So I had my third Benlysta infusion recently and things are seeming like their going to go okay being on this med (can I get a *woot woot*). The day of the infusion as well as the day after are difficult. It makes me SO. TIRED. And tired in a whole other way than lupus/fibro tired, if that's even possible. I get pretty nauseous too, but that has gotten a little bit less after every infusion.
I wouldn't say that my hair loss has stopped (because it definitely hasn't), but I would say that it has slowed down. And I actually have my little "lupus halo" around the top of my head where little baby hairs are growing in. The chronic chest pain that I have has diminished and I'm slightly less achey on a regular basis. The biggest thing that I've noticed, however, is the change in energy level. My energy level and endurance are dramatically better. Compared to a normal person, I'm probably still sluggish, but compared to my normal lupus self, I have energy for days.
The downside is that my immune system is compromised and I am seeing evidence of that in various ways, which is a little scary. Especially since I'm a nurse who is in the face of sick people every day.
I'm now done with the loading doses that come every two weeks and have moved up to the once monthly infusions. Hopefully, this continues on a great course and I continue to see great things from it.
lurve you, xoxo v.