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All communities will be placed in read-only mode (you will be able to see and search for posts but not start or reply to discussions) as we conduct maintenance. We will make another announcement when posting is re-opened. Thank you for your continued support and patience, and if you have any further questions, please email

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dozzi posted:
5 days ago I ask anyone about what they tell me how they felt after getting benlysta no replies is there anyone out there with any input
Elizabeth_WebMD_Staff responded:
Hi dozzi -

The community has been a little slow this week, so while waiting for other to respond I wanted to pass along a couple of older discussions -

Benlysta anyone tried it?
Dr. V - question about Benlysta

Hope this is helpful,
yogogal responded:
I felt fine after my initial infusions (the 3 -2 week apart ones). I had a little dizziness and nausea, but my hip and foot pain was improved. For a week and a half prior to my first 4 week wait I felt awful. I had much dizziness, nausea, and horrible fatigue. Immediately after my infusion, I felt better. I still have mild dizziness but it is not bad. I am not quite 2 weeks post infusion and hope I don't have a repeat of the previous symptoms. I am having a lot of fluid retention that my Rheumatologist does not believe is related to the Benlysta. I am currently the only patient this practice has on Benlysta so I believe they are learning along with me.
tigermom23 replied to yogogal's response:
Hi, I have just finished the 3 bi-weekly treatments.....lets just say that the first two were horrible on side effects. I did notice a lessening of pain, the side effects didn't last as long after the first two. I am feeling better than I have in a while...but as the weeks go by until my first monthly infusion I am starting to have an increase in the pain and joint swelling....and all the normal lupus side effects. I can't wait for the constant dose in my body so it can regulate the pain control....hopefully. Good luck!

Thank you, Good luck, and God bless
ida507 replied to tigermom23's response:
I have been approved for this treatment but havent started it yet. Im getting really nervous about it. Ive had a flare for over a mth. now and I feel rotten to say the least. Do you think this benlysta is going to help you?
ida507 responded:
Im really wanting to know how it is working for everybody. I havent started my treatments yet and I'm a little anxious about it
tigermom23 replied to ida507's response:
yes, I really think it will.
Thank you, Good luck, and God bless

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