Lupus, Benlysta and a little browsing with brunch

This morning was a repeat of many Saturday breakfast brunch rituals.  Today it was omelets, bacon, toast, homemade plum jam,  strawberries and bananas with coffee.  I really enjoy sleeping through half the morning each Saturday, but then I get up mid morning and usually make a hot brunch for everyone in the house.

Before our daughter and son-in-law came to live with us, breakfasts usually just included my husband and me, but these days, it includes them as well.  We often enjoy a chatty social time during the cooking, and at last the cook (me) gets the last, best, fluffiest omelet — when the skillet is finally well seasoned and everyone else is fed.  So, now I sit down to enjoy the fruits of my cooking and a little browsing with brunch.

Benlysta Twenty-Two Month Update

It is time for an update on my Benlysta treatments, since yesterday was month twenty-two in my treatment.  However, the last infusion almost didn’t happen, after nearly sleeping the day away in lupus exhaustion and fatigue.

Yesterday began with a start, after awaking from a dead sleep in the quiet house.  It didn’t seem like morning at all!  What time was is?  Groping through fogginess to find a watch on the bedside table from the night before, the startling realization shook me that it was 12:15 p.m.  The morning was gone and it was lunch time,  and sudden panic and urgency swept over me, while a feeble surging trickle of adrenaline was coaxing my body and brain into wimpy “fight or flight” mode.

Panic and Rush to Get Ready

With the realization that my Benlysta infusion appointment was scheduled for 1:00 p.m., only forty-five minutes from my waking moment, I jumped out of bed, stumbling as I faltered to get the waiting my sandals on my feet.  I was still dizzy with sleep.  A look in the mirror didn’t help my hurry.  My night sweats had turned my wavy hair into a rat’s nest of randomly angled mess, and there was no remedy but the shower!  Hurrying, with tooth-brush in hand and  mad splashing of water and shampoo,  within a couple of minutes I was out of the shower and drying.

It crossed my mind while holding my towel, that I could easily have slept right through the entire day — completely missing my infusion.  I was grateful for whatever had shaken me out of slumber, thinking, “thank you Lord!”

I was finally clean, dry and almost presentable, but still desperately needed clothes!

Quickly grabbing some necessary under-things, shorts and a favorite shirt, I dashed through a cursory grooming and took my morning meds with a splash of orange juice.  Grabbing my purse, I jumped in the car and realized my heart was racing with urgency.  It was now 12:55 and I was very late, but still determined.

Late, but determined

I pondered that we had postponed my Benlysta infusion last week, so that we could travel out-of-town to visit family.  I didn’t want to postpone the Benlysta another week!  My joints were already reacting to the resurgence of those little nasty Blys proteins that confuse my wayward B-cells.  I really wanted Benlysta soon to blast the increasing Blys population and quiet my Lupus back down again.

Calling up the hospital cancer infusion center while I headed for the freeway, the gal put me on hold for over ten minutes.  By the time we finally spoke, I was almost halfway there.  She was kind about my tardiness and told me to keep on driving.  Arriving twenty minutes late, they quickly processed me and a nurse promptly whisked me back to the infusion room.  Soon the powerful biologic drug was dripping into my vein and on its way into my system to once again fight my lupus.

Update on Benlysta’s Effectiveness

The Benlysta does its thing well, and has been greatly moderating my lupus.  My CNS lupus involvement remains subdued and quiet, my fatigue is greatly reduced, and my liver has remained symptom-free.  Minor symptoms of lupus — discoid rashes, mouth and nose ulcers, arthritis and bouts of milder fatigue are still present, but my overall physical strength and health are continuing to build up, as the lupus has continued to stay much quieter over a long period.

August will mark my two-year Benlysta treatment anniversary.

Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

Lupus and Benlysta Infusions – After 18 months

18 Months of Benlysta

This afternoon marked the 18th month of Benlysta infusions for my Systemic Lupus.  In August, 2011, I started Benlysta infusions trying to control the rising level of my lupus activity.  A little over a year earlier, I had started coming out of a biologic drug induced five-year near remission.  Today, my lupus is well moderated and has quieted greatly.  Neither my doctor nor I am calling it remission, but “well-controlled” is an apt description of my lupus now.

During the year before  starting Benlysta, my CNS lupus, arthritis and other systemic symptoms had been on the constant rise, things were getting pretty rough, and my ability to continue working was threatened.  My symptoms and cognitive disruption from CNS involvement were worsening.  However, I had long before failed traditional chemotherapy drugs sometimes used for lupus.  My insurance had refused to pay for the biologic drug (Rituxan) that had previously put me into extended remission (the details about Rituxan appeals are best left for another discussion and are mentioned in other earlier posts.)

