One Patient's Positive Perspectives

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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!

Independence  Day

Four years ago his eyes looked out ahead for times yet to be,
Seventy-nine years from birth till then, but what came next he didn’t see.
Falls, confusion, miscued words, and soon a sudden turn,
Hospital, rehab, sixteen flights before daughter could home return.

He travelled far, a first class flight away from his lifetime home,
Living where helpers and aides would bathe, or help him use a comb.
Then doctors, surgeries, changes in health meant needing a different place,
Humbled and weakened, but stubbornly clinging to dignity’s final trace.

At first, decline was slow, but soon, escalating bit by bit,
next cane, then walker, then rolling around while having just to sit.
Memory, too faded out in stages, either gradually or by spurts,
Children, marriage and life forgotten, the watcher’s heart just hurts.

Daughter’s face was known at first, but then confusion grew,
“Are you my cousin? sister? mother?” at the end he had no clue.
The limbo land his mind dwelled in, imprisoned him in a lonely place,
A soulful gaze from forlorn eyes possessed his troubled face.

Last visits made, scriptures read aloud beside his quiet bed,
Everything saved but before unspoken, at last today was said.
Fittingly, it was independence day, a day when suffering would cease,
then sudden decline, soon slipping away to death’s last final release.

Many prayers offered over the years by children, grandchildren and kin,
That he’d find God’s forgiveness, mercy and love and be truly born again.
Where would his dying soul abide through eternity’s longest hour?
This secret is known to God alone, through His just and gracious power.

I love you Dad, goodbye.

By, Lupus Adventurer
© July 4, 2014

 

Dad and Me

Dad with Nate

Dad and Mom

Dad and the Family Budget

Dad in his mid 50s

Dad and his Uncle Wesley

Dad when I was 5 years old

Dad at his 80th Birthday

Dad at Work Pre-Computer Days

Dad with Mom’s Fragrant Cloud Rose

Dad in Navy – Flight Navigation

Dad Training Navy Pilots

Dad on Leave During Korean War

Dad with Lyle and Ariel

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Dad and Elisabeth

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Dad and Mom

 

I Forget It Can Bring a Smile!

Lupus and heart-healthy exercise

I Forget it Can…

Midway through workout at ten minutes time,
Limbs move in clumsy odd style.
But just a few more, endorphins arise,
I’ll remember why it brings a smile.

Veins whoosh fast at heart pumping rate,
Feeling better after just a short while.
Exercise done and moving is over,
I forgot it could bring such a smile.

Clammy hot skin now wet with sting,
Salty drops hit the living room tile.
Breathing so deep as pain quiets down,
I feel how it makes me smile!

bf flying and landing

Bring a Smile!

Amazingly better after moving just a bit,
An idea so tough to reconcile!
Pain just makes me want to stay still,
Because, I forget it can bring a smile!

By Lupus Adventurer
© July 1, 2014

 

 

Sleep/Rest Goals

Seeking Sweet Sleep

Sleep should never be taken for granted, or pushed aside as a necessary interruption.  It’s merits are poorly underappreciated and pursuit of it can be elusive and frustrating.  Yet, when it arrives uncomplicated and complete, in enough depth to last the entire night, cherish it, be grateful for it, and thank God every time it blesses you with a night full of true rest.  Such was last night!

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Morning Arrived Sweeter

This morning arrived sweeter, fresher and with little morning fog than any recent morning in the past few weeks.  Night after night sleep was interrupted barely before it began, with pain and neuropathy burning in my legs, and even in my fingers, complicated with the remnants of pain from falling on my hip last year.  Nights in succession were spent moving back and forth between bed, kitchen, office and living room, trying in vain to find a comfortable spot, and hoping desperately for the relief of sleep.

biblical perspectives

Meeting a Deeper Need

Yet, as each evening wore on into the small hours of the still black morning, eventually sleep would come in sheer exhaustion and weariness.  There is no book compelling enough to trade for the precious rest I sought, except perhaps the precious pages of scripture.  They, in their own powerful way offer a type of rest that sleep cannot touch, a type needed even more than sleep, meeting a deeper, soulful, ancient need.  They provide truth, words of life and pure rest to my spirit, and stay dear in the dark of a long sleepless night.

