Benlysta - anyone here used it and had any luck?

Louweed

New Member

Joined : Jan 2020

Posts : 1

Posted 1/16/2020 10:47 PM (GMT 0)

Curious to hear people’s experience with Benlysta. I’m still trying to get approved so in the meantime if anyone can share their expectations good bad or otherwise thanks!

Lynnwood

Forum Moderator

Joined : May 2005

Posts : 8160

Posted 1/17/2020 9:52 PM (GMT 0)

We've had at least 2 members in the past who tried Benlysta. Unfortunately they were both extremely ill and moved on to IVIG and still had extensive complications.
We don't seem to have any currently active members, sorry. You may try the websites https://www.lupus.org, https://www.lupusresearch.org or other lupus organizations to see if they have more active Lupus Forums. I'd search for "Lupus Forums"

BlueDestiny

New Member

Joined : May 2020

Posts : 2

Posted 5/20/2020 12:53 AM (GMT 0)

I've been on benlysta for a little more than a year now. I use a grant foundation for copay assistance, it would've been over 1k a month for it otherwise. I have found it helps me greatly, but the day after I do my injections (methotrexate and benlysta - both at home injections) I am rather tired feeling. But it only lasts a day or two. Any questions, just let me know.

-Blue-

Stones

New Member

Joined : Mar 2006

Posts : 14

Posted 3/14/2021 4:26 AM (GMT 0)

I just had my first shot a few days ago with the preloaded pen. A little nausea was all I can report at least thusfar. My MTX shot is far worse, I'm out for most of a day with that.

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