One Patient's Positive Perspectives

St. Joseph's Hospital, Phoenix, AZ

Well, today was Day One for my Benlysta adventure!

After returning the rental car I have been driving all week, I picked up my newly repaired car from the Chrysler dealership.  From there, I set out for downtown Phoenix in the blistering heat of the day, and arrived early (amazing!) at the hospital.  I pulled into the large medical center campus, picked up a parking ticket at the entrance and quickly navigated to an open handicapped parking spot on the ground floor of the multilevel parking garage.  I headed up the elevator to the cancer infusion center, and checked in early.  I waited for about 30 minutes in the lobby, chatting with another patient as we enjoyed the vivid colors of some salt water fish in an enormous (200 gallons?) tank! The whole effect was soothing and calming.

I looked around the waiting room at a number of different materials about different types of cancer, and the support group resources and flyers on display.  I was curious to see if there was anything about lupus. My rheumatologist said that this hospital is currently the only location in Phoenix authorized to administer Benlysta infusions.  It seems logical that all the patients receiving Benlysta will pass through this waiting room.  This got me thinking…

I wondered if maybe the infusion center would permit adding some brochures about the Lupus Foundation of America on one of the tables.  I will have to ask them about the protocol for that, but not today, maybe at my next visit.  It seems I am still lamenting the recent demise of our Arizona chapter of the Lupus Foundation of America, after it lost most of its financial support due to the recession.  I feel somewhat compelled to see if there is something I can do to make sure the local patients are at least getting access to online support resources.

Well, after a little wait, I was shown to the infusion room.  Soon I was comfortably seated in a recliner, looking out the 6th floor windows at the downtown skyline and mountains in the distance.   As Elaine the RN prepared me, we reviewed information about Benlysta while she worked.  We got to talking about the biological differences between Rituxan and Benlysta.  Rituxan, which I had previously in a clinical trial was a murine (mouse) monoclonal antibody, and Benlysta is a human monoclonal antibody.  Nurse Elaine said that a human monoclonal antibody would have less likelihood of reactions than a murine antibody.

Hooked up to the IV

With my arm on a pillow, hooked up to the IV and infusion pump, I pulled out a packet of flash cards for the upcoming certification test I will be taking in 3 weeks.  As I reviewed information for my exam and received the Benlysta, I felt no unusual sensations or discomfort.  The whole session was smooth and uneventful.  My first Benlysta infusion was soon over without a hitch.

Getting up from the chair, I felt briefly light-headed, but it passed quickly.  The sensation returned once in the elevator, but has not come back since.  Back in my car, I was glad to be ahead of most of the Friday evening rush hour, and soon back at home.  Benlysta adventure Day One was done!

FYI – If you want to understand more about Benlysta and Lupus, here’s the skinny on what I understand about how Benlysta is supposed to work — translated into the plainest English possible — derived in part from highly technical information on the Human Genome Sciences (HGS) web site…

  • Benlysta is human monoclonal antibody designed to go after one specific thing, BlyS protiens
  • BLyS help the B-lymphocyte cells turn into mature plasma B cells
  • Plasma B cells make antibodies that attack infection
  • Some BLyS proteins are normal, but in lupus there are WAY too many
  • In lupus, too many BLyS confuse Plasma B cells into making bad auto-antibodies that kill good cells
  • More bad auto-antibodies means more severe lupus
  • Benlysta distracts BLyS proteins and keeps them busy away from the Plasma B cells
  • Reducing the bad auto-antibodies helps quiet down lupus

Comments on: "Benlysta Infusions for Lupus – Day One" (7)

  1. Purple Queen said:

    Looking for any advice on Benysta treatment

  2. Charlotte Allen said:

    I will begin my first treatment June 23, 2015. I am in a serious flare right now and have been having extreme fatigue issues. I have mixed-connective-tissue disease with mine because I also have Rhuematoid Arthritis.

  3. I started my Benlysta infusions Thursday, some fever and chills but nothing like a flare!
    I slept almost the whole day but it felt like a healing sleep. But it is 2:30am and here I am
    so I will wish and hope and keep taking the infusions.
    I am so glad to find a family here on the same journey

  4. Caroline Snow Rader said:

    I just stumbled across your blog and was thrilled to do so!! I am waiting to hear when I will start my first Benlysta treatment. I am in a horrible flare right now so I am more than ready. Your writings give me such encouragement and hope! I am also a believer and know that all things will work together for HIS GLORY!

    • lupusadventurer said:

      CSR: Thank you so much for your comment, and encouraging feedback. Please let me know how your infusions go! LA

  5. Gosh I was really worried about my first infusion but this infor was great thanks for sharing.

    • lupusadventurer said:

      I trust you will find your first infusion equally smooth-going. Give it some time, it took several months before I really began to feel the improvements. Best wishes in this new lupus adventure! LA

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