Benlysta Adventures or How Much Did You Say?


As I have stated before, I was in the drug trials for Benlysta, the new drug approved by the FDA for lupus patients. The drug trial I was in was cancelled last month and so now I am not on it at all. My doctor and I discussed whether or not to get signed up for the IV infusions that have been approved. After much paperwork and other rigamarole, I found out today that my insurance copay will be 20% or up to $3800 maximum out of pocket BEFORE I can start infusions! YIKES!

I don’t know about you all but I do not have $3800 laying around. I was adivsed to get hold of an organization that can possibly help me. I sure hope they can. Benlysta was wonderful for me in the trial, but after time, the small dose I was on did not work as well as in the beginning. To actually get a dose that is decided by my weight and not a set small amount would make me feel good! It worked before, so I have no doubt it can work again with proper amounts.

So, off to beg for help and hopefully I can get started. Here we go on this new adventure. I will update as it continues.

5 thoughts on “Benlysta Adventures or How Much Did You Say?

  1. marilyn

    I am wondering when you took the benlysta did you continue taking methotrexate, assuming you were taking this drug. I am waiting to hear from my doctor if she thinks I am a candidate for benysta. I am presently suffering from lupus pleurisy and I am trying to avoid prednisone. I have found some relief from methocarbamol. I would like to think benlysta will help me with this as well as all my joint pain. Any thoughts?

  2. marilyn

    When you started benlysta did you continue the methotrexate? (assuming you were on that drug) I am waiting for my doctor to decide if I am a candidate for benlysta. Presently I have lupus pleurisy and would like to avoid taking prednisone. It has caused the osteoporosis of my neck. I am finding relief for a short time with methocarbamol, muscle relaxor. I am hoping the benlysta will give me relief. Any thoughts? Marilyn

  3. elfin09

    Hey, glad to hear Benlysta has been working for you, you should try the Benlysta Gateway 1-877-423-6597 or The company set up a program to help anybody who wants to try Benlysta to be able to get it so you should give it a shot! Good luck!

    • Thanks! I am actually working with them now. Hoping to get something going soon!Thanks for the information so others can do the same.

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