Wednesday, November 2, 2011


It is 9 am November1, 2011. I am at the Brigham  and Women’s Hospital in Boston. I am getting my monthly Benlysta infusion. Benlysta is the first lupus drug approved in over 50 years. I am one of the fortunate patients that is getting it.  I am grateful for this drug because of how much it has given back to me. I had noticed the positive effects of it almost from the start.
The first infusion I had was a few days after July 4th…Independence Day…it seemed so appropriate. To me this drug was a promise of a new and freeing life.
It has been a little over five years since I have been bitten by the wolf. In that time I have experienced a lot of trials and tribulations.  After the first 3 weeks of being inflicted, I was certain I was going to have a short life, today with the help of this new drug, I feel I have a chance.
Lupus affects everyone so differently. It is a mystery that even the top researchers and doctors can’t seem to figure out.  I am reminded of the day on an online support group when a mother wrote into say her 9yr old son was in intensive care. He was just diagnosed and she knew nothing about this disease. Typing from her lap top in his hospital room, she was desperate and wanted to talk to someone…anyone who had been through this. She wanted to be reassured that he was going to be ok. We all responded with positive thoughts and prayers and the encouragement from some that they had had it for 20+ years and have it under control.  We checked in on the thread daily. We asked how he was…after a week we received a response…her son was dead. It humbled us all. For those that were old timers…it wasn’t a surprise. For us new timers it was a wake up call to never take anything for granted again. We can joke about the wolf openly…yet we all know he commands respect.
 Five years later, what this new drug has done for me is to fight back in a battle that has had out dated ammunition and arms. It has surprised and stopped the wolf in his tracks almost from the first infusion.  Five years ago I had a walker…on good days a cane. I was bruised from head to toe and my feet and hands were twice their normal size. Traditional treatments of steroids, Plaquenil and Methotrexate got me under control. The swelling went down the bruising stopped and I could walk…although with a limp. Some may have been satisfied with that and lived their life accordingly. Not me. I wanted more. But more importantly than wanting more for me, I wanted more for all lupus patients. For those who were worse off than I ever was. That is why when I found out about this new drug, I wanted to be a part of it. Benlysta is not for everyone. It doesn’t have the same results for severe Lupus. Believe it or not despite my condition I was still considered a mild case.  I on the other hand was the perfect candidate for this treatment and after reading the findings knew it. I not only had SLE (systemic lupus erythematosus) but also DLE (discoid lupus erythematosus) I approached my doctor and he confirmed my candidacy.  I was one of two patients he had that fit the criteria and the other one was looking more and more like he wasn’t. In my mind I was the only one to make the stand…to fight for the need. I asked my doctor, “If no one took this drug what would happen to the funding?” He said, “The funding would slow down drastically.” I didn’t need any time to think about it. I immediately said, “Ok, sign me up! Even if it does nothing, it is a way for them to see that.”
Five months later here is what I have experienced. First of all I no longer have joint pain. This is something I have had since the age of eight when I was diagnosed with Juvenile Arthritis.  Getting up in the mornings had always been a struggle for me since childhood. My hips and knees would often make cracking noises as if I were slamming two china plates together. Many mornings I would lose my footing and fall on the floor or crash into something in the room. Along with this lack of joint pain I now no longer limp. Can you imagine after all these years being able to have good and graceful posture?  I used to be very athletic when I was younger I rode my bike a lot; sometimes sixty miles a day. This was to combat the possibility of damaged joints by building the surrounding muscles. When the wolf bit me; that had to go.  Today because of Benlysta, I can ride my bike again.
When the wolf hit I found driving to be a challenge.  My perceptions were off. I hit telephone poles while backing up. I would also get confused as to where I was, even in the town I grew up. My strength to shift the car was so weak that I often ground the gears.  My family sat me down and decided that for everyone’s safety, not just mine, it was best I stop driving. In my heart I knew they were right, so I did.
Today thanks to Benlysta I am driving again. My brain fog is gone. My reaction time is back .and I have not misjudged where the car is when parking. And I might add I am driving a fifteen passenger van!
The last thing that is very noticeable about the benefits of Benlysta is my rashes. I also suffer from discoid and have approximately five different identified rashes on my body. My nickname among my Lupus friends was always Debra Itchy Highberger, because I was plagued with it the worst. Well I am here to say the rashes have reduced by 40%. The ones on my arms and chest that were always so torturous and inflamed are now just a quiet remnant. The malar rash on my face is almost gone…some days it isn’t even there at all. The discoid seems less active although so far the scars are still noticeable. My hair seems to be growing back as well, and for the first time in my life I am seeing hair on my legs.
All of this tells me that the quality of my life has improved greatly.  I am much more active and seem to be slightly less sun sensitive. I can work more hours and no longer need a nap every day. I am now back as a member of society.  I know this drug is not for everyone, but for me, it has been a life saver. It is an expensive drug. The average cost when I last checked was just under $40,000 per year. I have insurance, thank goodness, that pays for it. I worry about those who don’t.