Before Benlysta…

Two Years Before Benlysta

Two years before starting Benlysta, I had scheduled a trip to the San Francisco Bay Area to visit my dad.  This was the beginning of my journey out of remission and toward Benlysta.

My father had lived alone for almost a dozen years after the sudden passing of my mother.  He had managed pretty well on his own, with a few periodic check-ins and refresher courses from me to reinforce the month-long “Home Economics 101″ training I put him through twelve years earlier.  For years he had managed to live a respectable widower’s existence, fulfilling his personal goal to keep the neighborhood widows at bay.   But, he knew something was wrong and resigned his post as treasurer of the local American Legion chapter because he was suddenly making math errors in his reports.

Sonoma, CA Wine Country

About this time, I had registered to attend a legal conference north of the Bay Area in the Sonoma wine country for two days of educational meetings.  I coordinated plans to spend several days before and after the conference visiting with my dad.  I was helping him make final plans to move to Arizona and put his house on the market, and he had seen a lawyer to set up my role as power-of-attorney for his affairs.  He had fallen a couple of times and he realized the wisdom of being nearer to family.  Little did we know at first that he would soon have the rapid onset of dementia overtaking him, and that the math errors and a couple of falls were just the beginning.

Just before I was supposed to leave for San Francisco, I called my dad about him picking me up at the subway vs. taking a cab to his house.  To my surprise, he seemed nearly catatonic when I spoke with him, drifting in and out of consciousness.  During his few lucid moments, I learned he had fallen again, and had since been sitting in his recliner for at least four days unable to get up.  He had not eaten nor drank anything, and from his description of his symptoms, I correctly deduced he was suffering confusion caused by kidney infection and failure.  He might not have survived had I not called him when I did.  One of my sisters was able to get to him immediately and she oversaw getting him to the hospital.

Two months flying between AZ & CA…

Two Months of Travel

By the time I got to California, he had been hospitalized and was receiving life-saving treatment.   After a week of comprehensive care and testing he received a clear dementia diagnosis.  He would not be allowed to ever return to his home again, and would from then on need around-the-clock oversight and some ongoing nursing support.  He spent the next eight weeks in aggressive physical therapy, learning to help get himself in and out of a wheelchair while regaining enough strength to get around using a walker.  Only then I could put him on a plane to relocate to Arizona.

During those two months commuting between Phoenix and San Francisco I seemed to do fine, traveling back and forth every week to spend three or four days in Arizona alternating with three or four days in California.  I systematically cleaned out and packed up each room in my dad’s house, while meeting with realtors, estate sale shops, lawn care people and scores of doctors.  I also was forced to undergo a crash course in elder law, medicare, social security and pension benefits!

Flying back and forth took some toll on me, but buttressed by intercessory prayer from family and friends, my lupus seemed to stay quiet.  I secured an appropriate place in assisted living facility for dad near my Phoenix home, sold his house, and brought him back to Arizona with me in time for the holidays.

View from Infusion Center

Weariness, Insurance Appeals & Giving Up

The next few months were very rocky and wearisome, as it soon became clear my father would need a higher level of care than assisted living.  After months of middle of the night calls from his caregivers, and 3:00 a.m. trips to his residence facility (because they were unable to quiet and calm his recurring agitation) I was wearing out.   Dad’s worsening dementia and my growing sleep deprivation and increased stress took a big toll on my health.  Although we eventually got him into a wonderful dementia/Alzheimer’s care facility perfect for his needs, and my horrible extended stress about dad’s situation was finally relieved, I paid a great physical price.

I was steadily moving out of the long stretch of remission I had enjoyed for so many years, and was rushing headlong into a major unabated lupus flare.

Surrender

A year after my dad had been first hospitalized in California, my rheumatologist and I starting trying to get insurance approval for Rituxan again, since the clinical trial I had participated in years before had ended.  Before entering that trial years earlier, lupus began attacking my liver and I failed treatment with Methotrexate and with Imuran, a drug commonly used to treat lupus rare cases of lupus liver involvement.  Failure of standard treatments qualified me to take part in the phase three tests of Rituxan for lupus.

Now, in this new post-remission flare, plaquenil and steroids were all I could take for my worsening lupus.  Without Rituxan approval, my doctor and I were in a quandary.

Infusion Center Nurses

What Next?  FDA Approval of Benlysta for Lupus!

I was seriously asking God what to do! Retire with hopes lupus would quiet down?  Go back to liver toxic chemotherapy drugs?

I didn’t have any answers for my worsening lupus, and for the second time in my life, I was at a place where I was considering a medical disability retirement.  I had once before narrowly skirted past this point after Rituxan turned my lupus around for so long.  Since my health insurance refused after several appeals to pay for Rituxan, my doctor and I had finally given up.

