Add me to the Benlysta train

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Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 10/29/2012 2:02 PM (GMT -6)   
Hi Everyone. I tapered down to 5mg of pred as my rheumy wanted while taking 1500mg Cellcept daily. The end result has been that I felt like dog poop and moved about as much. So today he gave me a depomedrol shot and will be submitting the paperwork to my medicare and insurance for approval to start me on Benlysta. I'll keep you posted. Love, Butterflake 

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 10/29/2012 2:41 PM (GMT -6)   
Oh, my. Talk to Barbara Lee, she has found a support group just for Benlysta which I'm sure she'd be glad to email you about. (After the hurricane has passed, she's in it's path!!)
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/30/2012 12:16 AM (GMT -6)   
Hey Donna:

I will be glad to give you the site info. I can't say much about the drug yet. I was due for my next infusion today, but with the storm, the military hospital I go to closed all outpatient care for yesterday and today.

I can tell you that I had a reaction with my first infusion about 15 minutes into it. I eventually was able to get the whole infusion but we were at the clinic from 9 to 5. I was also totally wiped out for about 5 days. Please let me know if I can answer any questions.


Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 10/30/2012 1:03 PM (GMT -6)   
Hey Barbara. I currently sleep 12 to 18 hours each day, so I hope I can handle being totally wiped out. I'll send you an email. Plus I'm sending you blessings and lots of positive energy for your illnesses and huricane Sandy. Love You, Donna

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 10/30/2012 1:15 PM (GMT -6)   
Hey Barbara. I just noticed your email address isn't available. When you get a chance will you email info on the Benlysta support group to me? Just click on my name or the envelope next to my name. Love You! Donna

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 10/30/2012 8:57 PM (GMT -6)   
Hi Donna,

So far, I have had good luck with the Benlysta. I am completely off of the Prednisone. I did have difficulty this past body finally reacted after a week of no Pred. It was like a huge reminder of why my body loves Prednisone. I experienced severe pain and stiffness in every joint of my body. It got so bad I could barely walk from the couch to my kitchen. And that old nemesis, fatigue, was back like an old trickster. By Monday morning it was as if the fog had lifted and I started to feel like my old self. I go in for my fifth treatment next week. I truly want this drug to work!! If you have any questions or need to talk, please don't hesitate to ask. This forum has helped me a great deal.

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