One Patient's Positive Perspectives

Posts tagged ‘medicine’

Lupus and tea at quarter past three

Question Mark Key on Computer Keyboard

Lupus and tea at quarter past three

Hugged by a bubble of dim computer light, the keyboard and tablet cast a faint glow over the blankets. While sleep eludes, night thoughts invade the quiet darkness.  He slumbers beside as his slow baritone rumbling comfortingly quivers throughout the room.  Sleepless nights seem merciless when rest seems needed most!  Lingering weariness from a busy day and goosebumps from a cool winter chill disrupt efforts to relax.  Drawing the soft comforter up is warming and eases the chill, but still fails to bring on sleep.

A recent bout of insomnia has made ordinarily foggy lupus mornings more difficult.  Perhaps there are multiple culprits to sleep deprivation.  After spending the last couple of years in college, writing research papers well into the night has destroyed circadian rhythms and perhaps deregulated sensitive endocrine balances.  To reach the arduous goal of earning a late-life college degree, unfortunately, sleep became secondary to prescribed bed times, and school work took precedence.  Life has not yet fully adjusted to new patterns after recently finishing college.  Graduation just before the holidays blended into the normal seasonal stress and distractions.

Only 10 days left until Christmas!

After graduation, there were ten days until Christmas, so the few remaining nights were feverishly used for shopping, wrapping, decorating, and cooking.  There has still been no post-graduation let down.  Immediately after New Years, we moved our bedroom furniture into our home office, and began the reconstruction project in the master bedroom suite.  Dust, noise, contractors, and morphing levels and states of household chaos have permeated all the other rooms in the house.  This has affected any sense of normalcy, and perhaps sets life on just enough edge to rob me of rest in the night.

Surging peripheral neuropathy pain

A surge in nightly onset of peripheral neuropathy pain in legs and feet has contributed negatively to attempted sleep outcomes.  Recently careful timing of nighttime Gabapentin to equalize between twice daily doses is helping reduce the frequency and severity of nightly symptoms.  When the thirteenth or fourteenth hour arrives after morning doses, it is more likely that neuropathy symptoms will set in.  If medications wait until after the onset, it takes over an hour after a new dose to get any relief, and often pain medications are required to quiet the pain enough to allow sleep.  Overall exhaustion increases the likelihood of the this sleep enemy, so this might be a cause, too.

Eliminating trough effect

Eliminating steroid trough effect

Perhaps the split dosing of prednisone between morning an evening might also contribute some to the problem.  A few months ago, quite by accident, we discovered that adjusting daily prednisone doses from single morning 7 milligrams to split dosing of four milligrams at nights and three in the morning immensely improved morning mental clarity.  The Rheumatologist described the positive result as a reduction in “trough effect”, or more simply put, a lack of prednisone dropping to very low blood levels in the night.  A potential drawback impacting sleep may be increased nighttime steroid levels.  Even so, because the net morning result is so much better than it was with single dosing, despite any negative influences in reduced nightly REM sleep, split prednisone dosing was still well worth the risk of any lost rest.

Split dosing steroids not for everyone!

Finally, this spilt dosing is not good for everyone, and in fact, is usually medically discouraged for good reason!  While ordinary medical wisdom recommends full daily steroid doses are best given in the morning to better replicate normal endocrine activity, this was not a concern in my situation.  Since we no longer have any realistic hope that my normal cortisol production will ever resume, after years of failed trials to do it, normal precautions that protect future steroid production were meaningless.  However, in patients that still have some normal cortisol production, morning dosing is recommended to reduce potential suppression of adrenal production of natural cortisol.  But, for those who are completely steroid dependent, the medical wisdom notably shifts to equalizing blood levels throughout the day.  So, split dosing in this case makes perfect sense.