Infusion Center

Within a few weeks of our “white flag,” Benlysta, the first new drug for lupus in over 50 years, was approved by the FDA for lupus in March 2011.  Everyone in the lupus community was in an uproar about the great news.

I was quietly hoping that I might be able to get approval for Benlysta, but after the failed year-long battle with underwriters and medical insurance directors over the earlier biologic drug, I was not confident it would be possible.  The published annual price for Benlysta was equal to the drug my insurance had adamantly denied to cover!

After a brief period of discussion with my doctor and an amazingly prompt insurance approval, a mere five months after giving up on Rituxan appeals, I was soon set to begin receiving Benlysta. Now, eighteen months into Benlysta treatments, my health is certainly not perfect – lupus is still there and my lupus neuropathy is somewhat troublesome – but, overall I am clearly healthier than before.

Lupus & Benlysta Now

Lupus & Benlysta Now

My overall stamina and strength in are in a wonderfully better place, and I feel more resilient and energetic!  Thoughts of immediate medical disability retirement are now off the radar screen again, and I am continuing to plan for the rest of my professional future and a normal retirement in a few more years.

I am praising God for His unseen guidance through past events and issues I could not control, and for the unseen future ahead.

Benlysta seems to have no negative side effects except for a few days of extreme fatigue after most of my monthly infusions.  Extra care to prevent infections is always order, but over the past few months I have been exceptionally free of infectious diseases, somehow (by God’s grace!) avoiding strep, influenza and bronchitis, even when its seemed everyone else around me at home, work and church has been sick.  I have been both grateful and amazed!

Note:  If you are interested more information about my experience during the days, weeks and months after Benlysta treatments started, please feel free to check out my posts starting in August 2011 that explore that early part of my Benlysta journey toward better health and quieter lupus on my new Benlysta Journal page.

Benlysta infusion and forgetting something

stopped at the valet

Today was my last Benlysta infusion of the year, and I was the last infusion of the day at the hospital’s cancer infusion center.  As I arrived, I stopped at the valet parking station and headed right in.  In the waiting room the discovery of my Nook tablet battery on empty made me wonder what I would do for the next couple of hours.  Soon, I was distracted into a Christmas mood by noticing wreaths, a Christmas tree and other colorful holiday decorations bringing cheer to the infusion center suite.  The nurses welcomed me with offers of goodies and an invitation to sample the contents of a generous spread of treats.  The nursing staff and a couple of patients had all contributed to a bevy of sweets.

sampled a brownie

As I sampled a soft, gooey brownie filled with walnuts and chocolate chunks, I started craving some coffee, and made a note to myself for next year to bring something to share at my December infusion.  While the staff prepared my IV infusion set up, I dropped my purse and jacket at the infusion chair closest to the coffee station and brewed a single serving of some surprising great coffee, complete with my favorite hazelnut creamer.

vein on top of my hand

Although I have easy to find veins, the nurse had trouble run getting past a valve in the vein on the top of my hand, just as we both remembered she had the same problem in the same spot once before.  She explained that some patients are what she called “valvy” explaining some people have more valves than normal.  The unusually uncomfortable feeling of pressure in the vein had me communicating my discomfort with conviction, as the nurse commented the IV had just blown out.  Pulling the it out, she and I both agreed she would have to toss it and try another IV in a new vein.

got the infusion going

Soon, she got the IV successfully in place and started the Benlysta flowing.  I settled in to read a novel I had borrowed from the book cart on the way in, not sure it was going to be one I would want to read through to its end, but its early pages sufficed to keep me amused, sans my uncharged techie toys. The short one-hour infusion time passed quickly.  Most infusion days, I arrive at around 3:00 p.m. and am usually walking out by 5:30 p.m. or so. Today was no different, except for stopping briefly to exchange Christmas wishes with the nurses and saying goodbye until “next year.”

cash for a tip

The infusion center validates valet parking for patients at the hospital, but I realized as I left the building that I did not have any cash for a tip.  I left my keys with the valet, and let him know I would be right back.  I headed for the main hospital building to find a teller machine.  Just inside, I found one, pulled out some cash and went to break a twenty at the gift shop.  I found a cute battery-powered necklace made of miniature Christmas lights, thinking it would be fun to wear to work next week, and calculated the cost just was enough to break a twenty with plenty of change left for the tip.

Once back in my car, I headed out toward the street, suddenly realizing I had forgotten the file folder I brought with me, expecting a call from my financial adviser.  I remembered I had left it on top of the teller machine!  In a panic, turned my car around at the light and rushed back to the valet station.  Handing my keys back to the valet, I hurriedly explained I had left some very important papers and had to go get them.  I literally ran back through the hospital entrance, glad I was wearing sneakers, and uttered an audible thank you prayer as I spotted my pink file folder atop the teller machine.