But more than that, I am concerned about my friends in the UK that are not able to have the opportunity to even try this drug. According to the NICE (National Institute for Health and Clinical Excellence) the cost effectiveness of this drug does not make it worth it. In other words many in the UK feel this means “a lupus patient will eventually die of this disease so why prolong the inevitable at such an expense.” As a person who has been without health care in the past with meds alone costing well over $2000 per month, and other incidentals such as tests and doctor visits costing roughly  $3000 per month; I am all for universal health care. Just because you can’t afford it, doesn’t mean they can choose that you are the one that will die. But as a person with a chronic illness, what I am witnessing globally about such care scares me. Until universal health care understands it is the doctors that should govern a patient’s care and not the job of big business, I am afraid it will be harmful for the chronically ill.  We all need to act on this and bring awareness to this fact.

There is, however, something we can all do right now. We need to stand up in this world and be counted together. I first agreed to take this drug because of the possible benefits it will have to furthering research, so that someday they will find a cure for the five million sufferers’ world wide. We need the rest of the world to come on board as well. Please do your part and sign the petition to help others like me.  (wall street journal article)


  1. Thank you for sharing your experience. I was diagnosed less than a year ago when I was hit with a severe flare (I didn't even know what flares were). I am 37, mother of an 8 year old son and a wife and used to be very active. Last weekend I resolved to getting a wheelchair so that I can get out of the house. It is painful just to walk around but going anywhere to walk is all but impossible.

    After reading your story I have a renewed hope that we can get things under control and I can have my life back. I've done prednisone and methotrexate and I gained 100 lbs in 6 months, thankfully 30 of it was fluid and fell off. I am on leflunomide now and don't feel confident this is going to get me to where I would like to be. I still have hope but while I've been waiting for things to get better I've been in the house which is tough for someone that used to be very social. I am working now to see if I can afford to receive Benlysta, I am trying to remain positive. I know everyone reacts differently but I hope that I can follow in your footsteps.

  2. Dear Debra, how absolutely wonderful that you made this possible for yourself, that you had the courage and clarity to see the significance of monoclonal antibody therapy - I am writing from the UK, one of those who would have been "left to die eventually" as you so perfectly describe - and I am on Rituximab, which was the forerunner to Belimumab. Unfortunately the trias of Ritux were not very cleverly planned, so it failed its final phase and is therefore unlicensed for Lupus. I have had the battle of my life to continue to be on this drug. And it is splendid! Have no idea what the future holds me for me, medically speaking, since I am on the NHS, but having just been published in the local newspaper and being often on the radio, I am doing my part to make this condition and all her accompanying devils, as prominent and visible as possible :) Lots of love to you, and a huge cheer for Benlysta xxx

