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Earnest
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/3/2011 9:33 PM (GMT -6)   
I started Benlysta 3 weeks ago. It is the new drug approved in March to treat lupus. Is there anyone in this community who is presently on it? I would appreciate feedback.

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 8/3/2011 9:46 PM (GMT -6)   
Hey Earnest. If you click on my user name to the left of the box, you will find my email address. I have some information I would like to pass along if you are interested. Please title the email along the lines of Benlysta or healing well, So i know it is not spam!!!!
Amy
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 8/4/2011 12:40 AM (GMT -6)   
Hey Earnest! I have actually been on Benlysta for the last 3 months and it seems to be helping me. My energy levels have improved and I have now gotten down to 4mg. of prednisone. This is my lowest dose of prednisone and just 2 weeks ago I was on 8mg. I hope that this is the drug for me and it seems to be working wonders! It took about 4 treatments before I saw results though.

Earnest
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/4/2011 8:51 AM (GMT -6)   
Thanks aimsgirl and bigsanfer for your response.

I will be on my 3rd treatment next week. My normal BP ranges 90-100/60-70. When I go for the treatment my BP goes down. On the first treatment they had to give me IV saline before the infusion just to bring it back up. I also noticed I feel tired during treatment and feel less energetic for few days after. Also my lupus seemed to have flared up. Had dry eyes, arthritic hands, swelling of the lips, and fair appetite. My maintenance dose of prednisone is 7 mg. I sure hope eventually it will turn around for me and minimize the flare ups. I have to take extra care as this lowers immunity.

Thank you both for sharing.

AZ N8ive
New Member


Date Joined May 2011
Total Posts : 11
   Posted 8/4/2011 6:50 PM (GMT -6)   
I start Benlysta tomorrow. My rheumie has one of the nurses involved in the clinical trials working for him now. She says I have nothing to worry about, but that has not sopped me!
Ann

Earnest
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/4/2011 7:23 PM (GMT -6)   
I'm happy for you AZ. I would suggest get someone to give you a ride on your first treatment because I felt weak and tired after infusion.
I just learned there are other people who also had the same problem. With me the tiredness lingered for few days. I was also a little dizzy afterwards.
My low BP might have contributed. Good luck! If you don't mind I would like to give you additional information and will send to your email. I will put the
subject Benlysta on it.
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