Catastrophic in the wrong hands

Inside the file was a receipt, super bill and lab orders from my rheumatologist and my medication list, but more importantly, it also contained my father’s bank statements and the durable power of attorney for handling his business affairs.  This week, I have worked with the bank to restructure some of his maturing investments.  The file contained all dad’s bank account numbers, statements, account balances, addresses, etc.  This information, together with the details in the power of attorney documents, could be catastrophic in the wrong hands, potentially providing everything someone would need to commit bank account takeover fraud.

Slowing down abruptly to stop the pace of my pounding heart, I retrieved the file with a deep sigh, took a couple more intentionally deep breaths, and whispered another short  prayer of thanks.  Instinctively, I clutched the file tightly to my chest as I slowly walked back outside.  Thanking the valet once again, I was back in the driver’s seat and finally truly headed home.

lupus and short-term memory deficit

As I pulled away, I noticed my heart was still pounding and grumbled to myself.  I was extremely frustrated that lupus and my short-term memory problems from CNS lupus caused me to forget something so important!  I was also angry at myself for being careless with the file.  At the same time, I was extremely thankful I remembered it in time to prevent financial disaster.

My favorite expression from the famous Charles Schultz cartoon character, Snoopy the dog, was on my lips as I drove toward the freeway, voicing a deep guttural “aarrgh!”

 

CNS Lupus and a little sneaky confusion

Disconcerting!

Central nervous system lupus in a word?  Disconcerting!  When life gets busy and demands get stressful, CNS lupus can sneak up on a patient and catch her off guard with its bag full of antics and embarrassing tricks.    Over the last few weeks, my life became a little out of whack as my husband and I maneuvered around his knee injury, inability to drive and eventual knee surgery to remove a large blood clot.  Life and schedules became very non-routine and my CNS lupus quietly whispered to get my attention and said, “howdy.”

After more than a year of Benlysta infusions, my CNS lupus has been quieted and subdued more than at any time I can remember in the past several years.  It has been a relief to have my memory and problem-solving parts of my brain working generally well, and I can count on it more often to remember things that were a struggle before.  Well, lately has been an exception.  Being stressed, doing lots of extra driving, working weird hours, concern about my husband’s injury and surgery, and forgetting my medications a few times all contributed to some symptoms that caught me off guard.

Left turn lane to nowhere

One time on the way back to the house, I started into a left turn lane on a busy street that didn’t head anywhere I needed to go.  My kids that were with me asked, “mom, WHAT are you doing?  WHERE are you going?”  There was no saving face because the turning lane went nowhere.  It was all too obvious I was confused.

Several activities were going on at our church because of a 30th anniversary celebration, and my friend and I were preparing to sing a couple of duets for a church service and a formal dinner.  After meeting one evening to practice several pieces in our growing repertoire, we decided which song to sing what night, and scheduled our next practice a few days out.  The next morning, and for several more that followed, I could not remember which songs or even which music books we had decided on.

practicing ALL our duets in the car

To thoroughly cover my bases, I popped the ALL the background music CDs for several music books into my car, and for a few days sang along with ALL of our duets as I commuted.  It took me several days of singing and hoping in vain that my memory would clear before I called my dear friend and confessed my massive memory lapse.  My friend, so like a sister, loves and understands the hard issues of my lupus, and in her matter of fact directness, refreshed my memory.  This time, I wrote down dates and times next to the names of the songs in the table of contents of the correct music book.

Forgot the card… twice!

Twice recently, I went out to pick up some amazing sub sandwiches from our favorite local lunch spot, Jersey MIke’s Deli.  My husband all but cherishes his Mike’s “frequent buyer” rewards card, and admonished me to remember to use the card when I bought our subs.  Not once, but twice, I forgot to pull out the reward card.  No more than ten minutes passed between taking everyone’s sub order and standing in front of the deli counter, but both times the thought was wiped clean away until later.  When he asked me about it, I was frustrated at forgetting.  Short-term memory issues from CNS Lupus?  Of course!

Confusing days, names & passwords

The most disturbing issue of all was several instances when I was confused and couldn’t figure out what day it was.  Then, later that day, it bothered me greatly when couldn’t remember my friends’ names or my pharmacy log in name and password.  I even had some moments of difficulty articulating clearly while trying to speak.

Things were subtly getting worse a little at a time, when I was suddenly shaken into action in the middle of happy pleasant busy day by a tidal wave of unexplained deep physical sadness.  This overwhelming emotion was so strong it was like an intruder bursting into the room, and I suddenly felt it physically.  It was an unmistakable sign that my CNS lupus had kicked up into more activity.

