Results 1 to 4 of 4

Thread: Benlysta Failure

  1. #1
    Join Date
    Jan 2013
    Posts
    92
    Thanks
    3
    Thanked 28 Times in 18 Posts

    Default Benlysta Failure

    Just wanted to give you all some info on my experience with Benlysta. I had been getting the infusions for the last year almost, and my doctor and I thought I was doing better and my labs even improved some.
    Well I just had a HUGE flare and I am still dealing with it. I ended up with a new and very good doctor who is experienced with lupus. He said he doesn't like Benlysta, he doesn't feel it's worth the $$ and if anything Benlysta might be good for someone who has their lupus under control and uses it as a maintenance drug. But that would be very expensive. All my invoices from the Iv therapy I went to ranged from $15,000-$17,000 every 4 weeks!!
    With this flare I was dx with stage 4kidney nephritis, so that doctor took me off Benlysta immediately and now I'm on prednisone and Cytoxan treatments. My old rhuemy didn't pick up on any of this, I had weight gain, and he kept saying it was from the Benlysta and I just had to deal with it, there was even some markers in my urine tests. I'm glad I went to this new doctor before it became any worse!

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,914
    Blog Entries
    1
    Thanks
    1,393
    Thanked 1,617 Times in 1,107 Posts

    Default

    I m sorry you are having these complications.please keep us informed as to your progress.hopefully now you are getting appropriate treatment for your kidney, the damage can be minimised.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. #3
    Join Date
    Dec 2009
    Location
    Atlanta Area - Dacula and Boca Raton
    Posts
    1,812
    Blog Entries
    12
    Thanks
    378
    Thanked 402 Times in 325 Posts

    Default

    Hugs and good thoughts being sent your way. Glad for the new dr.

  4. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,713
    Blog Entries
    9
    Thanks
    1,575
    Thanked 919 Times in 582 Posts

    Default

    So sorry that you are going through this. Please keep us posted on how you are doing and what, if any, changes you make. {{{warm hugs}}}


    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •