This afternoon marked the 18th month of Benlysta infusions for my Systemic Lupus. In August, 2011, I started Benlysta infusions trying to control the rising level of my lupus activity. A little over a year earlier, I had started coming out of a biologic drug induced five-year near remission. Today, my lupus is well moderated and has quieted greatly. Neither my doctor nor I am calling it remission, but “well-controlled” is an apt description of my lupus now.
During the year before starting Benlysta, my CNS lupus, arthritis and other systemic symptoms had been on the constant rise, things were getting pretty rough, and my ability to continue working was threatened. My symptoms and cognitive disruption from CNS involvement were worsening. However, I had long before failed traditional chemotherapy drugs sometimes used for lupus. My insurance had refused to pay for the biologic drug (Rituxan) that had previously put me into extended remission (the details about Rituxan appeals are best left for another discussion and are mentioned in other earlier posts.)
Two Years Before Benlysta
Two years before starting Benlysta, I had scheduled a trip to the San Francisco Bay Area to visit my dad. This was the beginning of my journey out of remission and toward Benlysta.
My father had lived alone for almost a dozen years after the sudden passing of my mother. He had managed pretty well on his own, with a few periodic check-ins and refresher courses from me to reinforce the month-long “Home Economics 101” training I put him through twelve years earlier. For years he had managed to live a respectable widower’s existence, fulfilling his personal goal to keep the neighborhood widows at bay. But, he knew something was wrong and resigned his post as treasurer of the local American Legion chapter because he was suddenly making math errors in his reports.
About this time, I had registered to attend a legal conference north of the Bay Area in the Sonoma wine country for two days of educational meetings. I coordinated plans to spend several days before and after the conference visiting with my dad. I was helping him make final plans to move to Arizona and put his house on the market, and he had seen a lawyer to set up my role as power-of-attorney for his affairs. He had fallen a couple of times and he realized the wisdom of being nearer to family. Little did we know at first that he would soon have the rapid onset of dementia overtaking him, and that the math errors and a couple of falls were just the beginning.
Just before I was supposed to leave for San Francisco, I called my dad about him picking me up at the subway vs. taking a cab to his house. To my surprise, he seemed nearly catatonic when I spoke with him, drifting in and out of consciousness. During his few lucid moments, I learned he had fallen again, and had since been sitting in his recliner for at least four days unable to get up. He had not eaten nor drank anything, and from his description of his symptoms, I correctly deduced he was suffering confusion caused by kidney infection and failure. He might not have survived had I not called him when I did. One of my sisters was able to get to him immediately and she oversaw getting him to the hospital.
Two Months of Travel
By the time I got to California, he had been hospitalized and was receiving life-saving treatment. After a week of comprehensive care and testing he received a clear dementia diagnosis. He would not be allowed to ever return to his home again, and would from then on need around-the-clock oversight and some ongoing nursing support. He spent the next eight weeks in aggressive physical therapy, learning to help get himself in and out of a wheelchair while regaining enough strength to get around using a walker. Only then I could put him on a plane to relocate to Arizona.
During those two months commuting between Phoenix and San Francisco I seemed to do fine, traveling back and forth every week to spend three or four days in Arizona alternating with three or four days in California. I systematically cleaned out and packed up each room in my dad’s house, while meeting with realtors, estate sale shops, lawn care people and scores of doctors. I also was forced to undergo a crash course in elder law, medicare, social security and pension benefits!
Flying back and forth took some toll on me, but buttressed by intercessory prayer from family and friends, my lupus seemed to stay quiet. I secured an appropriate place in assisted living facility for dad near my Phoenix home, sold his house, and brought him back to Arizona with me in time for the holidays.
Weariness, Insurance Appeals & Giving Up
The next few months were very rocky and wearisome, as it soon became clear my father would need a higher level of care than assisted living. After months of middle of the night calls from his caregivers, and 3:00 a.m. trips to his residence facility (because they were unable to quiet and calm his recurring agitation) I was wearing out. Dad’s worsening dementia and my growing sleep deprivation and increased stress took a big toll on my health. Although we eventually got him into a wonderful dementia/Alzheimer’s care facility perfect for his needs, and my horrible extended stress about dad’s situation was finally relieved, I paid a great physical price.
I was steadily moving out of the long stretch of remission I had enjoyed for so many years, and was rushing headlong into a major unabated lupus flare.
A year after my dad had been first hospitalized in California, my rheumatologist and I starting trying to get insurance approval for Rituxan again, since the clinical trial I had participated in years before had ended. Before entering that trial years earlier, lupus began attacking my liver and I failed treatment with Methotrexate and with Imuran, a drug commonly used to treat lupus rare cases of lupus liver involvement. Failure of standard treatments qualified me to take part in the phase three tests of Rituxan for lupus.
Now, in this new post-remission flare, plaquenil and steroids were all I could take for my worsening lupus. Without Rituxan approval, my doctor and I were in a quandary.
What Next? FDA Approval of Benlysta for Lupus!
I was seriously asking God what to do! Retire with hopes lupus would quiet down? Go back to liver toxic chemotherapy drugs?
I didn’t have any answers for my worsening lupus, and for the second time in my life, I was at a place where I was considering a medical disability retirement. I had once before narrowly skirted past this point after Rituxan turned my lupus around for so long. Since my health insurance refused after several appeals to pay for Rituxan, my doctor and I had finally given up.
Within a few weeks of our “white flag,” Benlysta, the first new drug for lupus in over 50 years, was approved by the FDA for lupus in March 2011. Everyone in the lupus community was in an uproar about the great news.
I was quietly hoping that I might be able to get approval for Benlysta, but after the failed year-long battle with underwriters and medical insurance directors over the earlier biologic drug, I was not confident it would be possible. The published annual price for Benlysta was equal to the drug my insurance had adamantly denied to cover!
After a brief period of discussion with my doctor and an amazingly prompt insurance approval, a mere five months after giving up on Rituxan appeals, I was soon set to begin receiving Benlysta. Now, eighteen months into Benlysta treatments, my health is certainly not perfect – lupus is still there and my lupus neuropathy is somewhat troublesome – but, overall I am clearly healthier than before.
Lupus & Benlysta Now
My overall stamina and strength in are in a wonderfully better place, and I feel more resilient and energetic! Thoughts of immediate medical disability retirement are now off the radar screen again, and I am continuing to plan for the rest of my professional future and a normal retirement in a few more years.
I am praising God for His unseen guidance through past events and issues I could not control, and for the unseen future ahead.
Benlysta seems to have no negative side effects except for a few days of extreme fatigue after most of my monthly infusions. Extra care to prevent infections is always order, but over the past few months I have been exceptionally free of infectious diseases, somehow (by God’s grace!) avoiding strep, influenza and bronchitis, even when its seemed everyone else around me at home, work and church has been sick. I have been both grateful and amazed!
Note: If you are interested more information about my experience during the days, weeks and months after Benlysta treatments started, please feel free to check out my posts starting in August 2011 that explore that early part of my Benlysta journey toward better health and quieter lupus on my new Benlysta Journal page.