Lupus

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Hi everyone. Does anyone know anything about benlysta? I'd like to know if anyone has taken it before, thank you

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  • Posted

    Sorry not heard of it, is it a new drug ?
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    • Posted

      I'm really not sure, I guess it's a once a month and it's through an IV, my doctor wanted to see if I wanted to try it, I'm not sure if I do. I just wanted to see if anyone knew anything about it
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  • Posted

    Benlysta has been around for quite a long time; here in the US, it is the only drug approved for lupus. However, I am in a clinical trial for a drug that is supposed to be even better than Benlysta. It's called, Epratuzumab, and I recieve 600 mils vial IV for four weeks, then I'm off it for eight weeks, and continue the cycle. I've only had three cycles of the infusions and while my bloodwork shows improvement, my body doesn't really feel it much. I still have hideous skin and excrutiating pain.

    I see other patients at my infusion center who are on Benlysta, and they seem to be doing very well. Are you on it now? 

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    • Posted

      hello - are you certain that you're receiving the drug and not placebo (or are you in the extenstion trial where all receieve the drug)?

      I've seen pretty good results from a handful of patients receiving the drug.

      Good luck

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    • Posted

       Hello Phil57837,

       I know that I am getting the drug. Initially, I was in a blind aspects of the study, and then I was changed to the aspect in which we are certain that I am getting the drug.  I just came through another cycle of infusions, and my blood work has improved even more so, and I am in a much better place than I was when I first responded to this thread.  However, when it comes to lupus, the damage has been done.  The pain that my body is still in is from joint, tissue, muscle, and organ damage that might not heal. However, I know that I will be living a better life by continuing this treatment.

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  • Posted

    hi missy1975, if you go to the american lupus support site and put Benlysta it gives all the data you need. i read it last year through their email, im not sure if the u.k perscribes it yet but i believe its the newest drug for 25yrs for lupus and shows good results. check it out and let us know if it was any help.
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