One Patient's Positive Perspectives

Posts tagged ‘symptoms’

The brain fog moment and lupus crossed wires

CNS lupus involvement

CNS Lupus strikes unexpectedly

Just when you would like to hope and think it is gone forever and never coming back, lupus brain fog and crossed wires show up again, unexpectedly.  It is not that the head is not on straight, it is just that sometimes, just for a moment, it is unclear what week or day you are in, or what subject you just wrote an email about.  Recently, several similar projects overlapped in the same time and space, and it was a sure prescription for a mental mishap!  While finishing up interviews for one vacant job, new applications just started coming in for another.

Here is where the confusion starts.  Keeping the two recruitments straight was a mental quagmire.  The call was placed just a little too early on a Monday morning for the normal state of my “lupus brain,” and a group of questions were asked and answered as I spoke with an applicant’s work reference.  All throughout the call, it seemed odd how much all the answers were describing skills and abilities that fit the other open job, perfectly!

Too early on Monday

Returning to my office to re-do the form

After filling out the title of the position on the required form for Human Resources and filling in answers in the comment areas, I signed it.  It was then I realized things had gotten a little murky.

Walking over to my assistant’s desk, I began explaining how unusual it was that the applicant seemed to fit the other position, but not the one she had applied for.  My assistant looked up at me with a very quizzical look, explaining that the answers fit the position that applicant was seeking!


Crossed wires!

The sudden realization hung heavily in the awkward moment, as humility stepped forward, compelled to admit to a mental crossed wire.  Reclaiming the form, and returning to my office to redo it, the correct job title and all the answers were copied into a new version.  Now, the applicant seemed to fit the job perfectly, and even qualified for a second interview.

It is amazing what a little central nervous system lupus can do when you least expect it!  It might even inadvertently alter the course of someone’s career, if not kept in check by a good assistant, not afraid to say, “what are you thinking?” when it is needed most!  A good assistant is hard to come by, and no, you cannot have mine!


Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

Lupus and the grief experience, the next chapter


Quiet moments to read for pleasure

Grieving can be intentional.  After the loss of my father in early July, I have made a point to find a few quiet moments to sit and read a book for pleasure, crochet a small project, go through family pictures, make calls and send emails to family.  I also shed a few tears while reading and re-reading the sympathy cards from family and friends while mulling over the love and concern of dear people who care so much about my loss.

A new idea

Unexpectedly, a few mornings ago an idea appeared: it was time to change things a bit.  Walking through the house into the bedroom, and briefly reminiscing, I knew just what I needed to do.

Tucked away in the back of the dresser drawer for fifteen years was a bundle of cards carefully tied together with a black ribbon.  Setting down my coffee on the dresser, and the stack of recently received sympathy cards that I had just read through, the next thing to do was instinctive. Reaching between layers of folded comfy sleep wear and the last nightgown my mother had given me years ago for Christmas, my hand found the packet in the back of the drawer.  It was tucked away ever since my mom had died unexpectedly in 1997.  Tears welled suddenly fresh in my eyes and heart as I retrieved it.


Re-reading sympathy cards, now mourning loss of both parents

For the next hour, both sets of cards sat on my lap and had my undivided focus. Without regard for schedule or other obligations, life stopped briefly for mourning and letting my soul cry again.  I re-read sympathy cards from friends and family that had comforted me when I faced intense grief years ago, realizing that some of the friends who sent them were now gone, too.  Bittersweet memories of love and sorrow, void and loss, flooded back while slowing to intentionally mourn my mother once again.  Tears soon turned to prayers of gratefulness for the depth of fellowship and concern shown by these dear concerned people.  Friends, church members, co-workers and distant family had all sent their messages and had prayed for me then, and were expressing similar love and care now with my dad’s passing.

Savoring the beautiful cards and reading each kind personal note, my sorrows fused together as the loss of both of my parents was somehow mingled.  They had loved each other so much in their lives, and so I wanted to love them and mourn the loss of the beautiful thing that was “them” together again, too.  But, I knew it was now time for me to put away the sympathy cards, at least for now, and take one more step forward in my process of mourning. Time to expand my boundaries a little and shift my focus a little more away from my pain and loss, and back out toward the waiting needs of others around me.

