Benlysta Was Approved And Hope Was Born – A Lupus Patient’s Perspective

 

March 9, 2011 – I will remember this day, Benlysta was approved and hope was born.

I will never forget the day I was diagnosed with Lupus. That was 18 years ago, and I am now 33. For those of you doing the math, that means I have had Lupus over half my life. Right now Lupus is incurable, so I expect to have Lupus for the rest of my life. I probably will have a hard time even remembering what it is like to not feel sick; I know I have hard a hard time remembering now. Throughout my life living with Lupus I have at one time or another been treated with varying combinations of the only drugs available known to treat lupus. This hopeless cocktail was usually some mix of steroids and chemotherapeutics. This isn’t even counting the medicines I took and still take to counteract all the side effects from the medicines I need to survive.

I remember the day I went to the library to look for a book about lupus. Yes, kids the library… that funny little building where real life paper books are stored. First off, I remember feeling like a freak when no one even knew about lupus. Then, I finally found a book on the subject and there it was, staring at me: “Lupus – an incurable, fatal disease” I remember thinking I am 15 and my life was over.

I remember the day that my family and I reached out to our local Lupus Support Organization. It was then that we bought a new book. In this book “lupus was an incurable, chronic disease”. They were so helpful and gave us all the support and education we needed to better understand the disease. Although we were overwhelmed, we no longer felt alone. The one thing I remember about that day was talking to the Executive Director and having her explain each of the treatment options. When I asked her what she was currently taking, she explained to me that she was taking the same medications she had been twenty something years ago. She also explained that these medications were not even made specifically for lupus, but we, in a sense, borrow them to treat our disease. I was shocked. Of course there were dosage changes, and even some exact pill changes, but the reality was that there had been no change in the way lupus patients were treated in all that time. She could offer me support, she could offer me information, but she didn’t have any real good news… it was the same ol’ news.

I remember the day that I decided to stand up, to get involved and to volunteer. I knew in my soul something more could be done. I heard a little voice in side of me that said every bit counts- and I need to do my share. This day was a few weeks before my first fundraiser event, our local Lupus walk. I even “came out” to my sorority at my college and told them that I had lupus. It was freeing. We rallied together with family and friends, we raised money for research and we walked as a team. I remember raising the money, and feeling confident that the money was going to help local patients and families living with lupus. What I wasn’t so sure about was the money that was going to research. I mean, if doctors and scientists didn’t even know why people get lupus, and if they haven’t found a drug to help us yet, why should I believe that they will. Lupus never gets on television, you don’t hear about lupus in the news, in newspapers, magazines, or anything. In fact, I had to go to multiple doctors to even get a diagnosis. Lupus was the disease that no one knew about, so why would I believe anyone cared enough to do research about it?

But I had a thread of hope. So every year for 15 years my family and I walked for lupus and every year we raised more money then the year before. I had a hope that every year something would get better for lupus patients. This past year- we had our best year yet- and just my team alone rose close to $12,000 If money was going to go to research then I was going to do my part.

In that time, I started this website (ButYouDontLookSick.com) I felt that I had a voice, and I could use it to inform and support others. I was just a girl with a laptop at the time, but I had vision. In time, I started to be recognized for my writing, having been printed in newspapers, magazines, and prestigious websites. When people kept reading, I kept writing. I started traveling as a speaker for different Lupus organizations. I loved it. If people kept listening, I kept talking.

I also joined my local and national board of directors for the Lupus Alliance. I felt I needed to do my part. I have gone to both Albany, NY and to Washington, DC to lobby for more research dollars to be spent on Lupus. Yes, I even brought my little 9 month old baby at the time to Capital Hill to meet our delegates.

I have planned fundraisers, helped with support groups, went to classes, and done anything asked when it came to helping others live better lives with lupus. I never want anyone to feel alone, and I never want anyone with lupus to feel hopeless.

Why am I sharing all these memories with you? Because even though I can never forget all these memories in my past with Lupus, I also will never forget today.

