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. http://online.wsj.com/article/BT-CO-20110930-703836.html (wall street journal article)
http://www.thepetitionsite.com/1/cover-Benlysta/ sign the petition