  3. I just started Benlysta. I wanted to share something that has made me feel soooo much better. After getting nowhere with all of the traditional docs, I went to an MD who does regenerative medicine. She ordered a test to check for food intolerances. The test specifically checks your igG response to certain foods. According to web md:
    IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections.
    So... I got my test results back 3 weeks ago. I'm highly intolerant to dairy, yeast, and eggs. I quit eating these the day I got my results. By that night, my nausea was gone. By the next day I had less joint pain and by the third day, the joint pain was gone and my fatigue improved dramatically. I was so amazed at the difference that I told my friend with Lupus. She did the same test and found out she can't tolerate wheat and a few other things. She quick eating those and had the same results I did except she also had improvement in her skin and her ankle swelling went down.
    I'm just trying to let everyone know that it might help. My new doc said that 70-80% of your immune function is in your digestive tract. So if you're eating things that cause you to have an autoimmune response, you're basically making yourself sicker.
    Oh, I forgot to mention that my shortness of breath is also way better too.
    Traditional MDs may not give much credence to this test, but to be honest, I've spent over 20 years only medicating myself and getting sicker and sicker. This actually works.
    My doc said that this lab does the most effective type of testing. Here is the link:
    There are some labs that will run this test for you without a doctor's order, but most won't.
    I hope this helps you feel better. I feel so much better I feel like shouting it from the rooftops! Take care. :)

  4. I feel so blessed to be able to be getting Benlysta infusions which have brought healing into my life. After years of decline and intense pain, parallel with degenerative disc disease, despite trying every avenue I could find to help improve my general health or individual issues, I was not sure I could go on...but in truth I had to.

    After seeing every kind of Specialist, numerous rheumatologists, I know I had Lupus for over 30 years before finally being diagnosed. Much of my system has been effected, and my joints enlarged and less functional. Walking has become difficult and I have canes and a walker I have had to use.

    When I Learned I was going to receive Benlysta , my hope was greatly restored. I also began prepareing for my first visit treatment by making sure I was avoiding any food or environmental triggers That i was aware of, and by drinking plenty of good water, and taking advised supplements. Then I took on a motto of prayer, hope, and belief. I arrived at the infusion center well hydrated and mentally prepared in believing "this will work, I am going to start getting better." i also tried to spread good cheer to those around me.

    One of my worst problems I have been suffering from was the pain and symptoms due to sever nerve damage thru most of my body, especially feet, legs, hands, and arms. This prevented me from functioning as well as sleeping. After that first treatment, my neuropathy problems greatly diminished, sometimes disappearing for days or weeks at a time.

    To me it seems like Benlysta is working almost like peeling an onion, one layer at a time, some big and many small. It is only 4 months now and I still have a long ways to go, but the good changes are happening. I feel positive changes occurring and I spend far less painful time and days in bed. The week prior to my infusion is the hardest as the symptoms start to fire up again, but quiet down afterwards.

    Please take note of what I learned this month, that is, to still be prudent in what You do and expose yourself to. For the first time ever we had 3 important family trips come up after I started my treatments in Aug. Two between my last infusion, one of which was7 days in Disney World with our 4 children, their spouses, and our 7 grand children. The first of Nov, Florida greeted us with brilliant sun and days reaching 90 degrees, the whole time we were there. No matter what I did, sunscreen and blockers, long clothing, wide brim hat, big sunglasses, hiding in the shade, even riding scooter, the sun and time took its toll.

    In our car ride home to VA in less than an hour on the rode, we crossed the elusive zone of sunny weather and into rain, wind, and temperatures dropping 40 degrees. You know my body did not accept that well, especially added to 11plus hours stuffed in a car. I have since been flushing my system with whole foods, healthy liquids, and providing it with rest since. This is the worst I have felt since starting my Benlysta treatments.. My next infusion is in two days, so help is on the way.

    Hopefully others will learn from my experience, and remember to keep being kind to your body during this long healing state. I know I was very rough on myself this past month, however, I do not know that I will ever have the opportunity for these special family trips again,. they were dreams come true. Still, having over done it, i now need to hope I can make up for the ground I lost. With Prayer, hope, and belief, in my heart, I see a greater future with Benlysta.

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