a beautiful picture window at the city’s skyline.  I was truly multi-tasking, and didn’t mind it one bit!

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