One Patient's Positive Perspectives

Posts tagged ‘exhaustion’

Lupus and the recurring visit of the sloth

sleepy sloth.htm

Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

Advertisements

Lupus and 200 hours with Benlysta

th (4)

Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

Returning from East Coast Lupus Adventures

thDDSVWJG3After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

th2C28Z9N0Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”

Lupus and Getting into the Spirit of a Christmas Shopping Safari

Today was hair day!

Today was hair day, and there was a two-part plan!  First, it was time once again for the every eight week ritual of shampooing, hair dye, scissors, a blow out and great conversation during the session of hairdo taming and transformation.  Despite lupus and the handfuls of hair in the drain after every shower, there is a lot of thick hair left for the stylist to work with, arguably a lot more even than most people without lupus.

So, because of all that over abundant hair, there is a lot to dye, cut and dry. Time in the salon usually is measured by half-days and not just a couple of hours, but always at least three hours.  It takes a patient hairdresser like Rosa to handle the work diligently, especially after our recent shift to thicker oil-based hair dye.  It takes longer and requires smaller sections of hair for coloring the roots properly.

Manicure recovery time!

Today, since it was Christmas week, the hair appointment stretched on into a visit the nail tech Stephanie. Pulling out a personal bottle of shimmering red polish from my purse, and requesting a basic manicure and polish change to replace chipping remnants of last week’s manicure, salon time extended yet another hour.

This was nice!  Aching knuckles were soothed by a soak in warm water, followed by a gentle hand massage (by far, the best part of any manicure.)

Emerging from the salon into the adjacent department store, it was now time for part two!  Justifying browsing through the dress section with the need to allow polish to dry and cure before driving home, then set out on foot in the opposite direction from the parking lot.  A safari adventure had just begun, venturing out into the wilderness of a  mall at Christmas!

More than two arms could hold

There were restless natives everywhere, searching through dense racks of hanging garments  Soon, the idea to finish Christmas shopping pulled me on through uncharted expanses of the wilds of sale ridden shops and kiosks.  The natives scurried to and fro every direction around my path, carrying burdens and parcels to unknown destinations and homes.

Finally reaching the oasis of Macy’s department store, soon all the sought after fruits of diligent foraging were added to my sacks.

Eventually, the weight nearly exceeded the load two arms could hold, and with one sack in each hand, they were slung over each shoulder and carried the remaining part of the journey much more comfortably in double back-pack style.  Lupus arthritis began to pull and weigh down each step, and soon feet were dragging along in a weary, exhausted cadence.

Oh no!  The painful realization hit that my car was parked at the complete other end of the mall!  A series of slow deliberate steps led all the way back to the salon and then the car.  It seemed like it took forever.

Safari was over, the desired trophies all stowed in the trunk, and a weary wanderer seated safely in her little car, headed home to a waiting husband and easy chair.

Lupus adventures of a rain-washed garden morning

Gentle rain fell in the night

Gentle rain fell all night

Outside gentle rain fell steadily all night long, playing its soft mumbling music as lupus neuropathy and sleeplessness led to a first cup of decaf tea. Soon, the cup was cool and empty, and in the dark chill of night, it’s comfort and warming gone.

More cups followed in a cycle of comfort and cooling until the counting was lost and the morning was nearing. Sitting alone on the counter, a white saucer held a half-dozen soggy tea bags and a single spoon.  Then, exhaustion overwhelmed and sleep was at last possible.  Many long days filled with many concerns had also weighed heavily on a mind much too troubled with the cares of life.  Added to lupus and it’s challenges, stress and auto-immunity had taken their toll.  But, at last, there was sleep.

grass

Soaked grass glistened

A few short hours later, morning came especially hard.  But the outside called, and the yard was unusually fresh and scrubbed by the evening’s showers.  Soaked ground glistened, and the moist lawn was saturated.  The air was crisp, moist and fresh, and filled with aroma of damp leaves and soil.  A chorus of giddy birds filled the cool morning air with vibrant chatter, as their song rose in the peaceful freshness of the morning.

It seemed that for a few moments, time stopped for me to briefly to experience the pleasure of a perfect, peace-filled instant. Gently slipping into the porch swing, leaning back and inhaling deeply, my eye lids closed so all my senses could taste and drink in the delightful morning.  If ever there was true simple bliss in this humble mortal world, it can surely be in simple joy of a perfect restful pause such as this!

Creator

Mighty, caring Creator!

Soon rejuvenated beyond the fruits of my shortened slumber, thoughts of prayer and gratitude formed in my heart and mind.  Such rich blessings placed all around me by the hand of a mighty, caring Creator, just waiting for me to notice and appreciate.