This physical “depression” I experience sometimes when my CNS lupus becomes active is a great deal like a sensation of woe that floods over and through me.  It seems totally physical, and is completely detached from my thoughts and feelings.   It is a misfit with where I am at in life and in the middle of an otherwise normal day.  My upbeat brain doesn’t match my suddenly “grieving” body.  It feels like my body is intensely sorrowful, while my inner self is perfectly happy and at ease, even cheerful or joy filled.  Over the years I have learned to recognize this urgent organic cry from my brain and body for help.

diagnosing CNS lupus with treatment

I respond by taking a modest burst of steroids and taper off within a couple of days.  If the physical depression returns, I set a priority appointment with my rheumatologist, who usually ups the steroids by injection or a high long taper off prednisone.  Steroids are the big gun that immediately changes everything.  My rheumatologist says it is possible to diagnose CNS lupus by treating it, because of how quickly it responds to prednisone.

Lupus and Benlysta Infusions – after one year

Phoenix Skyline

Today marks one-year since I first sat in this same infusion center in a Phoenix hospital and began receiving monthly infusions of Benlysta (belimumab) for my lupus.

Looking out the windows I can see the downtown Phoenix skyline in the distance bordered by hazy blue sky above and a green urban forest canopy of mature landscape trees across the base of the clustered skyscrapers.

A range of desert mountains completes the scene, flowing like a wide brown ribbon behind the tall buildings, separating the verdant foreground from the cloudy blue expanse above.  It hardly looks like the desert from this vantage point above the tree tops!  But, don’t be fooled by appearances, the temperature outside was over 100 degrees today.

Benlysta quieted Lupus

Today, as I contemplate the beautiful view outside, I compare the state of my health today with one year ago.  The path of this year-long adventure has taken me to a better place, overall improved health and a measurable restoration of my quality of life.

I sit here grateful for the funds made available to pay for my treatment, since the costs to my insurer for Benlysta infusions in the hospital setting (the administration site that my insurance requires) are massive.  The total one year cost is in the neighborhood of double my annual salary!

Assessing my Lupus

So, as the Benlysta drips into my vein, I assess the state of my lupus.  A year ago I would have assessed my “healthiness” at about 50% and now I would rate it at about 75% to 80%.

Today, I am clear-headed with central nervous system involvement quiet and under good control, significantly reduced arthritis inflammation, feeling pretty decent.  I am even having a hard time remembering the last time I had nasal or mouth ulcers from my lupus. It has been a long time since I suffered with deep bone ache in my arms and legs that lasted for more than one day.  My lupus neuropathy was flaring a month ago, but has quieted back down in the past few weeks.

Better health emerged

Benlysta slowly and methodically made a real difference, like the almost imperceptible growth of the beautiful flowers in my garden, that start as tiny seedlings and slowly develop into a blooming swath of beauty. So too, my lupus has quieted and better health has emerged in the place of rampant symptoms, malaise, fatigue and pain. What a great improvement one year of effective treatment has made.

Lupus and Benlysta – After 11 months and 12 infusions it is a milder, gentler monster

 

In a hurry and in brain fog

This week I passed the milestone of 11 months since starting Benlysta infusions for my lupus.  On Monday this week, I had my 13th infusion.  I woke up just a little over one hour before I was supposed to be downtown at the hospital.  Ironically, the day of my infusion was probably the groggiest, foggiest morning I experienced all month long, so I was grateful my daughter had volunteered to drive me there.  If not for her help, I would have had to cancel my infusion due to the intensity of my morning CNS lupus symptoms.

I didn’t have time to get ready for work before going to the infusion, especially after turning off my alarm and falling back asleep for an extra hour.  So, we left shortly after I got up, and my daughter expertly navigated Arizona’s heaviest freeway heading south in the traffic of a sluggishly moving river of morning commuters.  Sipping my second cup of wake-me-up coffee and feeling nearly “brain-dead,” I was especially glad to be a passenger, and that I was not me behind the wheel at 7:00 a.m. that morning!  The thought of me driving that early is a scary proposition!  We arrived at the hospital’s outpatient infusion center with a few minutes to spare.

sluggish river of morning commuters

My daughter hung around to keep me company for the next couple of hours, but we only spoke occasionally as Benlysta trickled into a vein in my right arm.  She was engrossed reading one of her two-per-day books as I played Angry Birds on my Nook Tablet.  Somehow shooting an endless string of little birdie missiles from left to right at grinning pigs on a digital screen was very therapeutic.  What amusement, what mindless occupation, what trivial activity!  But, it kept me occupied through my early cognitively challenged morning.

at work lupus fog had cleared

Later in the day at work, the lupus fog cleared and  my mind  functioned much more clearly: filled with thoughts of legal ethics opinions, employee development recommendations, cash-handling policy making decisions and recommendations for contract terms for our outside counsel law firms.  But, right then, in the peaceful hour in the infusion chair, I enjoyed the effortless, untaxing, carelessness of my handheld computer game.  Such simple bliss!  By the time we got back home, I had time to get ready and was finally clear-headed enough to drive myself to what ended up being a pretty normal work day.

