Hi, have any of you tried Benlysta? I live in the US, and it's my understanding that it was FDA approved over here first. Now they are using it in Europe and Canada as well. Anyways after the last year of having my lupus drastically progress to the point I had to quit work and have lost most of my ability to do even the smallest of tasks, I was sent to a new rheumatologist. Upon going to my first appointment I was so relieved to find a rheumi who really wanted to help me, said there is hope, and said that my lupus should never had got this far out of hand.
The new office seems to be extremely knowledgable and on top of things, they also have experience with this fairly new treatment. He said that he thinks Benlysta is the best option for me as it is specifically for treatment of lupus where as most other treatments are borrowed from treatment of other diseases. It also works to stop the lymphocytes specifically responsible for causing damage from lupus rather than suppressing your entire immune response, such as other immune suppressants do.
Anyways I've got approval from insurance and am set up to start my first infusion next week. Then it's every 2 weeks for the first month and then once a month from then on. I've done research on it and for some they say it's like a miracle drug, putting them in remission when they have never been in remission and others having no results or bad reactios to it.
I'm so hoping this will be the answer for me as for the past year I've been in a constant flare state with hardly any relief. Hoping I can get some aspects of my life back. Just feeling excited, hopeful, but also a bit nervous as to how my body will respond side effects wise. Some people report feeling terrible for a week after each infusion and then good the rest of the month and a few say they had no side effects. So I guess I was just curious if anyone has experience with it or how common it is of a treatment outside the U.S. as it was just approved in 2011 it's still pretty new here, a lot of doctor offices haven't heard of it and this new rheumi has been the first one to tell me about it.