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Wrapped in the promise of dreams

This quickly aging new year is a fleeting annual opportunity for new beginnings.  So, speaking like a seasoned procrastinator who waits until tomorrow to start getting more sleep, here I sit in the night lamenting my loss of it.  I am determined to start earnestly seeking this elusive commodity of sleep.  So, after reaching the bottom of a third cup of decaf tea, my thoughts of sleeplessness finally give way to sagging eyelids.  Slipping the computer onto the bed table and sinking under the warm blankets, darkness finally wraps around me with the promise of dreams.

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Bring me a lupus infusion with epidurals on the side

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

Managing Lupus While Managing Grief

Stress of loss

Stress of loss

The stress of loss

Losing a loved one is hard on everyone, and it seems we can never be ready for it.  Over fifteen years ago mom passed away unexpectedly, and now my dad has gone after a four-year battle with Alzheimer’s.  Although I thought I was adjusting to the idea, and in a way I was already grieving the loss of my father as I knew him before Alzheimer’s, it feels different than I thought it would.

It is just difficult any way you look at it.  When people you love are gone, it leaves a vacuum where a warm loving soul once was in your daily life, and it hurts.  With a deep ache beating in your chest, your heart sobs in silence.  Pain is stressful, whether the cause is physical or emotional, and that stress has predictable influences on health.  Stress can weaken us physically, weaken our immune system, or aggravate an auto-immune disease, such as lupus.  Sustained stresses like grief, stretch out their load on the normal endocrine balance, that is already somewhat out of whack when a person has auto-immune disease.

Fight or Flight

Fight or Flight

The part of our body chemistry that produces a surge of helpful chemicals to sustain us during a fight-or-flight situation or crisis, becomes very strained during periods of prolonged, sustained stress.  This crisis mode response can only continue for limited time, while glands pump out “emergency” help.  After a while, a body’s chemical response to continued stress becomes weaker and weaker, and the person experiencing sustained stress has a seriously reduced ability to cope in the face of continued pressure.  For someone with lupus, ongoing presence of stressful situations become the perfect environment for lupus to flare.  So, it becomes especially important to communicate well with our doctors about the major life events we are experiencing and about how these stressors are impacting physical health.

The storms of life

The storms of life

The storms of life

Over the years, many helpful articles about employees going through life’s most stressful events have passed over my desk in human resource magazines and legal management journals.  Usually they merit at least a few minutes of my attention, since employees routinely drop by my office, sit down with a sigh opposite me, and start to talk about the major events taking place in their personal lives.  Sometimes, employees have multiple stressful events raining down on them at one time, and some face virtual storms of stress, and even rarely an occasional emotional or spiritual hurricane!

My heart goes out to these burdened co-workers, and I privately pray earnestly for them, because I know personally how hard it can be to cope when flood waters of stress wreak havoc and bring unexpected mayhem.  It is no wonder these overwhelming events are commonly called “the storms of life.”

Stress affects people physically

The different responses people show to these events get my attention, and often I’m motivated to start a conversation about what they are experiencing.  Ever since reading an article years ago about how stress affects people physically, I have been especially focused on how it impacts employees, friends and others in my personal life when they go through unusually stressful circumstances.  What I see most often is employees who struggle with either the severe illness or death of a family member, face surgery, are moving, their spouse has lost their job or they are having turmoil or difficulty between members of their household.

I too, have had my share of these stressful situations, and some of these have triggered past lupus flares and at times some lasting escalation of lupus severity.

Measuring the stress of life’s events

Measuring Stress

Measuring Stress

A couple of research psychiatrists, Thomas Holmes and Richard Rahe, studied over 5,000 people to understand better how stress affects health.  They developed a time-honored list of the most common stressful life events that people routinely face, assigning a “stress score” to each type of stressful event.  The total score falls into one of three basic ranges of impact.  People with lupus or any other auto-immune disease may easily find that their stress score indicates a moderate or high likelihood of illness.  The items on the list may seem obvious, but reviewing it was thought-provoking for me.

