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!