Today I start my first Benlysta infusion.
I have been feeling off and on the past two weeks since summer started. Naturally I knew that my lupus would get worse after a week or two off of teaching, as the flares are always delayed.
I also stopped taking Cell Cept in May (after having taken it since September) because it was causing excruciating migraines that lasted 1 to 2 weeks at a time. At that time I restarted Plaquenil (they had taken me off it in March after I had been taken it since January 2013 because I was experiencing extreme nausea after adding the Cell Cept).
That being said, I have been feeling okay and taking 20 mg of prednisone a day, 10 in the morning, 10 at night. My joints have been sore and I was taking a mile walk a day with my dog in the mornings to try to keep moving. By night time, typically my body ached and it was difficult to fall asleep. A few nights I kept waking up in sweat after breaking night fevers and would have trouble falling back asleep.
Four days ago I was feeling a ton better, still on 20 mg of prednisone, but not as much pain. Then yesterday I took Tim's nephew and cousin to the children's museum for 3 hours. I felt fine energy wise, but when I went home to begin packing up my apartment for my upcoming move, I was exhausted and walking was painful for my ankles and going from sitting on the floor to standing was killer for my wrists.
Prior to my infusion, I feel very stiff this morning and overall just kind of crappy.
I want to update this daily so that I can best understand if Benlysta is working for me and also so that I can note anything that triggers flares (or makes them better).
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