Striking up a conversation about the effects of stress on people who are going through rough times usually starts by mentioning that they are experiencing one or more of the major stressful life events on “the list:”

Life Event Stress Score
Death of a spouse 100
Divorce 73
Marital separation 65
Death of a close family member 63
Imprisonment 63
Personal injury or illness 53
Marriage 50
Dismissal from work 47
Marital reconciliation 45
Retirement 45
Change in health of family member 44
Pregnancy 40
Business readjustment 39
Gain a new family member 39
Sexual difficulties 39
Change in financial state 38
Death of a close friend 37
Change to different line of work 36
Change in frequency of arguments 35
Major mortgage 32
Foreclosure of mortgage or loan 30
Change in responsibilities at work 29
Child leaving home 29
Trouble with in-laws 29
Outstanding personal achievement 28
Beginning or end school 26
Spouse starts or stops work 26
Change in living conditions 25
Revision of personal habits 24
Trouble with boss 23
Change in residence 20
Change in schools 20
Change in working hours or conditions 20
Change in church activities 19
Change in recreation 19
Change in social activities 18
Minor mortgage or loan 17
Change in sleeping habits 16
Change in eating habits 15
Change in number of family reunions 15
Vacation 13
Christmas 12
Minor violation of law 11
TOTAL EVENT RELATED STRESS SCORE:

Add up the numbers of stressful events that apply to you in the past two years to get your own score: _____

th3SLP7QUMHow might the level of your life stress be likely to effect your health?  If you are a lupus patient with active disease (53), high medical costs (38) and have lupus affecting your ability to keep up with recreation (19), your social life (18), and pain keeping you from sleeping well (15), you could easily have a score over 140.  Add just one more event on the list, like moving (2) or getting pulled over for a traffic ticket (11) and you have a moderate risk of illness.

Score of 300+: At risk of illness.
Score of 150-299: Risk of illness is moderate (reduced by 30% from the above risk).
Score <150: Only have a slight risk of illness.

Read More about the Holmes and Rahe Stress Scale @ Wikipedia.

The speech about stress

Down-to-earth advice

As the manager of a government legal department, when an employee goes through these rough times, one of my roles is to approve sick leave, bereavement leave or vacation, or to encourage them to otherwise take care of themselves.  After pointing out that they are going through one of life’s most stressful experiences, the advice is usually down-to-earth and pretty simple: 1) breathe, 2) drink, 3) sleep, 4) rest and relax.

Why?  Breath deeply, because so often people seem to psychologically hold their breath during intense stress, and deep cleansing breaths help reduce the effects of stress.  Drink plenty of water because it helps the brain function, supports the immune system and flushing out toxins from the body (usually I am the one who goes around offering glasses of water to everyone.)  Get enough sleep and rest, because stress is exhausting and emotionally fatiguing, and lack of sleep just increases stress even more.  If proper to my relationship with the person, I also suggest prayer, Bible reading and hymn singing in the times when sleep just doesn’t come, because finding spiritual rest through these alternative activities can help in the absence of sleep.  Rest and relax, because they need to be reminded to give themselves some slack and to realize that what they are going through is a normal human response to stress, and to be expected.

thRTKMIR17Every new employee we hire gets a similar version of this speech as part of their orientation, along with explaining that almost every employee we have hired in the past 25 years (except one exceptional person who either listened especially well to my advice or was just an rare physical specimen) became sick within their first month on the job.  Every employee gets the speech again as a friendly reminder, every time they go through something on the top half of the list, or any combination of things from anywhere on the list.

This type of stress seriously affected my health many years ago.  Just one week after my mother died, my father and I both visited his doctor to treat our severe bronchitis.  Grief and bronchitis do not go well together!  During the year that followed, I was naturally still grieving deeply, and that normal process had its impacts on my body and my lupus.  Within a few weeks after losing my mother, I was hospitalized with a ruptured abdominal artery, infected appendix and ruptured ovary (a very close call!) and within six more months my spine destabilized around an old trauma (and required neck braces and neuro rehab) while my lupus escalated to organ (CNS) involvement.  Within just one year of mom’s death I had graduated from treatment with only plaquenil to requiring adding weekly methotrexate, daily high dose prednisone and Imuran (azathioprine).  For ten more years, my medications never could be rolled back to the earlier levels, and eventually even those would no longer control my lupus.