Thoughtfully re-tying the black ribbon around the old cards, I pulled out a new ribbon from my sewing cabinet and tied it in a similar fashion to bundle the new cards.  Both precious sets of cards were tucked together back into the place where the old ones had been nestled for years.  They rest now in the back of my dresser drawer, waiting like a memory preciously held but hidden away in a personal, secret place, waiting to be retrieved once in a while and ponder again when needed.

Messages in the cards help me capture the thoughts of love for my parents and the warm care of those who sorrowed with me at their now joined loss.

Allowing space and time to grieve

So, although they both are gone, there still rests a quiet memorial in my heart for them, and a little simple reminder of love and care tucked away to revisit when my heart once again will remember and ache.

By frank wouters from antwerpen, belgium (Flickr) [CC-BY-2.0 (], via Wikimedia Commons
Photo courtesy of Frank Wouters, Antwerpen, Belgium

There they will be, always waiting for me to pull out and read, ponder and be encouraged by the love poured out in sympathy from those who cared so much and encouraged me in my sorrow.  There may always be a time when writing, committees, and even important work responsibilities can wait.

A hurting lupus patient needs to remember to re-prioritize when grief or other heavy burdens of life arrive, acknowledge the grief, and allow themselves time and space to cry.  We should let the grief be an important interruption to the normal flow of our life, and let the need to grieve take its necessary place.  Taking time to allow ourselves to grieve is an important part of taking care of our lupus.

My grieving will continue for a while, and will likely take many more months to diminish intensity of the loss.  Mourning is a potent, normal human feeling to be experienced, but not squelched nor repressed.  If not permitted, the pain of grief will still find its way out somehow.

The place of faith in grief

thankful moments

In grief, remember God

When I lost my mother many  years ago, within weeks my lupus progressed for the first time into an organ-threatening, more serious level of activity and almost killed me.  Although more powerful drugs and an aggressive treatment program has kept it under reasonable control over the last fifteen years, my lupus has never completely digressed to what it was before.  The stress of grieving is a normal part of the human experience, and I believe God can use it to draw our attention to Him, and to help us focus on the importance of seeing our own mortality accurately.

Although my lupus became more severe during my earlier grief, all was not negative.  I grew and gained wisdom from my experience of grief, and I learned to see my mortality in a new light.  Perhaps it made me more aware of the eternal aspects of life, and more focused on my relationship with my Creator.  Sensing our own mortality can foster a strong and humbling sense of worship, especially when we see our own frailty in contrast to our Creator.

Lupus still could have become serious at that time in my life, anyway, even if I had not been going through grief.  Lupus is unpredictable, and the most important thing I can remember about the changes in my lupus severity, no matter what the cause, is that whether I am sick or I am or more healthy, God can help me through the changes in my health.  He can enable me to face and accept the limitations of my disease with His strength, while borrowing His joy on the days my own escapes me.  He is there, upholding me right in the middle of the hard days, too.

Now, I can plan to go forward through this new grief experience without my faith wavering too much, and without excessive fear of future lupus changes I cannot control.  I will try to deal with my grief as honestly as possible, while doing some of the important things I can control, like taking care of myself physically to help optimize my strength.

The impact and season of grief

We must always remember that the only predictable thing about Lupus is that it is unpredictable, and sometimes there is absolutely nothing we do can keep it from getting worse.

To everything there is a season... a time to mourn...

To everything there is a season… a time to mourn…

Even mourning that is “well done” can still be an intense stress that triggers and exacerbates any chronic illness, even Lupus.  We should never feel that if we see increased lupus activity in response to life stresses, we somehow didn’t “healthfully” grieve or cope with new stressful chapter in our life!

Perhaps a flare of symptoms is inevitable, despite what we might try to do to prevent it.  We might just be experiencing the normal logical result of the circumstance we are facing.  The stress of loss of a loved-one or any other major life stress always has potential for triggering a flare of lupus symptoms, or triggering other health problems in any person, healthy or not, due to the natural physical influence this type of normal human stressful experience has on our body and health.

