I was just reading about this as a Lupus treatment. Anybody on it or know anything about it?
What Im currently on just isn't cutting it, curious if this would be an option. Yes, I know, discuss it with my Dr but I'm looking for any personal experiences anybody might have with it.
I know it works by decreasing the life of B-cells which tend to be the hyperactive ones that give us all of our problems. It can weaken your immune system so just remember to wash hands and wipe down the phone and door knobs when people around you have been sick, that type of thing. Also, you should not receive any live vaccines while on Benlysta. I think it is done via IV infusion. It has about an 8 weeks onset. Side effects can include: depression, migraine, insomnia, nausea, diarrhea, bladder infection, leukopenia (low white blood cell count... hence the risk for infection), pain in the extremities, and infection risk. I got all of this from my drug book for school. Hope this helps a little bit, I'm sure you've probably already found most of it on Google though. A few people on here have been on it or are still on it, so I hope they can give you more answers.
Hi Flutter,
I was on Benlysta for a few months this year. It was covered 100% by my insurance and this is important because it is VERY expensive. It is done by IV there is 3 loading doses and then you get it once a month. It made me tired the day of the infusion. My doc took me off of it because I got reoccurring infections (ear, sinus, chest) the last month and a half I was on it I was always on antibiotics. There is a facebook group Benlysta Buddies who are a great resource and support for those on Ben. Many people think it is a miracle, I didn't have enough time on it to say if it was working.
Meg
I am waiting on my insurance to approve it. This is the web site of the makers
Make sure you read all the contradictions there are some I plan on discussing with my doctor before I start it. That is if my insurance approves it. They have been fighting it for a month now.