I will never forget waiting all week to hear if the FDA was going to approve this new drug called Benlysta. Everyone in the Lupus community thought this decision might come on Thursday, so I never really expected it today at all. But as soon as the news came, I couldn’t even believe my eyes. I had to check other news sites to even be positive. Within minutes it was as if you could hear the collective roar of excitement across the internet from the Lupus community which has grown into a family through social media. I received so many emails, tweets, posts, phone calls and more that I couldn’t even count. I cried, I screamed as I called my mom and other Lupus friends…. The happiness was so evident it was tangible.

I will never forget the day Benlysta was approved because:

It is a new and hopeful medical option. In my 18 years living with lupus I have now been treated at one time or another with all the available drugs. Even though the drug does not work for all, and might not work for me, it gives me hope. It gives me options.

When on Benlysta, a Lupus patient can potentially lower and even come off of many of their current treatments, some of these treatments include horrible drugs like steroids and chemotherapy. These toxic treatments have long term adverse effects on the body. Although it might be too late for some of the damage my body has undergone, this gives me hope that this is the start of a new era for the treatment of lupus patients. Hopefully patients getting diagnosed and treated now will not only have more options in their lifetime, but fewer side effects too. Hopefully this will be the start of a new generation of lupus patients that will not have to endure the toxic chemical treatment options that I had to.

When the FDA put off their decision in December I was disappointed. Now, I personally feel a sense like “we won!” because it means the FDA heard the outcry of lupus patients voices.

In my opinion this decision helps give lupus a sense of validity. If a huge pharmaceutical company put time and money into developing a drug, and our government and FDA approved it, that means it is real. To this day, I get asked “What is Lupus?” To this day I still have to explain the disease to people in my life, and sometimes that even means doctors or nurses and other medical staff in emergency rooms. I also have been questioned on the validity of the disease. Is it real? Hopefully this will change that outlook.

I used to make a sad joke and say that the only time Lupus was in the media was if someone died, or if Dr. House on the popular television show didn’t know what the patient had. Lupus is never in the news. Lupus never gets the spotlight. Apparently lupus isn’t one of the “popular” diseases. But because the FDA approved Benlysta I could not even keep up with the news stories online tonight. I am bursting with excitement and anticipation to see what kind of coverage might come tomorrow. Whatever it is, it will be more then none.

Will Benlysta work for everyone? I don’t know. Will Benlysta work for me? I hope so and I am willing and excited to find out. Hopefully the research, the scientists, doctors, and even lupus patients don’t stop here. Hopefully this will be the first good news in a new era of hope. This is just the beginning of a new life with Lupus.

I will never forget that Benlysta was approved today, because now I have hope.

Links of interest:

Learn more about Benlysta

Learn more about Lupus

Written by Christine Miserandino.

Christine is the owner of butyoudontlooksick.com. She is the author of “The Spoon Theory” as well has hundreds of other articles. She is proud to have her articles honored with awards and featured in many newspapers, magazines, and television media. She is a patient advocate for Lupus as well as all those living with chronic illness. She is a professional speaker and has toured the country. Her passion is helping people. You can learn more about christine here, you can also find her on twitter @bydls

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Are you a Lupus Patient, or are you a caregiver of a lupus patient? What are your feelings on the approval of Benlysta? Post your thoughts, feelings and reactions below in the comments section to share with all.

©2019butyoudontlooksick.com
  • karen mck

    HI there…My name is Karen. I too am dealing with your exact issuies. I feel for you so much! Im %0 and have been told finally that its Lupus after battleing joint pain and dealing with pain meds for $ years. Anyway I was told that my doctor wanys to start benlysta and Im afraid of the side effects. Would you be kind enough to let me know how your doing with the medication?

  • Sissy

    Hi,i am 59yrs of age and was very active all through my life untill i was diagnosed with lupus in 1999. I’ve been on various medications,but still endures a lot of pain, also arthritis and other problems. My physician has applied at my medical aid to approve Benlysta, please keep me in your prayers? I will keep in touch with you on this page,thank you for this platform to share our experiences with regard to lupus,much appreciated. Sissy. Cape Town, South Africa. 