But, now, in the midst of my grief, any attention I give to making sure I am mourning well just might help me stay a little more well, too.  God Himself makes a point of instructing us about grief in the Hebrew poetical scriptures, reminding us that, “to everything there is a season,” and specifically that among the seasons of life there is clearly “a time to mourn.”  So, for this next season or two in my lupus adventure, mourn I will, for mourn I must!

LFA Lupus Awareness Month Action Ideas #4, Dear Lupus!

67cbc18b28c77fe5b8_lsm6bxlesWhile talking on Skype a few weeks ago with a friend at the Lupus Foundation of America (LFA) office in Washington, D.C., she explained about the LFA’s upcoming lupus awareness campaign for this month. There was a subtle suggestion and very personalized challenge that also emerged from that conversation.

Now, here we are smack, dab, in the middle of May and the response to that challenge is still very much on the drawing board.  Hoping that by the time we reached Lupus Awareness Month Action Item No. 4, a post about it would include a link to my contribution to Dear Lupus, it isn’t ready yet.

Alas, my response has proven to take a little more thought than first anticipated.  Knowing that me and my family are serious musicians, Kris suggested that perhaps a “creative” Dear Lupus video from me might be  interesting.

three bfs

What would you tell Lupus?

It may sound pretty simple and straightforward, but this challenge is taking some doing to complete!  Life and lupus have kept me busy, and time for creative focus has been at a premium.

While the response to my friend’s challenge is still in the works, it will perhaps successfully tie together my music and my message to “Dear Lupus.”  What will that video look (and sound) like, I am not sure yet.  To be sure, I will share it here, as well as at the LFA site, Dear Lupus.

What would you say to Lupus if it were standing in front of you, now?  Why don’t you sit down with your computer, laptop, tablet, cell phone or whatever, and work on your own creative “Dear Lupus” message to share, too?

Lupus and the first new rheumatologist appointment

bf deep purple

positive – reassuring – affirming

In three words, my first appointment with my new rheumatologist was positive, reassuring and affirming.  After twenty years with my previous rheumatologist, changing doctors was not a lightly considered move.  I am generally a very loyal patient, and honestly, it was a bit scary to think about changing.  But, it was time to make the change!

Lucy Advisor

much prayer and advice

Much prayer, consideration and soliciting of comments from my circle of personal advisors went into this decision.  Thankful for many around me who listened and opined during recent weeks, my final choice to make the move was based on multi-faceted health, economic and philosophy-of-practice concerns.  Any apprehension I felt before making the change, vaporized the moment my new doctor stepped into the examining room with a smile.

“Hello, glad to see you again,” was her greeting, as I shook her outstretched hand and reciprocated the gesture.  We had a brief first exchange acknowledging the thread of our first social conversation outside the clinical setting.  Confirming my intent to opt for completely transferring my care to her, and not just getting a second opinion, we launched into her review of my medical and treatment history.


diagnostic tests

It was clear she was extremely “present” in the conversation, intuitive, highly knowledgeable, and gave me a strong impression of her competence and confidence.  Without seeming to be in a great hurry, she efficiently completed a thorough history and head-to-toe physical exam, while fleshing out important details forming her composite picture of my present condition.  She determined she would continue my current treatment plan, at least at first, and ordered several diagnostic tests to help establish the baseline for my continuing care.

We discussed my recent failed attempt at steroid withdrawal, and the results of my personal “crash and burn” that occurred about ten days before Christmas.  I was relieved that she didn’t seem troubled at all that I had felt the need to self-medicate to handle the crisis, and understood my concerns about preventing a repeat of the botched process.  She concurred with keeping my daily prednisone dose at 7 mg, and commented that “it is not at all unusual for many lupus patients to stay on steroids indefinitely.”

All but one of my other current medications, including plaquenil and Benlysta infusions were also continued.  We discussed the fact that I have never taken Cytoxan or Cellcept, and it seemed she was intrigued about that not having been used in the past.


establish baseline levels

My new doctor went on to explain to me that she doesn’t ordinarily recommend attempting steroid withdrawal in the winter months, the season when most lupus patients tend to flare.  She made me feel the approach I took to handling my pre-Christmas crash, burn out and flare was just fine.  I was glad for the affirmation of my judgment, while voicing my commitment to medication accountability to her.

