Benlysta

General
1

Has anyone tried benlysta? I am starting in 2 days and am anxious…excited…nervous! Looking for any feedback on it. I’m allergic to plaquenil and imuran is erasing my WBC count

2

Hello Kenzz,

I've not taken Benlysta but there is other members who have and will answer you in due course but we have had discussions on here about the drug and i'll add a couple for you to view.

I wish you the best of luck when you start it and please keep we updated on how your going.

http://forum.lifewithlupus.org/forum/topics/benlysta-4

http://forum.lifewithlupus.org/forum/topics/benlysta-i-just-started-this

((Hugs Terri)) xxx

3

Hi Kenzz06

I know your post is older but I am going to be starting Benlysta this week and I am wondering if it is working for you. Seems like it works for some folks and not for others. Did you have any side effects? Were they worse with the first treatment or two?

Thanks for your feedback,

Meg

4

I have received 5 infusions now. I feel great on it (decreased fatigue, ill feeling, skin rash, joint pain). I receive 2 benedryl and 2 tylenol prior to my infusion. Initially i felt drowsy and just out of it (after my first 2). I had a headache a few times. But I requested they do my infusion slowly (over 2 hours instead of 1 hour) and I got a bag of saline. This really helps with side effects. I now get it over 1 hour and decreased to 1 benedryl. There is a group on facebook called benlysta buddies. I have found them to be great support! Check it out...there is lots of info available on there.
GOODLUCK!! Let me know if you have other questions

5

Hi was on it for 6 months. I saw no improvement... I hope that this works for you- prayers.