But, my frail, fragile, imperfect body still needs the rest of simple physical sleep.  For this sleep I have prayed, and for days the answer did not did not come until now.  Waiting, hoping, that the siege of insomnia brought on by sleep interrupting lupus pain would break, I prayed on.  Finally, the answer to this prayer came in the form of long hours of deep, mindless, dream-filled sleep.  A precious ten hours, one stacked upon the next until the tower of time reached the morning.  At last, sleep!

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Extra Hours of Sleep

Awakened in a start by my husband’s urgency, I selfishly did not mind that he had unintentionally slept through his alarm.  That meant the assurance of a couple of extra hours of sleep recovery for me!  Today marks the end of five days of intense morning brain fog, and the welcome blessing of waking to a rested morning.  Although long hours of sleep come with increased lupus joint swelling and stiffness, mental processes are quickly clearing of fog and the day promises to be a good one.

Today, my prayer shifts to grateful thanksgiving for the not-so-simple blessing of good sleep.

Psalm 63 6-8 Yellow & Purple Pix

 

 

Lupus Book Review

The Lupus Encyclopedia

The Lupus Encyclopedia

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) by Donald E. Thomas, Jr., M.D., FACP, FACR, was recently released.  Within the astounding 43 chapters is an in-depth and exhaustive discussion of the many facets of lupus.  This book is for lupus patients, but is not a quick read, but between two covers holds a broad library of balanced lupus topics that are worthy of investing some time and study.

There is so much in this book, but where should you start?  Begin in the Preface, where Dr. Thomas sets forth seven specific steps a lupus patient may use right away to get the greatest benefits from his book:

  1. Go to the 3 page Lupus Secrets Checklist in Chapter 44
  2. Read the listed specific chapters Dr. Thomas recommends reading next
  3. Get a copy of your medical records, notes, labs, x-rays, etc.
  4. Skim interesting chapters to find and go back to spend more time on ones that apply most to you
  5. Consult the Patient Resources at the end of the book
  6. Visit Dr. Thomas’ Facebook page and follow him on Twitter for current lupus news
  7. Consider sending an email to Dr. Thomas with suggestions for future editions

After ferreting out reliable lupus information for more than twenty years since my diagnosis in the early 1990s, it really seemed there were few sources of fresh information about Lupus, without going to books and references written for the medical community.  This book provides an understandable reference resource appropriate for patients. Happily, there is great depth and much to learn from reading and referring to this important book!

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Check out this new Lupus book!

Dr. Thomas clearly demonstrates his broad understanding of Lupus, and this book should stand the test of time as one of the great books about this complex auto-immune disease.  The first printing of this exhaustive patient reference initially sold out in both hard and soft cover edition at a reduced price through Amazon.com but a few more copies are now available, and more are on the way.  It is also sold at BarnesandNoble.com in both cover styles and as a Nook e-book at the lowest price I have seen online so far.  If other sources are out of stock and you don’t mind paying full list price, purchase it direct from the publisher’s website at John Hopkin’s University Press.

I heartily recommend The Lupus Encyclopedia, and urge you to check it out, too.

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Glorious Morning!

Glorious morning!

These were not the first thoughts or words a few mornings ago!  Many nights, after dropping off into a hopefully deep slumber, the next realization at 2:00 or 3:00 a.m. is aching joints, malaise, deep bone pain or neuropathy pain, breaking up slumber like an unwelcome intruder.

Then, comes writhing around in bed in the dark of discomfort for a while, until it is clear the best option is just to get out of bed.  It would be nice to say prayer is always the first tactic, but unfortunately, that’s just not the case.  But, even when prayer is remembered at the top of the list, God’s answer does not always come in the form of more sleep.  His wisdom is unsearchable!

The pursuit of more sleep

The things that sometime help are reading, checking email, or playing mindless computer games (bubble popping games are the best,) while sipping a cup of decaf fruit tea.   Sometimes these efforts are enough to make going back to sleep possible, but sometimes the only thing that will bring sleep back is medication for the pain.  When  intense neuropathy is the culprit, augmenting nightly gabapentin with pain medications calms the gnawing nerve pain.  When it works, a return to sleep is sweet relief.

