Welcome to WHL. I have never taken Benlysta either. I am sorry, that you have had such a bad experience with it, it must have been very scary. I agree with Marla, your doctor should report your side effects to the pharma company, it is such a new drug and they need to know about ALL possible side effects.
I don't blame you, for not wanting to take it again.
Hopefully your doctor, can find a better fitting med for you.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).