FDA Approves Benlysta®: What does this day mean to you?
Read stories from other people who living with lupus, and what this advance in lupus treatment means to them. If you would to share your experience, please submit your story now.
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The FDA's approval of Benlysta is very exciting to those of who suffer from lupus! I was diagnosed with lupus eleven years ago and have tried several of the old "standard treatments", most, if not all, of which were not specifically designed to treat lupus. Many of these treatments come with possible side effects that are almost as bad as the disease itself - it is like a double-edged sword. This new drug gives me hope for the relief that I have been searching for all these years. It also gives me hope for more new treatments to come, as well as hope for what we all are waiting for - a cure for this devastating, life-altering chronic disease.
I am the father of a 23 years old girl, who was a third year medical student at Jimma Univesity of Ethiopia, when she was diagnosed 3 years ago as a Lupus/SLE patient. She was treated here and in Thailand but the overall health condition of her not so much improved. Just on and off process. The fatigue, joint & muscele pain and poor eating habit makes her so weak that walking has become almost impossible.
I have been following the development of the drug through LFA and when I read today the approval of the drug; I almost cried alone in my office. I immediately visualized my poor girl healed, walking freely and smiling and doing anything she likes to do.
I congratulate all who participated in the development of the drug and most of all LFA for your dedication and effort making it real. GOD BLESS YOU ALL!!!
I try to hard to live a "normal" life as a very busy Mom of two elementary school aged boys and a part-time preschool teacher. Yet, I constantly find myself having to cover up and minimize my symptoms that seemingly pop-up out of no where as soon as the weather becomes chilled and my bones change from a mobile 30 year old to a 90 year old's stiff heavy, and ridged body, overnight. I fight headaches, anxiety, hair-loss, and body sores, especially when my monthly cycle steps in to add company to the miser. And I battle with the internal turmoil of hoping that I can just move out of this flare, or that flare, with minimal help from any bitter white pills, or the looming threat of the dreaded "S" word that promises to make me as jumpy as black cat on a hot tin roof!!
I am not counting on a miracle from this new drug, but would be encouraged to know that we are moving closer to that "normal" life, that many of us so deepily long for. When we don't have to hide our symptoms in fear of being judged or labeled or even pitied.This is my prayer for this new treatment.
This new drug means the world to me. I have been taking Prednisone and Plaquenil for some time now, but they only work minimally for me. With this new drug, it can offer another alternative that just may help me deal with this disease in a better way. I am so happy!!
This day means a great lot to me. I found out I had lupus right after my 30th birthday, tried for 4 years to have a child, then after finally having my daughter Mia, 6 months after I began having the worst attacks in my life. The kidneys were almost going down the drain, my heart had a water sac, my lung left side had collapsed. I have had moon face, hair loss, Chemo for months, cataracs now in my eyes from the plaquenil, Cortisone shots in both knees and now I am going for right shoulder surgery next Tuesday due to the long use of steroids. Not to mention last June getting attack with Discoid form which messed my whole face up. So this is really needed and thank god for the great news and I pray it work not only for me but for everyone who is in this battle. God bless you all.
At last, something to give us hope. I have been fighting this battle since I was 32. I am now 56 and have run the gambit of drugs throughout this time. I struggle with pain 99% of the time and have lots of side effects of the meds. A simple cold can send me to the E.R. where I'm usually admitted. Worst thing of all is that I can't attend church if it's flu season so I hibernate inside for several months a year. My grandchildren don't even remember me "not sick", which makes me very sad. I have no insurance at this time so I am hoping there is a way for me to try this...and that it doesn't have horrible side effects. Thank you God!