  • Kelsie

    I had my 4th benlysta treatment last Thursday. I noticed a change almost immediately! (Which is apparently not typical). Im not taking naps every day. I dont wake up with pain everyday. I still have some pain and stiffness, but its less. I actually have energy. A few days after my second infusion, I had energy to clean out the refrigerator. Like wipe down the walls, wash the drawers, the whole 9 yards. This hadn’t been done while I had been living in my house over a year. Im doing things I enjoy again. I can be a better mom because of Benlysta!

  • Someone

    This is such a touching story, your life will be an inspiration to all!

  • Msgaddy

    Can anyone that has been on Benlysta share how they are doing?  I have had Lupus for 10 years and as many of you, have been on MANY medications but I am still out of control.  I am going to start it in about 10 days and I am very hopeful!  Have you seen a difference in your pain?  In your fatigue?  Have you had any side effects?  Any information with your experience(s) would be greatly appreciate!

  • Msgaddy

    Hello Lori.  I was just wondering if you or anyone else that has been on Benlysta can share how you are doing.  Is it helping with the pain and fatigue?  Are you suffering from any side effects?  I am scheduled to start it in about 7 days and was trying to find any reviews from someone that has been on it.  Thanks!

  • Sophiajoles

    I am due to start benlysta in a week, I am 37 and experiencing my 4th flare since 1994 diagnosis. I am in no way as bad (vasculitus, stroke and partial renal failure) as previous bouts (some swollen joints and fatigue at this point) my lupus was dormant for about 5 years, I hoped that was the last of it 🙁 I believe my doctor and I would like to nip it in the bud! Kindly tell me how you are feeling? If you are on any meds currently? Do you feel your lupus is dormant?

  • mary

    lori please let me know how you do i to haue diabetes and kidney problems and the doctor says they cant treat me because of that.Im in so much pain.

  • Lori Wasson

    Hi Christina,
    I read your story and was so impressed with you. I diagnosed with Lupus in 2005. And it has been a battle. I didn’t know the affects lupus could have on your body. I have found out that lupus had affected my spine and I have major pain in my back and joints. Just like yourself I have to explain what lupus is and what it does to a person. On top of that I am a diabetic type 1. I was diagnosed with diabetes at the age of 12, I am now 46. I was so happy to hear about benlysta because the medication I am taking does not seem to be helping I am swollen all the time and in pain. At this time I have started benlysta. I am about to start my second treatment. I am praying that this works for me because no one can imagine the pain that we (lupus patients) endure. This is something that I wouldn’t wish on my worst enemy. I hope this medication will work for myself and others who suffer from this disease. I hope this will give me back some of my life and I can start doing the things that I did before I got lupus. MY prayers are with you and all who suffer from lupus. May we all be blesses.

  • Hi Christine,
    I was doing more research on benlysta and came across your site today! We have the same EXACT story it is unreal! I was diagnosed with Lupus nephritis when I was 15 years old, now 29. I have been on every drug (chemo, steroids, etc). For the past 2-3 years, I had the lupus under control and finished my first 1/2 iron man and things were going great. This year I had some major life changes: adopted a baby boy:) and my mother-in-law moved in:(. From the lifestyle change/stress, my lupus flared up. I am currently waiting for approval from my insurance to start on Benlysta infusions. I really hope it works. Have you started Benlysta infusions yet?

    I am also a dietitian and do weight loss/management counseling for patients with autoimmune disease, specifically lupus.
    Thanks for your time and THANK YOU for sharing your story!!!
    Laura

  • Shirley

    I’ve had Systemic Lupus for 19 yrs affecting my kidneys initially with Lupus nephritis, then my CNS with transverse myelitis,
    hemolytic anemia etc I’ve been on all the approved drugs for lupus, high IV doses of Prednisone, Cytoxan, Imuran, Methotrexate, IVIG
    I’m suppose to start Benlysta today. It’s exciting to think I maybe able to get off the drugs I’m on now especially Prednisone. I gained 100 lbs & Cellcept toxic. At least there’s HOPE. I don’t know how long Medicare & my supplement will pay for it but I’m going to
    try it & see if it works.