Four resolves in grief

So, it is time to follow my advice.  My hope is that as I now grieve my father’s death in the coming weeks and months, the advice repeatedly shared with others will ring in my own ears and hopefully may help me remember to grieve healthfully.  These are my four resolves…

breathe

Breathe, hydrate, sleep, rest and relax!

First, I will breathe!  Taking long draughts of air, in and out, deep and full, inhaling, cleansing, body-calming breaths.  I will take my asthma sprays on schedule, and listen for my body telling me when it is having trouble, and I will make a point to intentionally breathe.

Then, I will hydrate, hydrate, hydrate.  Easy to say and harder to do.  But now, there is no fluid better for me than the cleansing goodness of pure, refreshing water.  I will carry it with me in the Arizona heat as I drive around, at home or work pour another glass often, and even set a timer if necessary to remember to drink water.  Eight ounces every hour, would not be too much water!

Next, sleep is the hardest resolve to carry out right now, but I will keep working at getting the sleep I need.  Since lupus robs me of so much sleep when I wake up in the middle of the night with pain, this takes some extra effort.  Yet, I am promising myself to make the most of my opportunities to sleep.  This means I need to replace my broken c-pap machine as soon as possible, since I fall asleep faster, rest better and wake up less often at night when I am using it.  Using my c-pap for my sleep apnea helps reduce fatigue, and that’s a good idea, especially now.

Last, I know that prayer, Bible reading, singing hymns and playing them at the piano are forms of worship that can become a bridge to real rest.  When I simply cannot sleep, I will turn to these until I get exhausted enough to fall back asleep, and in the process find a different kind of peace and rest.

When emotional or physical pain robs me of sleep, there is no place like the shelter of the Most High to calm and comfort my weary soul!  In the shadow of His wings, I sing for joy!  Even in my grief, even in the valley of the shadow of death, I will fear no evil, for thy rod and thy staff, they comfort me.  These were some of the last words I read to my father from the Bible a few hours before he left us.

Now, they speak peace and health to my heart as I grieve and remember.

Benlysta for Lupus Without Infusions?

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Benlysta (belimumab) for Lupus

 FDA approved Lupus drugs

Clinical trials are an incredibly important contribution to new drugs for lupus.  Before 2011, there had not been any new FDA approved drugs for systemic lupus in over 50 years.  Before that there were only three, aspirin, plaquenil and prednisone.  Now, with Benlysta, there are four.  New biologic drugs like Benlysta are constantly being researched and we will likely have more soon.  We all hope it won’t take another 50 years to get number five!  In the mean time, there are still things we can do to improve treatment.

using autoinjector

Using Auto Injuector

One of the drawbacks to Benlysta is the great cost for the drug and the infusions.  It is mixed following exacting rules before infusion, taking at least thirty minutes to prepare.  Living within walking distance from my new rheumatologist, I am also within each reach of the research arm of the practice.  The practice is participating in a handful of lupus related research trials, including some patients from the first Benlysta clinical trials.  The next chapter of my lupus treatment will mean a break in the monthly infusion routine.

What comes next?

autoinjector practice

Practicing self-injection

After having my last infusion a few days ago, in about ten more days weekly self-injections of 1/4 the amount of Benlysta will begin to replace monthly infusions.  The next couple of months will be spent participating in a clinical trial to test an auto injector that delivers Benlysta as a subcutaneous injection.  Last week, I had my training in how to use the auto injector and shot (wasted) a whole real dose of Benlysta into a fake “skin” device to prepare for my first self-injection.  The plan is to do the first and two of the other eight injections under the watchful tutoring of the research nurse, and the rest of my weekly infusions are at home.