Walking out to my car, sunshine gently warmed my shoulders, as body and mind released into a deep sigh.  I felt the affirmation that I had absolutely made the right decision.  Driving away in my little PT Cruiser with a smile, I was glad.  Apprehension of the unknown, and the reluctance to face a major change was behind me, with foundations in place for a healthy patient-doctor relationship ahead.


the right choice

Now, after having placed myself under the care of a new, highly knowledgeable specialist, a great sense of peace and relief followed the important first appointment.

It was indeed the right choice!

Lupus adventures navigating a new doctor’s forms!

Filling out new patient forms

Filling out new patient forms

Every person with a chronic medical condition, like lupus, has done this time after time.  Each time we face the adventure of seeing a new doctor or medical provider, we do it all over again.  I cannot help but wonder what it would be like to fill out forms for a new doctor, if only.  If only I were a normal person, without lupus! Perhaps that would be the ideal new patient experience.  But then, perhaps I wouldn’t be needing to do it at all.

Follow along with me as I wish I could just fill out the form for my healthier alter-ego twin sister.

If it were my healthier twin…

Returning empty handed

Returning empty-handed

First, IF I were my healthier twin, it might be possible I have been to this doctor before.  It has been such a long time, I can’t  remember when or if it was, and so I ask the receptionist.  “I think I have seen this doctor, can you remember when I was here last?”  If I did, the year escapes me!  I insist, “I really think I have been here before,” but because I have been away and healthy so long, the receptionist hands me a clipboard.  She asks, “since this IS your first visit, would you please fill out all the forms, please, and bring them back when you finish?”  My healthier self continues to protest, ” I think I saw Dr. Smith a long time ago,” so, she relents, and heads off to search her files for my chart.

While I stand there, holding the clip board and waiting, I contemplate that it has been so long ago, the young receptionist was probably in kindergarten, she couldn’t possibly remember me.  Reason whispers in my ear, “any old records the doctor had about me were probably destroyed long ago.”  Returning empty-handed, she announces politely, “IF you had a chart, we cannot find it, SO, we really do need you to humor us and fill out all the forms all over again.  We will have to make you a new chart.”

Nope, it’s really me after all…

Now, since I am ME and not my mythical healthier counterpart, I really AM a new patient.  However, I notice she already has a large file on me in her hands, brand spanking new, presumably holding unread fresh photocopies of medical records and diagnostic reports sent over from all my other doctors, labs and radiologists.  Although she surely has my complete medical history in the shiny new file, she STILL insists, “please fill out all the forms.”

So, still holding the clipboard and pen in my hands, I sit down to begin working on the first question, “Describe briefly your present symptoms.”


Describe your symptoms...

Describe your symptoms…

IF I were my healthy twin, I would fill in something like, “sore throat.”  But, since I am ME, and not healthier HER, instead, I panic!  There are only five lines to write the answer on.  How small can I print to get the most important things in that space?  What should I leave out, what should I include?  Should I limit my answer to just the issues related to this doctor’s specialty, or should I go for the grossly “TMI – too much information” answer?  Should I list the diagnostic criteria, or just try to sound like a novice patient and graphically describe what each of my lupus symptoms looks like?

I suppose to myself that “normal” patients just answer briefly, like my healthier “twin” would have, “sore thumb” or “sore ankle,” or even a much longer healthy persons’ detailed answer, such as “stubbed my big toe last week and it still hurts, so I think I have arthritis.”

Next question, “date symptoms began.”  I just put in “childhood” since I cannot begin to remember what early age I was when the first signs of lupus started.  I ponder, “how young was I when the childhood arthritis, stiff knees, swollen knuckles, mouth ulcers, fatigue and facial rashes all began?”  Perhaps my healthy alter-ego could reply, “two weekends ago,” or something else simple and current, but not me.  This question takes some contemplation and memory jarring to complete.  I keep hoping in vain that the form will get easier after I answer this question.


The inevitable request…

Medical History

Then, the inevitable request, “list names of previous doctors you have seen for this or similar conditions” I hear myself talking outloud in disbelief to myself, “Really, only two blank spaces?” I decide to work backward chronologically until the space is full, wondering, “do most people just say, “none?”

