Posted 5/10/2018 1:08 PM (GMT -6)
I guess "active refractory disease" means your Lupus is active and resistant to all attempted treatments, is that also your understanding?
I wonder if there is another form of Belimumab by another manufacturer (ie not trade name Benlysta) that wouldn't give you anaphylaxis? That would probably be from another country if it even exists. I know when Butterflake was doing Benlysta she had to take strong medications in conjunction with it to control her anaphylactic reaction.
I see that Rixutan (rituximab) in mentioned in the last paragraph of the Wikipedia article on Belimumab - it also mentions Atacicept, BR3-Fc, and a couple of other things as addressing "B lymphocyte hyperactivity" like Benlysta does. These things all seem to be in development, I would imagine that's why you Dr hasn't mentioned Rixutan... but you might want to look into some of these other options. If they are even viable options.
I know I have seen something about Rixutan in conjunction with Lupus somewhere, but I'm not able to remember when, where, or who. I will keep looking and let you know if I find any information.
So sorry I don't know more, and we don't have nearly the number of active Lupus patients as we used to here. But maybe this will strike a cord with someone.