I never seem to suffer ill effects from the Benlysta infusions themselves.  After nearly one year of infusions, the only side effects I have repeatedly experienced are tiredness and extreme exhaustion for a few days after some of the infusions.  After the first two infusions I had a couple of sharp quickly passing “zinger” headaches, but they never returned.  Also, in the first few months I had several sinus and bronchitis infections complicating my asthma.  But now, after the last few infusions, there have been none of these side effects except post infusion fatigue.

Has Benlysta mad a difference?

Have the Benlysta infusions made a difference?  I am measurably better now than I was before I started them a year ago in July, and can really sense a change.  Comparing my health then and now, I would say that using scale where 100% is totally healthy and 0% is hospitalized, I was at 50% a year ago just before starting Benlysta, and now after almost one year of infusions I am at 75-85% most days.  I still have up and down days, but the bad days are milder and less frequent.  The days when I feel as sick as before Benlysta are rare.

Lupus is now milder & gentler

During the past year, I have been able to successfully get my prednisone dose back down to 5 mg per day, and my rheumatologist is really pleased with this outcome.  For over a year before Benlysta, we could not successfully get my prednisone below 10 mg, and then it was only briefly dropped between repeated bursts back up to tapers from 20 or 30 mg.  It has been several months now since I have had to do a prednisone burst, and I have enjoyed the increased stability and quietness of my lupus.

Benlysta has not made fast changes, but rather slow, steady modest changes that are improving my lupus over time.  Benlysta is not a cure, lupus is still there, but after 11 months and 12 infusions, it is a milder, gentler monster than before!

 

Lupus and Benlysta – after 10 months & infusion #12

12th Benlysta Infusion

This week I received my 12th Benlysta infusion, and am glad to report moderate success with it as a contributor to controlling my lupus.   While I had keenly anticipated it might be as miraculous as the Rituxan (Rituximab) infusions I received several years ago, it has fallen far short of that hope.  However, the drug I received during the phase three clinical trials of Rituximab proved to have remarkable effectiveness for some lupus patients, but treatment with it presented grave danger for others.

While I entered a five-year dramatic near remission of my lupus after receiving just two infusions of Rituximab, a few unfortunate patients in the clinical trials lost their lives to a fatal brain infections.  A normally harmless common childhood virus was re-awakened in some of the clinical trial patients, causing their untimely deaths.  The number of these deaths was compared to the total number of patients in the trial, and it was clear the fatalities were too many to be a coincidence.

Benefits v. Risks

Benefits of effective drugs may not outweigh the risks

The Rituximab deaths demonstrated that lupus patients seemed to have too much risk to take the drug, and the excitement about Rituximab as a treatment for lupus cooled off quickly.  The FDA did not approve it and many insurance companies will not pay for Rituximab to treat Lupus.  Although Rituximab is FDA approved and widely used with outstanding results for rheumatoid arthritis, certain cancers and many other auto-immune diseases, Rituximab proved much too risky for lupus patients.  The potential benefits of Rituximab for Lupus clearly did not outweigh the great risks.

I also thank God for many answered prayers and His gracious protection through the clinical trial, and that I was spared from developing a horrible infection.  I am thankful for the many people who prayed for me during the time I was receiving Rituximab* infusions, knowing there were possible great risks, and even a remote possibility of death.  Although I was more concerned about a possible allergic reaction, there was an even greater risk from infection revealed during the trial.

So, I now continue to take Belimumab infusions, and do enjoy its moderate help with controlling my lupus. Still,  I cannot help but wonder how I might feel right now if Rituximab had been safer, and if it were still available to me.  One of the important issues patients must realize when they take part in clinical trials, is that, although they may feel great in response to new drugs being investigated, the medication being studied may not continue to be available.  If access to drugs taken in a clinical trial stops and they are not approved by the FDA, then participants must be ready to accept a return to using less effective drugs and a possible return to more active lupus.

safe “okay” is better that dangerous miracles

“Okay” with safe drugs is better than dangerous miracles

For me there is some clear amount of disappointment to cope with after having received both Rituximab and Belimumab infusions.  But, still I am very thankful for the five years of dramatically improved health that I enjoyed after Rituximab.  I am also very thankful to for the slower, but clearly modest improvement of my lupus after ten months of Belimumab infusions.

