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Mark
12-23-2012, 11:26 AM
My wife of 26 years was diagnosed with lupus about 6 years ago. The doc had her on all sorts of meds, and did chemo on an outpatient basis about 3 times a year. A year ago, he stated he wanted to try a new drug with her, called Benlysta. Was supposed to be less evasive and more directed at the lupus. She took that procedure on a Friday in Oct. 2011, and died at home the following Tuesday at home. She hadnt been feeling great, but she was not on her death bed. Anyone else heard any stories of Benlysta?
Thanks

tgal
12-23-2012, 12:40 PM
My wife of 26 years was diagnosed with lupus about 6 years ago. The doc had her on all sorts of meds, and did chemo on an outpatient basis about 3 times a year. A year ago, he stated he wanted to try a new drug with her, called Benlysta. Was supposed to be less evasive and more directed at the lupus. She took that procedure on a Friday in Oct. 2011, and died at home the following Tuesday at home. She hadnt been feeling great, but she was not on her death bed. Anyone else heard any stories of Benlysta?
Thanks

I am so very sorry for your loss. I know several members have tried Benlysta with differing results. My heart breaks that your wife had the outcome that she did. I haven't heard of anyone else having died from the med but I know that doesn't make it easier for you

Mark
12-24-2012, 12:34 PM
Thank you very much, and a very Merry Christmas to you.

Saysusie
12-24-2012, 11:17 PM
i am so very sorry to hear of your loss. i do not know much about the drug, but there are several members here who have used it or are currently using it as tgal mentioned each patient has his or her own varying results from the drug i hope that someone will be able to give you some answers i wish you the very best

steve.b
12-25-2012, 02:45 AM
mark, may i give you a cyber hug.


i think i can understand the frustration...
may you find answers.

please feel free to keep comming here.

as was said, we have about 3 or 4 members on benlysta.
but i have not heard of anyone else dying from this medication.

jmail
12-26-2012, 05:05 PM
Hi Mark. Very sorry about your loss. You're in our thoughts and prayers. I'm not at all familiar with benlysta, so cannot comment about it.

SleepyInSeattle
12-27-2012, 10:32 AM
I also don't know about the drug, but wanted to offer my condolences and some cyber-support from a stranger....what a terrible loss. I hope you are able to find answers and peace, and as somebody who might be offered that drug at some point, I appreciate you pursuing those answers. The information may help somebody someday, though I am so, so sorry it came from such a horrible tragedy.