One Patient's Positive Perspectives

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1,000 days of Benlysta

This week (yesterday) marked a quiet little anniversary, the 1,000 day mark after beginning monthly Benlysta infusions for Systemic Lupus Erythematosus on August 24, 2011.  So, without pomp or celebration, today begins as day 1,001 since starting Benlysta.  From the beginning, the Benlysta adventure is chronicled here, and a special page indexes all the posts about this journey.

This 1,000 day Benlysta milestone gave me pause to ponder whether there were any other 1,000 day milestones I could  use to compare to this span of time.  A little research led to an interesting group of comparisons, some were serious and some were fun, some were history and culture changing, and some were of fleeting and trivial impact.

1,000 days might be enough to carry out significant change, or long enough to waste accomplishing absolutely nothing meaningful at all. I will let you be the judge, but history will judge with perspective, and ultimately God will always be the final judge.

How long is a thousand days?

1,000 days is equal to exactly 2 years, 270 days (unless one of the years is a leap year, resulting in 1,000 days being equal to 2 years, 269 days. Also, 1,000 days expressed as a decimal fraction is 2.74 years.

1,000 day comparisons

  • thH9WE6Z7AThe approximate length of the public ministry of Jesus Christ from the first miracle in Cana to his death on a cross outside the City of Jerusalem, as documented in the first four books of New Testament, the gospels of Matthew, Mark, Luke and John.  History and life changing!
  • The length of a Columbian civil war (The Thousand Days War) fought between 1899 and 1902 over an ideological conflict between liberals and conservatives that divided families and took the lives of 100,000 Colombians before a mutual cease-fire was reached.  An end to strife.
  • th7SY4JSR2The approximate length of the presidential administration of John F. Kennedy, that lasted 1037 days, from his January 20, 1961 inauguration  to his assassination on November 22, 1963.  A death that shook the nation.
  • 1,000 days from the start of a woman’s pregnancy until her child’s 2nd birthday, a crucial period for proper nutrition that allows children to develop without permanent cognitive and physical delays.  Important beginnings.
  • How many consecutive days a 6th grade boy from Holmen, Wisconsin wore a Green Bay Packer’s player Aaron Rodgers’ jersey, while living in a household of Minnesota Vikings fans.  Much ado about nothing!
  • How long Kate Middleton has been a duchess after marrying Prince William.  She reached the 1,000 days milestone in her marriage and acquired royalty earlier this week on May 20, 2014.  A royal beginning.
  • thSTW4CIIDThe length of time it takes for Landana 1,000 Days Dutch Gouda cheese to naturally ripen, while stored at a closely guarded secret specific temperature and humidity. The fruit of patience.
  • The length of time the famous Schatz 1000 day clocks can run without winding. Schatz 1000 day clocks bear a “54” in a circle on the back of their movements, and were first made in 1954. An engineering marvel for its day.

Lupus before the 1,000 days

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.

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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!

Lupus status on day 1,001

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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.

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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!

 

 

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Comments on: "Benlysta for Lupus, the first 1,000 days" (6)

  1. I signed up to do a Lupus study and discovered it was for they the Benlysta (or placebo) but was turned down because I did not have the right flavor of Lupus. For my participation in the study the treatment would have cost nothing. I have not signed up for any other studies as the site was 2 hrs away but would be interested if it were closer.

    • TC, it sounds like that was a little disappointing, but sometimes the problem with clinical trials is that they don’t like to put really sick patients on double-blind studies (the kind when you don’t know if you are getting a placebo or the drug) because it poses too much risk for the patients on the placebo. If you have insurance, however it might still be covered. What “flavor” of lupus do you have? Do you have organ involvement? Thanks for stopping by Lupus Adventures and joining the conversation! LA

  2. Great news! Thank you for sharing, it is very encouraging. 🙂

  3. Lovely news about your pension!

  4. So glad that God has provided this way for you to be able to be more productive and more healthy so you can live life for God’s purposes! 🙂

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