Official information about the clinical trial

GlaxoSmithKline’s Phase II Open-Label Single-Arm Study to Evaluate the Reliability of an Autoinjector that Administers Belimumab Subcutaneously in Subjects with Systemic Lupus Erythematosus (SLE)

The primary outcome of the study is to assess the suitability of the autoinjector for self-administration of belimumab by subjects with SLE in real-life conditions. The study will assess the use of the autoinjector inside the clinic setting and outside the clinic setting. The study will also assess the safety and tolerability of belimumab administered subcutaneously (SC) via the autoinjector. Subjects will self-administer belimumab SC into the thigh or abdomen using the autoinjector device for 8 weekly doses. Subjects will return for a follow-up visit 4 weeks after the last SC dose of belimumab. All injections will be assessed by the investigators for success based on direct observation and/or the subject diary. A total of 118 subjects (treated with at least one dose of study drug) are planned to be enrolled in this study. The study will last through mid-2015 and is being done in these cities:

Gilbert and Phoenix, Arizona
Lansing, Michigan
Charlotte and Greenville, N. Carolina
Greenville, S. Carolina

autoinjection sites

Benlysta injection sites

Nearly foolproof auto injector

It seems like this will be nearly foolproof.  I am no stranger to “Sub Q” injections, after giving scores of them the old-fashioned way helping my husband with blood thinning Lovenox injections.  After a bed-side crash course in his hospital room a few years ago, I became a pro at using short-needles with pre-filled injections, and jabbing him in the tummy to help stave off the return of massive blood clots.  I stayed pretty calm doing them, so I have no apprehension about doing them with an auto injector with Benlysta.  In comparison, the new auto injector seems like child’s play.  Just like many other “Sub Q”  injections, it is injected somewhere either in a U-shaped area around the navel, or in either upper thigh.

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Making a difference

Fewer flares?

Because with the monthly infusions I tend to flare during the last week, it will be great to find out if evening out the dose to weekly injections will help prevent the recurring monthly flare cycle. I will be keeping a journal as part of the study, so look for updates here, too.

It is my hope that by my participation I will help decrease the costs of getting Benlysta to the people who need it most.  One bonus?  During my participation in the clinical trial, there is no cost for seeing my rheumatologist, lab work or the medication.  Also, at the end of the trial, there will be a small stipend coming to me of $5o for each in-office visit during the study.  There is always room in my wallet for a little fun money!

Benlysta for Lupus, the first 1,000 days

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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!

 

 

HHS Lupus and General Health Chat on May 29, 2014

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Questions About Lupus?

Lupus Chat with HSS

On the afternoon of May 29, 2014 at 5:30 p.m. EST (2:30 PST) the Hospital for Special Surgery (HSS) will host a one-hour live Facebook chat featuring both the Lupus Foundation of America and Molly’s Fund Fighting Lupus about Lupus and General Health.

This new chat is a follow up in a series to answer many remaining questions asked by participants on a chat on February, 2014, that featured Rheumatologists Dr. Jane Salmon and Dr. Michael Lockshin, Dermatologist Dr. Joanna Harp, and HHS’ Rheumatology Social Worker Emily Reiss, LMSW  answering questions on conditions co-occurring with lupus and social work.  This chat picks up where the February chat left off, answering a host of added lupus-related questions.

What is HSS?

HSS is based in New York City and is nationally ranked #1 in orthopedics, and #4 in rheumatology by U.S.News & World Report (2013-2014). HSS has locations in Manhattan, Queens, Long Island and Upstate New York, as well as Connecticut, Florida and New Jersey. HSS has been top-ranked in the Northeast for both orthopedics and rheumatology for the 23rd consecutive year.

Don’t miss this!

Don’t Miss Out!

Click on the Link in the image above to go to the Facebook page for HHS and learn more about how to take part in this upcoming online Lupus awareness and educational event.

 

May 15, 2014 Post Update:

Check out the information from HSS’ email announcement that gives more information about the panel members.  It is a little fuzzy, but it gives more detail than was provided in my previous post.