But, on nights when none of these tactics work, pain-induced insomnia becomes intensely wearing and frustrating.  These sleepless, painful nights often end with a realization that night is over, just as first rays of morning light peek over the backyard fence.  The sunrise comes much too early, often bringing with it a not-so-glorious morning. Prayers for sleep shift into requests for God’s gracious help to cope with the responsibilities of the day ahead, and for strength, encouragement and wisdom.

Perhaps one unlikely positive that comes out of a painful sleepless night, is that despite simple mental weariness, there is often little brain fog when morning arrives.

Out of a rough wearisome night emerges an opportunity and adventure of faith: accept the uninvited challenge and be unwilling to be undone by lupus!

A great many work days follow this kind of sleepless nights and personal prayers the next day for God’s help and strength never go unanswered.  As professional demands of the day arise, it is obvious my responsibilities cannot be met alone.  Silent prayer becomes my silent partner throughout each hour of the day.  The opportunity to strengthen faith is woven into the fibers of the day’s duties and activities.

On these bleary-eyed days, my human frailty and weakness is unquestioned, and petitions for undergirding and support are quietly fulfilled.  I clearly see and feel God’s presence and nearness.  As I am weak, He demonstrates His strength.  Borrowing from Him, the unspoken need of each hour is liberally supplied.  Shielded from the sight of all eyes but my own, the hidden miracle of God’s nearness and merciful care is displayed.

Not every sleepless or weary painful night is a battle ending in victory over the next day.  There are days when prayers for wisdom and strength are answered with a clear understanding that lupus flare and physical health situations require retreat into a day of rest and recovery.  Human limits, further narrowed by the effects of lupus, sometime require the wisdom to know when to put on armor and go to battle, and when to wave the white flag in a temporary defeat!

This, too, requires the faith and grace to accept what I cannot control.

Hope springs optimistic

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Hope springs…

Yet, hope continually arises, and the unreasonably optimistic side of my nature anticipates every morning will be better than those that precede it.  Every morning bears new promise to unfold into a wonderful day.  However, some days Lupus just doesn’t get that message and temporarily wins a battle or two.

So, the war against being undone by Lupus goes on, and most days the outcome of the battle turns out for the best. Whether met with brain fog after a night’s sleep, or mental fatigue from a sleepless night, there is always an opportunity to pursue personal victory

Routinely, even after a full night’s restful sleep, the first half of every day always seems to have its own special challenge.  As accommodation for my lupus, my employer has allowed me to shift my hours to start work a little later, along with telecommuting on Fridays.  I am very grateful for the encouragement and support of my supervisors and co-workers.

Most of my days begin with a mentally groggy, foggy, slow moving start.

Why brain fog, in plain English?

Brain

Why brain fog?

Why are mornings with lupus so rough?  As best I can understand, in extremely plain English, Lupus can affect morning mental processes in at least two ways, especially when systemic lupus activity has flared.

First, through accelerated cell death, and second, from inefficient clean up of the stuff those cells were made of.  Beside these common reasons, a small percentage of lupus patients like me, with some degree of central nervous system involvement, may also experience organic involvement of lupus wrecking havoc in their central or peripheral nervous systems.

thKPD1JCKQAs body cells go through the process of replacing themselves with new ones, old cells replicate by sort of unzipping the DNA chain inside the nucleus of the cell and new chromosomes floating around in the cell nucleus connect to each half to create two DNA chains.  Focused around the split up DNA chains, the nucleus divides and the cell pulls apart, separating into two new cells.

This cell division and multiplication happens constantly in the body tissues of every living creature.  As these cells multiply they help replace other cells that have died and broken down by a process called apoptosis, or programmed cell death.

Apoptosis can happen at an accelerated rate in patients with lupus.  So, with more dead cells comes more stuff the dead cells were made of.  These pieces of broken down cells put a strain on the body’s ability to clean up and clear these cell fragments away, and can morph into substances that trigger auto-immune response, like lupus.