  • david

    for those wondering about prices, it’s 35k per patient per year. My wife has had lupus for over 40 years and while this is a big step in the right direction, i don’t know how we or anyone else can afford this stuff.

  • phil cathoir

    I’m pretty late on posting to this site but I only recently found out it existed. I don’t have lupus but am in love with a girl that has had lupus for years. I have only known her for about 6 months but she is amazing. I have been following the drug for a while, basically since she told me she has lupus. I hope that this drug does help people and even if it doesn’t help her. I want to spend the rest of my life with her and like to think I know what I’m in for although I probably don’t. She’s amazing and I am glad that there is always hope now even more than ever. I have actually had arthritis for my entire life. I suffered a pretty severe childhood case and was told early on I wouldn’t see 18 standing up. That was hard to take but a strong support system was great and makes all the difference. I actually am glad to say the doctors were wrong and I am turning 27 soon and am nowhere near a wheelchair. I am currently on a drug for it called enbrel it was originally for something totally different but works wonders. My family calls it a miracle I’m just glad I finally started taking drugs again for many years I just refused because nothing helped my case and the side effects were way worse than the disease. Now I know my case is not lupus but I do understand hope. It is an amazing thing especially to someone who had given it up for so long. The thing I remember most though and the thing I hope you, my girl, and many others get to experience. I remember waking up one day thinking something was wrong. I felt something was wrong or off it took me a good portion of the day to realize what it was. I woke up that day without pain. Having only suffered what I now know was pretty severe pain my entire life suddenly not having it was amazing. I hope you all one day get that same experience because there is no way to explain it in words. But that moment of realization is life changing. I wish it for everyone. Best wishes.

  • Julianna Primo

    Its me Julianna employee at PS 203 where Christine’s Mom works home sick AGAIN with my Lupus….fever pain in my kidney and all over my body. I was increased to 3000 of Cellcept on Saturday and Im not sure if that caused me all this grief or I picked something up AGAIN from the outside…I forgot to wear my bubble…..cant take missing work……
    Just wanted to say that right now Benlysta is 35,000 a year cost for treatment according to my doctor who was part of that and many other teams/studies….no insurance company has picked it up yet but when one does I hope that all of us will be on it and better than now.
    hope to be better and fever/pain free
    Julianna

  • Christine, I had to come back and read this story again, You give people so much hope in everything you do your an amazing woman.

  • love you mom. “Hey worth’s a shot! right?” 🙂

  • Kelly

    This sounds like good news. I will definitely research this. I had to get off Plaquenil because my hands and feet broke out in a rash and my skin peeled off. I have tried SO many drugs that I was either allergic to or didn’t work. Thank you for sharing!

  • Dottie Balin

    Christine, this is wonderful news !!!! This is what everyone has been waiting for. There is hope on the horizon. Our prayers have been answered. Terrific article, which I can relate to. I did the same thing to learn more about what I was diagnosed with “Lupus” in the library which was in 1999. This is truly a Red Letter Day !!!! Thank you for sharing and all the hard work you do for all of us “SPOONIES” 🙂

  • Mom

    Chris I am soo excited too. As your Mom, I remember asking you to try ANYTHING- vitamins, massage, healthy diet, masses for the sick, physical therapy- ANYTHING. I just wanted to have something to hope for- Now I have hope again that you will lead a healthier life. I love youXOXOXO

  • Cyndee

    I am beyone excited. I was one of those people that when they got diagnosed thought I was going to die.

    I still have moments where I am very aware of my mortality. Every birthday I celebrate ( I am 42). I feel that by doing so, I am saying Lupus I win another one–bite me. LOL

    Having another treatment out there is just awesome!I am one of those people that has been on various cocktails trying to get mine under control.

    I AM BEYOND EXCITED AT THE POSSIBILTY THAT I HAVE ONE MORE OPTION!

