My past 1,000 days with Benlysta have significantly stabilized my Lupus, after all other treatments we tried before it were exhausted. 1,000 days ago I had come out of a five-year, Rituxan-induced remission, and was facing the likelihood of an early disability retirement. Those were rough days, things were getting worse by the week, and I felt absolutely physically miserable most the time. But, I was not in despair! The joy of the Lord was my strength, and my daily walk in dependence upon Him helped me keep personal peace, patience and hope.
August 24, 2011
1,000 days ago, my joints were swollen constantly, my CNS symptoms were lasting all day long some days, I was increasing unable to manage my work, had significant cognitive difficulty with memory, problem solving, logical thinking, written business communication, and managing my government law office. I was in an unending siege of bone-tired fatigue. Mouth and nasal ulcers were almost constant, and my health was a wreck. I was in the middle of a long, slow, unremitted lupus flare.
While trying to keep up with my job, I was struggling. I was using up all my sick leave, plus using all my vacation leave in lieu of sick leave, and occasionally had to take a few days off without pay to deal with Lupus. It was a rugged ride and a very challenging adventure!
Benlysta after 1,000 days
Gradually after beginning Benlysta, my Lupus problems began to lessen and then become generally well controlled. I still have bad mornings, but now rarely have to take more than a half-day off due to lupus. I continually have a modest balance left of my monthly sick leave accrual, and have not had to dip into other types of leave for lupus-related work absences in over a year or so. Although I don’t feel like my health is “amazing,” most days I feel generally well and handle my daily responsibilities.
Benlysta is expensive, there is no question, and it cost my employer between $8,000 and $13,000 each month, an annual total of about $100,000 for each of the first two years. A few months ago, my new doctor learned from representatives at GlaxoSmithKline that I was the only patient receiving Benlysta at a hospital. They told her I was “famous” to them because of this unusual requirement, and that they all knew immediately who I was when she started describing me and began discussing my case. I thought that was a little bit spooky!
The first two years of Benlysta cost more than double my current annual cost that my insurance pays now for infusions at my doctor’s office. Only after leaving my previous out-of-network rheumatologist, it was revealed that the insurance-imposed hospital infusion requirement was strictly because my rheumatologist was an out-of-network doctor. Now, with my new in-network rheumatologist, the average monthly cost to my self-insured employer is only $3,500, and my cost is an affordable $35 co-pay.
Thankful for Benlysta
I am thankful that because of Benlysta, a premature end and early medical retirement from my career was averted narrowly . This month, I finally reached full retirement age based on years of service and age, and now qualify for my full government pension. Now, if for some reason I need to suddenly stop working for health reasons, my full pension is available to support me through life’s next chapter.
My hope is to work at least about 18 months longer, when my retirement percentage formula will reach the last higher level pay adjustment before reaching age 63. I plan to be out and about enjoying new lupus adventures before that age!