I started Benlysta infusions in late December 2015. Initially I had unpleasant side effects like insomnia, intense headaches and GI upset, as well as some post-infusion fatigue. The insomnia has improved and I've found a medication that lets me sleep. The headaches faded then essentially stopped, but it took 3-4 months for that to begin. In general I've been very lucky with side effects and no longer even feel fatigued afterward.
For many months I didn't know whether Benlysta was helping, or whether it could help. It's approved for lupus but what I have doesn't fit into a tidy diagnostic box. I'd have days or weeks of decreased fatigue or joint pain, but was that coincidence or the treatment? No way to be sure. There were also weeks or months where I felt like I'd had no treatment. The rollercoaster nature was intensely frustrating.
But at 7 months I can say that I do feel consistently better. I have much more energy: I've made friends and get out many times per week. I can stay awake all day, clean my home, and run errands without hitting a wall of pain and exhaustion. Joint pain has improved enough that I can walk reliably, and I've been taking the bus much more frequently. I've been dating with success. Benlysta has given me hope for the future.