Although after almost one year of Belimumab I hoped to feel absolutely wonderful, instead have to describe how I feel today as just “okay.”  Okay is better than where I was  a year ago, and that is still very important progress in treating my lupus.  It is not miraculous, like Rituximab seemed to me, but it gives acceptable improvement.  I’ll take it and thank God daily for the ability to receive this helpful and safer FDA-approved treatment.

opportunity to make a difference

Participation in clinical trials makes a difference

It is also very important to me to know that my participation in a clinical trial contributed to the greater process of helping find new drugs that are safe and effective for treating lupus.  Even though the drug I took did not ultimately become a help to future lupus patients, the clinical trial helped in other ways.  If not for patients like me, being willing to put their hopes and health at some level of risk, new drugs would never be found for lupus.

The safest trials to take part in are phase three clinical trials, when medicines are tested that have already proven effective in phase one and phase two trials.  The phase three trials help verify appropriate doses, and measure how effective the drugs are in treating a specific disease.  Phase 3 trials help doctors know 1) how much medicine to give, 2) how often to give it, and 3) how well the medicine works. Progress in finding these new drugs would never be reached without patients and their doctors being willing to participate in the lupus adventure and risks of joining a clinical trial.  I am still grateful for that opportunity to make a difference.

*[Errata:  The incorrect word "Benlysta" was deleted and correct word "Rituximab" was inserted after publishing.]

Other posts about Rituxan and Benlysta:

Lupus Rituxan treatment denied by insurance company
Pending FDA approval of new lupus drug Benlysta
Lupus, and Benlysta in my future…
Benlysta Infusions for Lupus – Day One
Benlysta infusions for lupus – Day 15
Benlysta Infusions for Lupus – Day 30
Benlysta Infusions for Lupus – Day 60
Benlysta Infusions for Lupus – Day 90 – Thanksgiving
Lupus and Benlysta after 21 weeks
Lupus post-infusion infection, steroids and the E.B. effect
Benlysta & Rituxan infusions for Lupus: the tortoise and the hare
Lupus and Benlysta – 25 Weeks and Infusion #8
Lupus, Benlysta infusions and almost glorious mornings
Lupus and postponing a Benlysta infusion
Lupus, singing and a visiting hummingbird
Lupus and Benlysta after 7 months – Infusion #9
Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus
Diagnosis and Treatment of Lupus: Fact #12 – Lupus requires multiple medicines!
Prognosis and Hope: Lupus Fact #28 – Normal life span expected with current treatment standards
Prognosis and Hope: Lupus Fact #31 – Lupus research lengthens lives!

Prognosis and Hope: Lupus Fact #28 – Normal life span expected with current treatment standards

Prognosis and Hope: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.  This puts about 10 to 20 percent of in a somewhat different minority group, but with proper treatment these people can expect to live long, full productive lives, too.

Medication standards for mild/moderate lupus

The prevailing standard of care for lupus patients in the first, low-risk group includes some baseline medications, specific standard diagnostic tests and common sense advice to lifestyle changes.  For the first half of the years since diagnosed with lupus, my treatments were also limited to the following baseline therapies.

Three basic drug standards for mild/moderate lupus

NSAIDs

First, anti-inflammatory and analgesic medications are the most common drugs used to treat lupus, and sometimes the only drug patients need.  Inflammatory symptoms like arthritis and pleurisy respond well to these standard drugs.  Commonly prescribed analgesic and anti-inflammatory drugs include aspirin, acetaminophen, and non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, naproxen, indomethacin, nabumetone and celecoxib.  Some of these drugs are hard on the stomach, or can created problems with a patient’s kidney or liver function and need routine follow-up and blood tests.  My NSAID  of choice has always been sulindac, because it was just about the only one I could tolerate due to my of inability to take all the other common NSAIDs.

Corticosteroids

Second, the Lupus Foundation of America (LFA) discusses the next class of drugs, corticosteroids used to treat flares in mild to moderate lupus cases, as well as in the most severe cases.

“Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.”

“Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.”

steroids and cataracts

Long-term steroid use has many potentially harmful effects on a patient, and can lead to complications such as adrenal insufficiency, bone loss, cataracts, and other cholesterol related circulation problems.  My early years of moderate symptoms included times of flare that required the extra power of an occasional burst of steroids to intervene and shut down active lupus.  After many years that followed of daily low dose steroid use, my eyes are beginning to show the beginnings of cataracts, but I have not yet experienced other steroid-related problems.