Next, there are several detailed sections for past personal medical history, rheumatologic (arthritis) history, previous operations, and the obligatory family health history.  This time, I am glad to see that there are at least twelve lines for medications, grateful I will only have to double up on some of the lines.  If I write small, I think can probably list all my current prescriptions in that space.  Oh, no, the second column asks for doses, strength, how long I have taken each medication, and how much they help, “a lot, some, not at all, and not sure.”  I decided to guess a little for medications I have taken so long that I don’t even think about the dose any longer or remember when I started taking them.

My date guessing centers around trying to remember the major sequences of milestone health events in connection to which house I lived in, the births of my children, their ages when we moved, their graduation from high school, marriages and when certain lupus flares and major changes in treatment happened, and dates of major accidents, hospitalizations and surgeries.  This is not an exact science, but I am giving it my all out best to be as correct as possible.  Somewhere in the middle of all the guessing, I wonder if the exact answers even matter to this doctor.  Are estimates good enough?  Probably!



Checklist of past medications

Then comes the list of past medications.  I am very relieved to see that the rheumatologist has given some thoughtful courtesy into the design of the form, listing forty common rheumatology drugs, so I check off about 1/3 of them.  I realize there are many that I have completely forgotten about until now, ones that I have taken in my seemingly ancient treatment history.  It is getting hard to remember how long ago I took some of the drugs, so I find myself guessing, hoping again that my new doctor is not big on exact details.  Just like studying history in school, I like the idea that the concepts are important, not the exact dates!

I look up at the clock and realize I have already been filling out the forms for over twenty minutes.  My appointment is scheduled for ten minutes from now, and I have three more pages to fill out.  I can see this will take a while!  I can imagine I will still be working on finishing these forms while I am waiting in the examining room.  I remember the receptionist had told me to arrive a few minutes early, and now am chuckling to myself she should have said a couple of hours!

I check  off the boxes for eight of the twenty-four past conditions I have had, and list my six previous surgeries, one transfusion and one other serious injury.  Then after all the histories, is almost a whole page about medications, present and past.

Lifestyle, exercise, more details…

Lifestyle, exercise & details

Then,  a few dreaded lifestyle sections asking about special diets, regular exercise habits, social history, home conditions, education and employment history.  I find myself amused at the level of detail asked in these sections, wondering if I should make these up for the fun of it.  Does the doctor really care if I was unwise enough to smoke twice a day between ages twelve and fourteen?  My integrity weighs in and I tell the truth, answering for the year “early teens.”  I realized I take all these questions much more seriously than any normal person would or should, but then, that’s the real me with the pen in my hands, not my healthier “wanna be.”

What are they really asking for?

What answer do they really want?

A last, I get to the last page!  I am staring at a full four column sheet of categorized check boxes, listing seemingly every possible health symptom or malady, grouped by labeled categories for each bodily system.  It seems like I answered this a couple of pages earlier, but since there is a longer list to choose from here, there must be a different reason for this question.

The instructions say to “mark any of those problems which apply to you.”  Does that mean that have EVER applied to me, RECENTLY applied to me, USUALLY apply to me, or should I really check off all the things that have happened at any time in the broad expanse of my entire health landscape?

I decide to just check the boxes that I have seen a doctor about, or that have clearly happened more than once.  I am afraid if I pull out the stops, and tell every last detail, the first impression my new doctor will have will be to pull out a big red stamp and mark the outside of my new medical chart in bright, bold, capital letters, “hypochondriac.”  I don’t want this new doctor to put me in the same category as the first doctor who actually called me THAT about five years before lupus was finally diagnosed!

The doctor will see you now

The doctor will see you now!

The doctor will see you now!

Soon, I have completed and reviewed my answers, and signed the forms and handed the clip board back to the receptionist.  I feel just like I have finished a mid-term exam in college!

She says politely, the doctor will be with you shortly.  I muse to myself that the forms took almost an hour, and that I will probably spend less time than that with my new doctor today.  This encounter, will be an adventure, as I open this first page in the new relationship with my new rheumatologist.  I hope the relationship will develop with effective communication, with a large dose of mutual respect.

The smiling receptionist returns through an open door into the lobby, announcing triumphantly, “the doctor will see you now.”

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.

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