View Full Version : Benlysta Failure

04-26-2014, 07:26 PM
Just wanted to give you all some info on my experience with Benlysta. I had been getting the infusions for the last year almost, and my doctor and I thought I was doing better and my labs even improved some.
Well I just had a HUGE flare and I am still dealing with it. I ended up with a new and very good doctor who is experienced with lupus. He said he doesn't like Benlysta, he doesn't feel it's worth the $$ and if anything Benlysta might be good for someone who has their lupus under control and uses it as a maintenance drug. But that would be very expensive. All my invoices from the Iv therapy I went to ranged from $15,000-$17,000 every 4 weeks!!
With this flare I was dx with stage 4kidney nephritis, so that doctor took me off Benlysta immediately and now I'm on prednisone and Cytoxan treatments. My old rhuemy didn't pick up on any of this, I had weight gain, and he kept saying it was from the Benlysta and I just had to deal with it, there was even some markers in my urine tests. I'm glad I went to this new doctor before it became any worse!

04-27-2014, 11:20 PM
I m sorry you are having these complications.please keep us informed as to your progress.hopefully now you are getting appropriate treatment for your kidney, the damage can be minimised.

04-28-2014, 05:09 AM
Hugs and good thoughts being sent your way. Glad for the new dr.

05-04-2014, 09:40 AM
So sorry that you are going through this. Please keep us posted on how you are doing and what, if any, changes you make. {{{warm hugs}}}

Peace and Blessings