Benlysta: How I Got Lucky
Benlysta: I’ve been on it (LymphoStatB) since 2004
In 2004, depressed and sickened with lupus, I felt myself spinning lower and lower. When I found out about a study concerning a new lupus drug, I wrote to an address provided in an advertisement and long story short, was offered a place in the study.
Frankly, it was pretty scary as it involved infusions of a mystery drug. As far as I’m concerned, putting anything directly into your veins is pretty creepy and the most cheerful news in 2004 was that no monkeys had died. I swallowed hard. Monkeys? The people at Stanford seemed to be quite pleased about this. In the Phase I study, they said seven people (this is the figure I remember) had taken it. One died, but his death wasn’t related to lupus. They said it was lymphoma. Gulp again. I read what I could on the Internet about the drug and was mystified, but intrigued. This was a protein I was missing? Hmmmm. New way to go about a cure. Well, I could stay sick or try this. I took a spin of the roulette wheel. And guess what? I won.
At that time, every day was a struggle to get up, get to work, and function intelligently. I had a persistent itching rash all over my body as well as hives. Giant urticaria would pop out on my face and head cartoon-like, making me look like I had been struck by a tire iron wielded by the Roadrunner. I was so sensitive to the sun that I sunburned under florescent light. I had Raynaud’s Syndrome, which made my fingers tingle, turn red, and swell. They became so painful that I had to use a pencil to search for things in my purse and then carefully sneak in and pull out what I needed. Arthritis ached in my joints and fatigue syndrome made daily life a challenge. It felt like I had weights tied to my feet and that I was slogging through knee-high water. Then came a frightening wasting of the muscles in my arms. Soon I couldn’t lift my hands to comb my hair. I’m not going to bore you with stories of my esophagal spasms, the spontaneous twitching of my leg muscles, the neuropathy on the bottom of my feet, or the way I had to drape myself in cloth and gloves to cross a sunny parking lot to get to the supermarket without burning. Hey—I was a mess and believe me, I knew it.
So I signed up for this study of LymphoStatB, which has now become the new drug Benlysta. From the first infusion, I knew I had the real thing, but everyone got the real thing after six months. We were given infusions every two weeks for three months, then once a month from then on. The tiredness left first. In about three months, I stopped falling on the couch after work. My hives and rashes went into the background, and my joints stopped complaining. In about nine months, my fingers stopped tingling and hurting. No more giant urticaria either. Roadrunner begone! Over a year and a half, I slowly got better and better, but then the study ended. I was panic-stricken, but Stanford set me up with the same study in San Jose and I’ve been there ever since.
I want every lupus patient to know about Benlysta. My lupus stems from runaway B-cells. Benlysta knocks them down. Tells them to behave. This has changed my life. Maybe even saved it.
No one would ever guess that I have this disease. Now I’m not even the least bit sun sensitive. I walk around like a normal person. No more fatigue, arthritis, aches, pains, or rash. Even my blood work is better. Before, I had such low red and white counts that it scared me. Now they are both normal. (I love that word.) The muscle strength has also come back to my arms and if you don’t watch out, I could even give you a great left hook.
I feel that Benlysta gave my body the tools to heal itself. My boat was over on its side and it slowly righted itself. Now I’m in my sixth year of this drug I’m sailing along. No side effects except for a tiredness and some aches right after I get the infusion, which gives me a reminder of the way it used to be. When this mini “infusion exhaustion” is over, I’m back to being the energetic, run-around, do-five-jobs-at-once person I have always been.
Once in a while, I skip my monthly dose of Benlysta and guess what? Between the seventh and eighth weeks, the tingling comes back to my fingers, aches creep back in my joints, and a certain tiredness begins again and I know that lupus, that sneaky wolf, is still lurking.
Benlysta is fabulous and I bless and thank the scientists who discovered it. You guys rock!
