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.
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Today is the beginning of a new life for me, one where the uncertainties of lupus will be shackled, as lupus has shackled me and my family.
I'm overwhelmingly grateful to everyone associated with the development of BENLYSTA. Tonight I will sleep in peace in the knowledge that my fellow man has worked so hard on behalf of all the lupus suffers around the world.
I am a 40 year old, african american female, and mother of two spirited boys, 4yo and 18 months. I was diagnosed with SLE Lupus in 2009 while pregnant with my second son. I also have a diagnosis of Fibromyalgia and IBS. For more than 20 years I complained to medical doctors about my symptoms,but I felt that they either minimized or dismissed my symptoms. When I received the diagnosis in 2009 I was devastated, but felt simultaneously relieved. I am not crazy afterall, I thought. I felt validated. Unfortunately, due to the lack of understanding of the disease I have also struggled with feelings of bewilderment, as did the medical doctors. There were no clear answers, solutions, no direction, and very little guidance. I felt like I was lost and alone in darkness. The doctors, mired in their own confusion about the disease and feelings of powerlessness, subsequently caused me to feel insignificant and powerless. I give thanks for this new medication, Benlysta -- a drug specifically developed to treat lupus. It empowers me. It gives me hope. It makes me feel important, that I matter -- that lupus, and those living with it, matters! It validates me and all those suffering from this chronic, disabling, disease. On behalf of my sons, I Thank You! On behalf of the millions of people living with lupus, I Thank You!
This day means that there is a light that finally is shining through the darkness. No one can see our pain, and they certainly can't feel it. We suffer in silence with a feeling of isolation and desperation. The approval of Benlysta is, in a word, hope. It embodies hope where there just was none. With increased awareness and continued strides forward, our voices will continue to be heard and lupus survivors can have something they have been denied....their lives.
I've done it all before and since my lupus diagnosis this summer from losing organs to trying the IV drugs to now being a moon-faced, high steroid user. The news that we finally have a new drug gives me hope, and hope is exactly what I needed. Well, that and more safe, effective, and FDA approved drugs.
Erin Kotecki Vest
I am 50 years old and have been battling this baffling disease for nearly 18 years now. I realized how serious auto-immune disease was when my thyroid glad was destroyed (Hashimoto's) and I underwent radiation treatment. Last year my rheumatologist started me on Plaquenil, abnormal blood tests and active symptoms of Sjogrens. It seemed my world and body were falling apart. I was relieved that Plaquenil would not cause the weight gain of steriods but had to take into consideration that it could...cause vision problems if taken for a prolonged amount of time. I am an artist (paint, photography) and also play piano and harp. The thought of losing my eyesight is heartbreaking ... but I had to be realistic as I knew lupus could cause serious organ damage which can be life threatening. I pray that Benlysta will be made available to me, if so recommended by my doctor, in hopes that the long term effects will not be as risky as the anti-malaria drug. I hope the cost will be reasonable and that middle class americans, like myself, will be able to afford it. How can you ever put a dollar amount on your eyesight...or health. I plan on being around for a long time to see and smell a beautiful rose or smile on the face of the adorable children who make my life so sweet. Thank you for taking this disease so seriously... and for making the future full of HOPE.
I was diagnosed with lupus 6 years ago. I have the (often supperating) facial lesion and have had several organs removed or partially removed due to organ death. I suffer from sudden massive infections that frequently require hospitalization, and am susceptible to every infection - cold, 'flu, sinus, ear, kidney, and bladder as well as colon infections, etc.; I get strep throat usually twice a year. I also suffer from severe arthritis during flares, that can last 2-6 weeks at a time. I refused to take the steroid treatments, because my medical training taught me that steroids are not worth the risk of bone loss, especially to women entering menopause. I depend on Cipro and other antibiotics as well as common anti-inflammatories to reduce the impact of the flares, and have switched to an all-natural diet, just to survive; even moving 1700 miles to ascertain pure drinking water and proximity to naturally-grown foods.
I truly hope this medication is the godsend people think that it is. I would love to be able to approximate a semi-normal life. However, I have no insurance so I probably will not be able to get this medication, at least for awhile. I do have a wonderful GP who responds quickly to my needs, however, and even educated herself on lupus (I am her only lupus patient) so I am lucky in that.