To join the chat:

  1. Visit https://www.facebook.com/HSpecialSurgery
  2. Like the HSS facebook page
  3. Join the conversation

HSS Lupus and General Health Updated Annoucement

Benlysta for Lupus after 33 Months

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33 months of Benlysta

This week marked 33 months of Benlysta infusions for my lupus, adding up to almost three years of taking the only FDA approved biologic medication just for lupus.  Over these past few years, we have seen my lupus gradually quiet down greatly.  This was time well spent on accomplishing a good, but expensive outcome!

So, after contemplating the amount of time that has passed since I started the infusions, I mused over some mental calculations considering other accomplishments that might have taken comparative amounts of time.

Long enough to  build the Titanic

Build the Titanic

Although the past three  years haven’t exactly sailed right by, it would have been more than enough time to carry out one of these feats:

Build the Titanic –  perhaps if they had spent longer in dry dock strengthening the hull of the ship, it would still be afloat today?  I am glad to still be afloat in my career and personal life, thanks to good lupus medications and treatment.  I am grateful that I haven’t completely crashed, burned and sunk, although I came nearly too close to the reefs of prednisone withdrawal at the holidays!

Master a new language – the linguistic experts all say it takes about 2  years to learn a new language by immersion, but learning a language strictly in a classroom takes at least twice as long or more.  However, I have definitely learned the new language of lupus auto-immunity and infusion speak!

Earn a college degree – It takes about three years to finish the course of study for an accelerated bachelors degree, to complete law school or medical school, or to complete a medical residency after medical school.  The only third degree I have received in the past two years was from my previous doctor, when he wanted to know why I wasn’t exercising enough!

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Sail around the world

Sail around the world – most small ocean cruisers take two to three years to sail around the world.  Although some accomplished sailors have done it in less than a year, some have even taken as long as ten years to carry out this challenging nautical adventure.

Launch a new company or rebrand a product – many experts of business say that it takes at least three years to redefine the image of a company or product, or successfully launch a new one. (There’s the nautical theme again!)  New business ventures are generally considered a 3-year journey.

Drift ashore after circling the entire Pacific Ocean several times –  an incredible three years after the tragedy of the tsunami in March 2011, a little battered boat was found overturned on the shore of Daren Township, Taitung County.  Somehow, this reminded me of the “three-hour tour” of the Gilligan’s Island television show of the 1960s, except that it took three years instead of three hours, and this boat washed up on the beach unmanned.  At least my nautical comparison holds up, in that both were both waterborne vessels, but maybe that is stretching it just a bit.

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Asparagus, 3rd year from seed

Plant and harvest a new asparagus bed – it only takes a mere three to seven years to produce harvestable food from asparagus plants started from seed.  The only thing that ever grew in the asparagus bed in my mother’s yard was a stilly cat that planted herself in it, rolling over on each new sprout and hiding from birds in the dappled feathery shade.  If my mother hadn’t loved the cat more than she loved asparagus, I’m afraid the cat would have been planted in the flower bed instead. My three-month old garden yields Romaine lettuce, spinach and chives this spring, producing faster than we can eat it, but alas, no sign of hard-to-grow asparagus!

Become a not-quite formidable opponent – It takes from 3 to 5 years to attain the first belt in karate, and about the same amount of study under a karate master to gain each additional belt after that.

I think I’ll stick to milder athletic competitions, such as tackling a day’s work, grappling with laundry, subduing a sink full of dishes, navigating the grocery store (nautical theme, again!) or whipping up some supper on a breezy spring evening.  Karate sounds too much like hard work to keep my attention for three years.

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3 years to a calmer harbor

So, instead of spending several hours every fourth week of the past 33 months getting Benlysta infusions, I could have accomplished any one of these other illustrious adventures… (or not!)

But on second thought, the investment in Benlysta infusions for my lupus was proven a very profitable one, and has helped me arrive in a much calmer, safer harbor (one last nautical quip!) than I would have otherwise been likely to reach.

[I realized today that I had reversed the order of the words in the title of this post, and instead of the original “Lupus for Benlysta after 33 months” that didn’t make sense, I correctly renamed the post “Benlysta for Lupus after 33 months.” LA 4/1914]

 

 

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