  • Kate

    Your story brought tears to my eyes… Although I do not have Lupus, my best girlfriend of 35 years passed on from Lupus a few years ago. I am HAPPY that they have finally approved this medication for ALL of YOU, and I KNOW that my gf is smiling down from heaven!!! 🙂 And being the spiritual person that she was, I have no doubt that she is having a talk with God, begging him to help ALL of you, and to make this medicine work for you. And to those who struggle with paying for their meds, to make it affordable for you as well.. 🙂 She, my friend, was just that kind of person…God Bless her…
    I have fibro, so I can relate in some ways, and having been through my gf’s lupus with her, I can relate in that way!
    My blessings to all of you… And I agree with “Steph” who posted here just before me, YES, “Some dreams do come true!!!!” I hope that you will also see the rainbows soon, as God knows you certainly have walked through enough rain!!!! XOXOXOX

  • Josi Halfred

    This is great news!!! But now the question is… will this medication be affordable???

  • Steph

    Christine, I remember sitting in the middle of the bed with you in a house in Atlanta talking about how our lives would change if the FDA approved Benlysta. It seemed like a dream.

    Some dreams come true.

    Onward and upward.

  • Jen Martin

    Amen!!!!!!!!!!!!!!!! I hope this truly helps!!! xoxo

  • Mandy

    I hope, I hope that this Benlysta helps many of us.
    I also hope my rheumy consultant will get his head round the idea that theres more options than his training told and the aged, pompus git will consider using it!

    Indeed, is it available in the UK?

    Awesome news though!

  • Christine, hope this helps those who suffer. I try to teach my daughter that even one single step can make a difference as we are getting ready to do our walk in Albany for Lupus. I have prayed for this and your website really made a difference while I was going through the rollercoaster ride of the dx period and after learning to deal with all of this. It is a safehaven for me. I can only hope that this will make the journey for others easier.

  • Stacey Houston

    I have been in the study for 6 years for Benlysta and I am so glad it has been approved! It will help so many people like it has helped me! This is awesome news!

  • Christine,
    I am so excited! This is huge for all autoimmune diseases. I have hope that our once thought unsolvable puzzle of autommune diseases has a chance. It’s no miracle, it’s the result of education, research and hard work. As you said it may not work for all, but this breakthrough may lead to more and that gives me great hope. Thank you for all you do:-)
    Karen

  • Liliana *Lilykat* Guillen

    I’ve been a Lupus patient for the last 11 years now. Like you Christine, I went to the library in search of more information after I was diagnosed and found very little current information. What I did find was outdated and depressing. Eleven years later and I’m still alive! And still fighting Lupus every day. Some days it gets the better of me. Some times I end up hospitalized. I’ve had what feels like every treatment/medication known to man in order to find some kind of magic recipe that would put the Lupus to ‘sleep.’ I never thought that in my lifetime we’d have such a huge development in the treatment of Lupus. I wished for it like everyone else affected by Lupus, but when you look at the time line and see more than 50 years have passed since the last time a medicine was approved to treat Lupus- you just don’t see it happening. THANK GOD I was wrong!! Benlysta’s approval is a huge, huge step forward for those of us with Lupus. As you stated, now there really is HOPE. I too raise funds in Lupus walks for research and wondered if it even mattered… now I KNOW it did. Every little dollar we all raise and donate to the people searching for medications to treat Lupus and even better, a CURE, really do make a difference. Benlysta will change lives. I’m sure of that. It may not be for all of us Spoonies because we all know that Lupus affects us each in a different way and no two Lupus patients are exactly alike, so probably the treatments used don’t affect us all in the same way either. Even so, so many people will find relief now!! This is so exciting to be here now because we will get to see it! This makes me believe that more and more medications and treatments will be discovered for all of us and maybe, just maybe… a CURE really is possible. There really is HOPE now.

  • Rebecca

    Christine – I only hope this is the miracle you, and many others, have been waiting so patiently for. Fingers crossed! 🙂

  • Sandy

    Excited! Excited! Excited!!!!!

  • Miranda Rice

    Oh, I so hope it works for you and other Lupus Spoonies! My very best wishes for good health for all!