Today was my fourth infusion of Benlysta for Lupus, since they began in late August. It has been one month since the last infusion, and I am beginning to think I may be just starting to feel the benefits. The medical literature about Benlysta indicates the earliest benefits may be noticed as soon as 8 weeks after starting treatment.
Today, I woke up feeling unusually good, and had one of the best days I have experienced in weeks, or even months. Just yesterday, my friend commented about my unusually spry steps while going up and down the choir loft steps at our church. Feeling good yesterday and today was somewhat surprising to me.
After being out-of-town for several days, and arriving home late Saturday night after a three-day professional education conference in a nearby state, I expected that my lupus would flare from sheer exhaustion. However, so far this trip has not been followed by a lupus flare!
This was a better outcome than I expected.
During the first day of my conference I made a woefully misguided guided choice, and walked the distance between my hotel and the conference hotel twice. Since there was no “straight shot” to get there on foot, I walked the long path that traversed elevated walkways and tunnels, meandering around and through several large (massive) connected shopping malls and resort hotels. After committing myself to walking, I was soon filled with regret. Severe lupus arthritis pain quickly set into my feet and legs, followed by the onset of neuropathy in my legs later that night after returning to the “safety” of my hotel room.
To help alleviate my leg and foot pain, I soaked for over an hour in the luxurious roman tub in my room, until all the pain and stiffness had melted away. Chatting with my husband on the phone, we devised a better plan for the next two days.
To my amazement, I felt reasonably well the second day. I was even was able to get up and out to an early morning breakfast meeting on time!
This feat would ordinarily be very hard for me to accomplish on any given day, since waking up most mornings includes experiencing significant lupus symptoms. My mornings are usually greeted with pronounced arthritis symptoms of joint stiffness, swelling and pain, along with measurable evidence of persistent central nervous system involvement, including cognitive deficit, reduced eye-hand coordination, “deep brain ache” and mental fogginess. My arising sense of well-being is usually complicated by each morning’s adrenal insufficiency symptoms, which linger for at least an hour after a morning prednisone dose.
However, with renewed wisdom and following my husband’s advice, I took taxis during the remaining days of the conference every time I went back and forth between the two hotels. This simple preventative step was worth every wisely invested dollar. As a result, crippling lupus arthritis pain did not recur during my trip.
I worked a short half-day this morning, and then headed out from my office toward the hospital. This afternoon’s Benlysta infusion treatment went very smoothly. Realizing I had forgotten to bring along the adventure novel I started reading on my trip I sought a different diversion. Finding some alternate amusements, I was quite contented to kick up my heels in the infusion center recliner and browse old magazines, watch an afternoon re-run episode of Law and Order, and munch on snacks while sipping spiced tea.
The next Benlysta infusion will be one month from now, early on Thanksgiving week. The month ahead will be an unfolding adventure, as we watch and wait to see how Benlysta may begin to control and improve my lupus symptoms. However, the outcome is in God’s hands, and I am thankful for His will to be done in my health and lupus, whatever that proves to be!