Antimalarials

Third, the LFA also discusses antimalarial drugs and their cornerstone place in the treatment of most lupus patients:

“Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing auto antibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.”

“The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.”

“Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.”

plaquenil is baseline lupus & RA drug

This third drug, Plaquenil, has been one of my a daily lupus medications for the last twenty-years.  It was the first drug my rheumatologist prescribed for my lupus, and even now, I take it every morning and evening in times of remission and flare.  In the beginning, it took several months for me to see changes they made to limiting my lupus rashes, mouth ulcers and overall disease activity.

Plaquenil is also the first line drug of choice for patients with rheumatoid arthritis (RA), and I have a friend with RA who developed severe rashes while taking plaquenil.  Her inability to take this medication has made the treatment and management of her RA much more difficult, and much less successful that those that I know who tolerate it.  My friend and I often compare notes about our medications and treatment, since lupus and RA often use the same treatments and standard protocols.

Prognosis and future standards of care

Prognosis: normal life span

Even though my lupus has at times entered the higher risk area of organ damage involving my liver and central nervous system, I expect to be able to manage my lupus with the current therapies and lifestyle changes that optimize my health outcomes.  Daily exercise, plenty of rest, a healthy diet, sunlight/UV avoidance and staying within my limits all play a part, along with medications, in managing my lupus.

The exciting new biologic drugs such as the belimumab (Benlysta) I am currently receiving by monthly infusions, are emerging as likely parts of new and developing standards of care for lupus, now and in the future.

Lupus and the first rolling shopping adventure

Christmas in April?

Christmas shopping is a funny topic in April, but as I was thinking about firsts with lupus, I realized that my first rolling shopping mall trip was one of my most memorable lupus firsts.  Many years ago, when Christmas was approaching, I had to face the fact that shopping and the mall had been my absolute last priority, as I struggled through an intense long-lasting arthritis flare of my lupus.  Walking was extremely difficult because of swollen and painful feet, knees and ankles, along with overwhelming bone-tired fatigue.  Because my husband had never done the Christmas shopping alone without me, he devised a plan to accommodate my severely narrowed physical abilities and endurance.

Arriving at the mall, we approached the customer service kiosk as my husband informed me he wasn’t going to let me wear myself out shopping.  Dismissing my protests, he spoke with the mall staff and checked out a wheel chair.  Pointing to the seat, he said, “let’s go for a ride.”  It felt uncomfortable at first sitting and depending on him to push me around.  I struggled with the strangeness of my new mall perspective.  Sitting at a lower eye level than standing, it was reminiscent of walking beside my mother with my hand in hers, and not being allowed to walk around at will.

View from the wheelchair

There was an uncomfortable feeling of frustrating helplessness.  I had to tell my husband each time I wanted him to take me closer to something, and when he was looking at something, he would push me just past it, with my back to what he was looking at.  It took awhile before we communicated well about how the wheel chair was changing my shopping experience.  I didn’t like that we were not walking hand-in-hand as before, but rather he was behind me and often didn’t hear what I said.  I was along for the ride, and I certainly didn’t feel like I was in charge!  I didn’t really like it.

However, shopping from a rolling perspective was also a great relief because of the extreme fatigue and pain my lupus caused, in or out of the wheelchair.  As we gathered many purchases, I soon had a full lap and was competing with the gifts for space in my wheel chair.  By the end of the trip, I was exhausted, and greatly appreciating the wisdom and leadership my husband had demonstrated when he insisted on carrying out his plan to keep my strength.  I realized in retrospect that I would have been absolutely unable to endure the shopping trip that we had enjoyed that day together, spanning many hours and every corner of the mall.  I had to acknowledge how much my lupus was disabling me.

Others helped me get around

This was not the last of my rolling shopping excursions.  After that, most of my other shopping trips in malls, departments stores and grocery stores were from a wheel chair for a while.  For the next three years or so, my lupus continued its exhausting, crippling flare, despite the cancer and transplant chemotherapy drugs I was taking to control it.  My lupus even progressed to where one Christmas I didn’t go to the mall at all, and all my shopping took place from my home office desk chair.  That year all our gifts were ordered over the Internet and delivered to our house.

It was a full four years before I eventually ventured briefly into a shopping mall again on foot, and almost a full ten years before I was able to stroll through a mall from one end to the other on foot.  Even now, I have to carefully consider my footwear and stamina when planning to go to a shopping mall.  Often, I strategically plan to visit one shop, parking near by it to cut my walking distances.  After treatments several years ago with infusions of the biologic drug Rituxan, my lupus never returned to its earlier severity.  Although it has been many years since I had to do my Christmas shopping from the seat of a wheelchair, I will still never forget the adventure of my first rolling shopping trip!