I participated in the Benlysta injections trial as well, and it worked extremely well. I finished it (including the 6 mos. add-on when I definitely got the drug) in November 2013, and then went to infusion, but I'm hoping the shots are approved before long. Benlysta has really stabilized my health!

I give myself shots once a week. For about the last year and half. I haven't really had any side effects except I have felt better .. More energy. I was on Embrel for 5 years so doing the shots in the stomach or legs was easy for me and I did those twice a week. I've had some vasculitus and other stuff which I have treated w prednisone but I think the Benlysta has helped my joints and overall health.

I guess drugs are determined by the type of lupus and its severity. I had it full-blown in the beginning, with a plethora of problems. My rheuma doctor started me on 40mg Prednisone, and 6000mg Cell Cept. I now take 1.25mg Prednisone, 4000mg Cell Cept, and 75mg L-Thyroxine, as I have Hashimoto's thyroiditis -- the worst of the types you can have. It balloons up the thighs and hips, and I absolutely hate it.

I had the opportunity to try a new drug as part of a study, but since I'd been on these the entire time, (going on 4 years), I'd be undoing all of my progress by taking a "maybe it works" experimental medication, and my rheumatologist wasn't really in favor of my participation, although he told me it's my choice -- he didn't recommend it, so I listened to him.

I'm often tired, but walking and adequate sleep help. I suggest you stick with the medication you're already on, especially if it works, and wait before switching to the newer ones -- leave it in your professional's hands. Of course, you can do what you want, but if you're already progressing, do you really want to risk having to start all over again? I wouldn't.

I agree with you Mary, my study ends in May and it looks promising regaeding approval. I will also go on infusion in May but this has really been an awesome drug for me as well, I would advise anyone who was given the opportunity to try it to do so!

Yes I have been on the Benlysta drug trial for
About a year and half now. They are trying to introduce it in injection form instead of IV so I have been giving myself injections. Let me know if you have any questions. Sarah