This week I passed the milestone of 11 months since starting Benlysta infusions for my lupus. On Monday this week, I had my 13th infusion. I woke up just a little over one hour before I was supposed to be downtown at the hospital. Ironically, the day of my infusion was probably the groggiest, foggiest morning I experienced all month long, so I was grateful my daughter had volunteered to drive me there. If not for her help, I would have had to cancel my infusion due to the intensity of my morning CNS lupus symptoms.
I didn’t have time to get ready for work before going to the infusion, especially after turning off my alarm and falling back asleep for an extra hour. So, we left shortly after I got up, and my daughter expertly navigated Arizona’s heaviest freeway heading south in the traffic of a sluggishly moving river of morning commuters. Sipping my second cup of wake-me-up coffee and feeling nearly “brain-dead,” I was especially glad to be a passenger, and that I was not me behind the wheel at 7:00 a.m. that morning! The thought of me driving that early is a scary proposition! We arrived at the hospital’s outpatient infusion center with a few minutes to spare.
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.
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.
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.
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!