My daughter hung around to keep me company for the next couple of hours, but we only spoke occasionally as Benlysta trickled into a vein in my right arm. She was engrossed reading one of her two-per-day books as I played Angry Birds on my Nook Tablet. Somehow shooting an endless string of little birdie missiles from left to right at grinning pigs on a digital screen was very therapeutic. What amusement, what mindless occupation, what trivial activity! But, it kept me occupied through my early cognitively challenged morning.
at work lupus fog had cleared
Later in the day at work, the lupus fog cleared and my mind functioned much more clearly: filled with thoughts of legal ethics opinions, employee development recommendations, cash-handling policy making decisions and recommendations for contract terms for our outside counsel law firms. But, right then, in the peaceful hour in the infusion chair, I enjoyed the effortless, untaxing, carelessness of my handheld computer game. Such simple bliss! By the time we got back home, I had time to get ready and was finally clear-headed enough to drive myself to what ended up being a pretty normal work day.
I never seem to suffer ill effects from the Benlysta infusions themselves. After nearly one year of infusions, the only side effects I have repeatedly experienced are tiredness and extreme exhaustion for a few days after some of the infusions. After the first two infusions I had a couple of sharp quickly passing “zinger” headaches, but they never returned. Also, in the first few months I had several sinus and bronchitis infections complicating my asthma. But now, after the last few infusions, there have been none of these side effects except post infusion fatigue.
Has Benlysta mad a difference?
Have the Benlysta infusions made a difference? I am measurably better now than I was before I started them a year ago in July, and can really sense a change. Comparing my health then and now, I would say that using scale where 100% is totally healthy and 0% is hospitalized, I was at 50% a year ago just before starting Benlysta, and now after almost one year of infusions I am at 75-85% most days. I still have up and down days, but the bad days are milder and less frequent. The days when I feel as sick as before Benlysta are rare.
Lupus is now milder & gentler
During the past year, I have been able to successfully get my prednisone dose back down to 5 mg per day, and my rheumatologist is really pleased with this outcome. For over a year before Benlysta, we could not successfully get my prednisone below 10 mg, and then it was only briefly dropped between repeated bursts back up to tapers from 20 or 30 mg. It has been several months now since I have had to do a prednisone burst, and I have enjoyed the increased stability and quietness of my lupus.
Benlysta has not made fast changes, but rather slow, steady modest changes that are improving my lupus over time. Benlysta is not a cure, lupus is still there, but after 11 months and 12 infusions, it is a milder, gentler monster than before!