Did He envision the comfort and encouragement such an instance like this would bring?  In His infinite knowledge, mercy and love did He plan for even this single moment’s small blessing?  Who can know a weary heart’s simplest, and also deepest needs.

The God of my undeserved salvation surely does!  In His matchless mercy and kindness, it would seem He planned for providing even simple joys like this!  Prayers of words alone were absolutely inadequate, as in my grateful heart deep emotions mingled silently with unspoken thoughts of thanks.

Chilled air rushed deeply in with each breath, filling the deepest corners of my lungs with coolness.  It seemed within a few brief seconds weariness vanished, and a deep calming rest supplemented for lack of true sleep. Lupus not withstanding, my body felt strong and restored!

The day called

The day ahead called urgently

But then, the day ahead now called urgently, ringing its intrusive alarm to pull me toward resuming thoughts of responsibilities and care.  It promised to be busy and full of much to manage and do, but I was now ready for the schedule ahead.

Perhaps these moments are the reason we build porches, manufacture patio tables and chairs, and spend hours and small fortunes on landscaping and lawns.  We surround ourselves with these iconic items, hoping for snippets of time like this to enjoy ourselves in their midst.  For these precious glimpses of perfectness we plan and prepare.

Lupus and believing in mornings...

Chorus of generations of birds

Yet, it would have been too easy to slip right past this common opportunity, to forget to stop, sit a spell, or savor the beauty of finding this moment of perfect peace.  This is a nearly eternal moment.

Time has not seemed to move one second between stop off points, between the strung out lifelong series of moments like this.  They all seem somehow connected, and that perhaps generations of birds have seamlessly continued the same choral masterpiece, falling long ago upon ears of a seven year-old girl — and who now sits on my porch as a grandma!

Fluttering

Fluttering from dandelion to dandelion

Moments like these are when all seems right with the world, and the soul of a little girl returns to my heart.  Decades — no, half a century — has passed and it seems like that the same little girl who sat in the cool brisk dampness of her mother’s backyard, reveling in the birdsong, moist grass, flowers and earthy fragrance, is here, now.

No time has passed at all, and perhaps she is really the same little girl sitting on this back porch today, slowly sipping the delights of this morning’s fresh washed yard.

She closes her eyes and finds the same pure enjoyment of morning as did the little girl of yesterday who sat wiggling her bare toes in the soothing wet grass of her mother’s breezy back yard, patiently watching a Monarch flutter and float from one dew-kissed dandelion to another.

Both girls closed their eyes and savored their precious gift of morning.

Lupus and the undying hope of a glorious morning

thB2P5180J

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

thBQH3GEF5

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.

(more…)

Lupus and waving the white flag of surrender

Prednisone - "go to" drug for autoimmune disease

Prednisone is a “go to” drug

Lupus and steroids are often paired, since there is no managing lupus or any other auto-immune disease without this basic powerful drug.  It is often a first-resort “go-to” weapon in the arsenal of defense against acute flares of lupus, the prototype autoimmune disease.

The perils, and yes positives, of ongoing steroid use are often discussed.  It provides powerful auto-immune suppression, and yet has some potentially disabling long-term effects.  While knowing all about the long-term risks,  there are some of us lupus patients who find it nearly impossible to wean off this at-times mandatory drug.

Dropping to 3 mg

Dropping to 3 mg

I have been on low dose steroids from five to ten milligrams daily for over fifteen years, ever since my lupus started an overt attack on my central nervous system.  After CNS involvement, then came liver involvement, and eventually neuropathy developed in my peripheral nervous system. Once lupus activity rose to the level of organ involvement, my CNS continued to be involved in the episodes of flare that followed.

Since starting Benlysta over two years ago, I was successful dropping my prednisone dose very slowly from ten milligrams daily to five milligrams, and finally leveled out pretty well, staying there for several months.  I had reached and maintained the smallest sustained daily dose I could tolerate at any time during the past fifteen years.  My lupus was pretty stable.

Then, a few months ago, my rheumatologist started insisting that I should attempt a long, slow, complete withdrawal from prednisone.  [I am his only patient receiving Benlysta infusions still on prednisone.]

I seriously did not believe it would work, but reluctantly promised I would give it an earnest, honest try.  Despite my better judgment, I went ahead and complied.  So, monthly I have dropped my dose by a half milligram daily.

It has been very difficult, but I have tried to be consistent and careful.  The last thing I wanted was to melt down completely!

Predictable crash!

Predictable crash!

But, then the dreaded crash happened anyway.  Mix hosting Thanksgiving dinner, shopping and planning for Christmas, stressful work responsibilities with reduced staff support, and lupus, and for me the result is usually very predictable flare!  Remove steroids, and the predictable result is not promising.