I found a relatively easy to understand diagram that illustrates this complicated process as a flow chart, located within Chapter 3, “Interferon and Apoptosis in Systemic Lupus Erythematosus” of an open access book on Systemic Lupus Erythematosus by Daniel N. Clark and Brian D. Poole from Brigham Young University.  See, http://www.intechopen.com/books/systemic-lupus-erythematosus

Lupus Diagram of Normal and Lupus Apoptosis Clearance - Copy

Even when it isn’t working properly, the human body is an amazing miracle of engineering.  The metabolism of the human body is intricately designed to repair and clean up the effects of normal programmed cell death that tends to take place more intensely during sleep.  In lupus, the clean up is slow and the excess substances (cellular debris) that remain tend to distort the normal function of the immune system.

The effects of this housekeeping slow down are especially noticeable in the morning, and often are described as “brain fog.” With Lupus, left over cell fragments are not quickly cleared out of the body the way they would be in a healthy person. This cellular debris includes substances that trigger increases in auto-immunity and as well as clog up a body’s normal chemistry.

Build up of extra cellular debris, and increased autoimmune activity can both add to morning brain fog, joint inflammation, stiffness and pain.  Yet, mornings have their own special character, and if not quite glorious, there is still the new hope every morning that the fog will clear quickly, and there will be a great day ahead.

Sleep techniques for lupus pain

Sleep techniques for lupus pain

Reclaiming half the day

However, some days, like the one I wrote about from last week, morning brain fog lasts especially long and makes going to work on time nearly impossible.  After waiting for the entire morning to pass before mental clarity returned, that day I shook my body into action and headed out for my office at noon to reclaim the half-day of work that remained.

Every time I exercise the ADA accommodation my employer has granted for my lupus allowing me to work around my physical limitations, I am extremely thankful.  That day was no exception, as I drove to work my thoughts turned to thanking God for the gracious support and encouragement of my employer.

After muddling through writing about this in the middle of that ‘”brain foggy” morning, the realization arrived that it would be smart to wait and proofread the post later, when writing and thinking skills would be better.

Getting to “later” took several more days! There were just too many grammatical glitches buried in what I had written during deep brain fog to correct quickly, so most of the editing waited for tweaking during Friday’s Benlysta infusion.  After one last reading, proofreading was done and it was finally ready to share.

Read the rest of this entry »

Best_of-badge-lupusA few weeks ago an unexpected communication from an editor at Healthline.com announced that Lupus Adventures was selected as one of the top twelve lupus blogs of 2014.

So, naturally, the next thing to do was go check out the article “The Best Lupus Blogs of the Year” on their site and see what they had to say.

It was extremely heart-warming to read the kind review and to see Lupus Adventures recognized among such a great group of peer blogs.

The Best Lupus Blogs of the Year

Written by Ann Pietrangelo | Winners selected by Tracy Rosecrans
Medically Reviewed on April 30, 2014 by George Krucik, MD, MBA

Lupus, the Adventure Between the Lines

“Do you consider lupus to be an adventure? The woman behind Lupus, the Adventure Between the Lines says it is. “Where an adventure takes you depends partly on the decisions and friends you make along the way,” she writes. This blog is less about the medical aspects of lupus and more about the perspective you choose to bring to it. This blogger’s faith and strong support system nurture her along in much the same way she nurtures her readers. Straightforward and thought-provoking, these writings should be savored slowly.”

bfbabyblueandpinkonyellow

Top Lupus Blogs of 2014

Who are all the other lupus bloggers that were honored this year?  The others are listed below, in the order they were ranked by Healthline.com.  Please check out these other lupus bloggers and perhaps leave them a comment to congratulate them for their excellent work!

The Best Lupus Blogs of the Year

  1. http://despitelupus.blogspot.com/
  2. http://lupusandhumor.blogspot.com/
  3. http://www.flowonlupus.com/
  4. http://www.mollysfund.org/blog/
  5. http://www.lupuschick.com/
  6. http://lupinelife.com/
  7. http://lifedespitelupus.com/blog
  8. http://www.sometimesitislupus.com/
  9. Lupus, the Adventure Between the Lines
  10. http://lupusface.wordpress.com/
  11. http://gettingclosertomyself.blogspot.com/
  12. http://undefeateddiva.com/

I would like to share a special thank you to you, the readers who make this blog meaningful and purpose-filled.  Without each one of you and your comments, affirming “likes”, emails and feedback, there would be little reason to share the ramblings of the “Lupus Adventurer” at all!

Thank you so much for visiting and reading!

LupusAdventurerSig

 

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