January 5, 2016

All About Benlysta

Yesterday I had my second Benlysta infusion. It went very well: I wore a tiara, a warm handknit sweater, and brought a warm blanket (cold room + cold IV = double cold Summer).

A very nice person in my local Buy Nothing group gave me this beautiful tiara

The infusion process:

IV is started (easy peasy when you have an excellent infusion nurse)
Benadryl is run (caused phlebitis last time so it was diluted before being run w/ saline)
IV machine beeps a few times, for various reasons.
Benadryl makes me dopey so I insert headphones, wrap up in blanket, and relax
Benlysta is started--the main event!!!
Benlysta takes an hour so I fiddle with my iPad, listen to music, and chat with the nurse
Few more interspersed machine beeps

Then it's done: IV is removed, arm is wrapped, and I go home

This week was extra special because the wrap matched my sweater :)

So far my side effects are:
Post-infusion fatigue, though it hasn't kicked in this time (Yay!)
Insomnia. I doze in bed for hours but can't fall asleep before almost crack-of-dawn-o'clock
Nausea and loss of appetite

I'm hoping these fade as my body adjusts to the new med. Especially the insomnia.


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