At the beginning of December, my dose had finally reached an all time low of three milligrams.  For the next couple of weeks, I continued to slide down, a little more each day, toward an eventual crash ten days before Christmas.

These signs and symptoms were present and worsening daily:

  • Couldn’t think, do math or keep track of the date
  • Using incorrect “almost right” words
  • Forgetting people’s names
  • Forget things I had done or said more than normal
  • Coordination and depth perception problems
  • Problems focusing long enough to write a grocery shopping list
  • Falling behind in work responsibilities
  • Lost the mental energy or creative thought to write or blog
  • Uncharacteristically moody, weepy and at times despondent
  • Harder than normal mornings, taking many half-days off, using up most of my sick leave
  • Couldn’t get up and get out the door to work on time, even after several cups of coffee
  • Housework usually within my normal ability was exhausting and overwhelming, and my husband had to help me
  • Christmas shopping required help from my husband to mentally focus and finish
  • Worsening bone tired fatigue, all day long every day
  • Mouth and nose were filled with mouth ulcers
  • Lungs were hurting, it was hard to inhale, and my asthma flared
  • Arthritis and joint swelling was in acute flare, lasting all day
  • Tendons became increasingly stiff and easily inflamed
  • Singing voice became hoarse, lost mid range vibrato, cracked on non-strenuous notes, and couldn’t sing any high notes
  • Cracking and peeling skin on my hands
  • Cuticles were unusually red and angered
Sleep-Singing My Parts!

Sleep-Singing My Parts!

I started doing new research about adrenal/steroid insufficiency symptoms to try to find if any of these were signs of adrenal insufficiency, and many of them were, and the rest were signs of general lupus flare or CNS lupus flare.  I talked to my husband about it, and we prayed for wisdom about what to do.

Then, the last straw was on a Sunday, a couple of weeks ago.  Something was clearly very wrong.  I couldn’t even stay awake in church after three consecutive good night’s sleep, nor during a two-hour choir practice.  I fell deep asleep each time I stopped singing, and even woke up once while “sleep singing” my part!  As a serious vocal musician, I can honestly say that after over forty years of singing in choirs, I have never done that before, not even after all night study before college finals.

Looking ahead toward another scheduled drop to 2.5 mg per day that would happen at New Years, I finally threw in the white flag of surrender.  I couldn’t imagine going through worsening of the problems I was having.

White flag 2

I’ve given up!

I’ve given up!

My husband and I conferred at length, and decided to see what would happen of I increased my steroids back to the dose my doctor has always advised me to take during minor flares: ten milligrams.  So the next day, on Monday morning, I did just that.  After only a couple of hours, I started feeling like a new person: clear-headed, able to work, and able to get on with my day and life in general.

I continued the same dose for a couple of days, and felt like my old self again. Then, I dropped one milligram daily until reaching 7 mg.  So far, so good.  The flare symptoms and CNS issues resolved and stayed quiet.

Since 7 mg of prednisone is a normal amount produced by a “working” adrenal gland, I intend to stay at this level until my next doctor appointment.  But, that next appointment will be with a new doctor.

Next, a new doctor

Next, a new doctor

After twenty years with the same rheumatologist, I am going to see a new one. We decided, since reaching this point of serious disagreement with his medical advice, and thoughtfully determining not to follow it, it is senseless to continue to be his patient.

Although after twenty years I find it hard to want to leave a doctor who knows me so well, it is time to do this thing.  He is older than me, he is not on my insurance, and perhaps it is time to start with a new doctor to see me through my retirement years.

A few months ago, I met another rheumatologist who spoke at a Lupus Foundation of America symposium we set up for Phoenix lupus patients.  I spoke with this intelligent young doctor at length afterward, and while we chatted I asked her about a second opinion on my treatment plan, and shared with her my misgivings about how things were going on my steroid withdrawal.

I asked her what she would do in my situation.  I haven’t been able get her response out of my head! She looked me intently in the eyes, saying, “I would never go to a doctor outside my medical plan, I would never see a doctor that required paying out-of-pocket cash at full price for office visits.”

Calling for an appointment with my new doctor

Setting an appointment
with my new doctor

As we exchanged business cards, I discovered that her office was right around the corner from my house, and that she practiced in a large, highly respected rheumatology practice.  We hit it off, communicated well, and shared a strong sense of mutual respect.  I decided right then, she would probably be my next doctor.  A few days ago, I finally pulled out her card and called to set an appointment.

While I had hoped to be writing about my attempts to get off prednisone, and to be recounting highs and lows of my successful withdrawal, unfortunately, that’s not the case.  Perhaps, later, with closer cooperation between me and my new doctor, that might be the outcome.  But, not for now.

%d bloggers like this: