My Benlysta Story

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He everyone! As many of you know, I have been in a drug trial for benlysta for a couple of years now. Our study is ongoing. I am injecting a small amount into my stomach once every two weeks. Others in the same trial are injecting three times a week. This trial is to see the effectiveness of b

enlysta in a subcutaneous injection versus the approved method of IV infusions.

At the beginning of the trial, I responded well to the treatment. However, as it progressed, I began to flare again and be subjected to doses of prednisone to help counteract the flares. I asked if the drug trial people would allow me to go to the higher dose and it could show how well it works. After my doctor asked, the answer was no.

In the meantime, benlysta was approved for IV infusions. To go off the trial and into the infusions meant checking to see if insurance would pay for it. Sadly, my insurance does not cover the infusions. My doctor is now trying to get me an exception so I can begin the dosage that I need to help me out of this flare.

So far, no word, but if I find out something, I will post it here.

Are any of you out there on drug trials for new lupus meds? Share your story here! I figured that if this drug got approved (which it did) then I have helped others who are not yet diagnosed, which may include members of my family since we seem to have a genetic link. I cannot get out and march or walk much anymore but by participating in the trial, I feel like I am helping others. Well, thats it for now!

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3 thoughts on “My Benlysta Story

  1. I was a Rituxan clinical trial patient, had an amazing 5 year remission, and then my insurance company would not pay for more when I started flaring again. Now, after most of a year of appeals, we gave up. I am scheduled to start benlysta infusions in a couple of weeks. My insurance company will pay for this since it was FDA approved, they said yes.

    • I am on the trial still, but need to get the infusions so I can get higher dosages and hopefully get out of this flare! My insuranc said they will not pay for it, it is like 30k a year! So, I guess I just have to try the exception or take more of the same old that has not worked yet…

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