Montreal report shows possible connection between lupus activity and smog particulates

Photo credit Ben Amstutz, used with permission

Today, I read in Environmental Health News about a 2010 research report about lupus and environmental triggers.  A lupus treatment center in Montreal studied the possible connection between pollution and lupus flares. Citywide collection of smog readings and lupus activity for over two hundred lupus patients were reviewed over a seven-year period, leading to evidence of a possible connection between a specific smog component and increased lupus activity.

This is one of the first reports to study a connection between smog and its possible affects on lupus activity.  To read the full report, please visit the following link.  PM 2.5 Pollution Linked with Lupus Activity

Smoggy Bay Area

Smoggy Beginnings

My own connection to unhealthy smog exposure dates back to my early childhood.  I grew up in the San Francisco Bay Area, and developed allergies to the region’s smog.  I remember my doctor talking to me about my condition he called “bay area throat” in the 1960s and 1970s, described then as a regional phenomenon connected with smog irritation.  I can remember summer smog alerts when I was a child.   Late summer climatic heat inversions trapped the brown smog laden air near the ground and caused rare hot weather around the Bay Area.

After high alert smog exposures, I would often develop respiratory congestion with symptoms of inflamed vocal chords and a hoarse voice.  This was a great recurring frustration when I was studying classical music and voice performance at the university there!  One time years after leaving the San Francisco Bay Area, I returned to my home church in the East Bay to do a concert with my singer/pianist husband, and lost my voice with the same symptoms.  He had to perform all by himself!

High smog exposure levels in cities

Smog exposure commuting

While living in Phoenix, I was eventually diagnosed with smog-connected nasal allergies, long before also receiving lupus and asthma diagnosis.

My own lupus was not diagnosed until my early childbearing years.  After my second child was born, my ever-changing symptoms showed distinguishable patterns and I was finally diagnosed with lupus.

Smog exposure commuting

Over the next ten years, I commuted to my jobs in Phoenix law offices every day on the city bus, usually switching buses at points in the heaviest morning commute corridor of the city.  Over those years, I had daily exposure to some of the heaviest concentrations of smog possible in Arizona, and according to an article I read, one of the ten most polluted areas in the country.

Perhaps any connection with smog in my auto-immune history is a coincidence, but perhaps smog components were one of many causes or contributing factors to my development of active lupus.  This type of possible environmental trigger should be studied more to help find or rule out smog as a possible link to triggering lupus and its flares.

Avoiding smog while commuting

Avoiding smog exposure

I no longer commute on the bus for several health-related reasons:

1) Waiting for buses and walking several blocks to my destination provides too much sun exposure for my lupus and causes skin rashes and other lupus symptoms to flare.

2) My lupus arthritis prohibits my ability to walk any measurable distance.

3) Exposure to the smog aggravates my allergies and asthma, which when flared, also seems to trigger flares of my lupus.

Consider healthiest commute alternatives

Now, I drive my car a total of almost 50 miles each day commuting four days each week and telecommute the fifth day.  While driving, I keep my car windows closed, my air conditioner on (it is Phoenix, after all) with the fan set to circulate the air inside my car.

I shun the smog as much as possible!  Whether or not this helps my lupus or not, I do know it helps my allergies an asthma.

My advice to other lupus patients is to carefully consider your form of transportation carefully.  If you show any worsening of symptoms that seem triggered by exposure to smog or other environmental elements, talk to your doctor about it!

Read more about smog and health/lupus:

• The Mayo Clinic article Non-allergic Rhinitis Risk Factors identifies lupus as a risk factor in upper respiratory conditions.
• The Lupus Foundation of America lupus expert Dr. Mark Gourley in Lupus and the Environment discusses air pollution and other possible environmental triggers for lupus.
• A Science Daily reference article, Pollution, mentions a possible lupus connection to air pollution.
• In the medical journal, Epidemiology an article on Long-term Exposure to Air Pollution and Increased Mortality in Lupus by the University of North Carolina School of Public Health, the U.S. EPA’s National Center for Environmental Assessment, the National Taiwan University Department of Bio-environmental Systems Engineering, and the San Diego State University Department of Geography provide epidemiological evidence supporting the novel hypothesis that particulate air pollutants increase mortality in lupus, likely through cumulative cardiac damages.
• In the US National Library of Medicine, National Institutes of Health, Environmental Health Perspectives Journal, a 2011 report on Associations between Ambient Fine Particulate Levels and Disease Activity in Patients with Systemic Lupus Erythematosus (SLE) discusses the above-cited Montreal study on the potential influence of particulate matter (PM) air pollution on clinical aspects of SLE.

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 a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.

Lupus, singing and a visiting hummingbird

Back to singing and the swing of things

After any illness, it is hard to get back into the swing of things and resume a normal schedule. Sometimes this is due to lingering symptoms and post illness exhaustion, as well as adjusting to the shift back into active mode. With lupus, the challenge for me is knowing how to find the right speed to resume my normal activities.

Today, was my first Sunday back attending my normal schedule of church activities, singing at a morning choir practice, along with the congregation during the service, with the choir, and even in a duet with my husband (all without choking or exhibiting other socially unacceptable post-bronchitis behaviors.)  He sang the lead, and I did a softer not-too-demanding harmony part.  I love singing with him, it is one of our life’s special joys.

After church we headed home to cook a nice Sunday dinner for my family, and to enjoy a much-needed relaxing afternoon.  Kicking up my feet for a while sounded like a perfect plan, especially since my hand joints were swollen and red this morning from mildly flaring lupus arthritis.  Hopefully, this week my family doctor and rheumatologist will allow resuming my monthly Benlysta infusions that were delayed two weeks due to bronchitis.

Surprise dinner guest

Then, during dinner, we had a delightful surprise visitor!  A little backtracking will fill in some missing information:

About a week ago, my husband and I were sitting in the kitchen and noticed that a hummingbird had begun building her nest outside our dining room window, anchored to a small branch in our lemon tree.  We enjoyed watching her as she industriously came and went, poking dry leaves and other building materials from our yard into her nest construction project.   After last week’s late winter storm, we hadn’t seen her since.

During today’s Sunday afternoon dinner, we noticed the tiny mother bird had returned and was settled in, sitting atop her newly built nest.  I grabbed my digital camera, and walked around the house, sneaking quietly into a good vantage point near her nest and waited.  I enjoyed a quiet restful moment drinking in the smell of the ripe lemons hanging above me, and tried to blend unnoticed into the dappled afternoon shade of the tree.

Another bird's tiny hummingbird eggs

Soon, I was rewarded when she returned to tend her nest.  She momentarily fanned her whirring wings over the nest, held them still for a split second, and then tucked them to her sides.  It was exciting be close enough to zoom in and catch the tiny mommy bird nestled on her perch.  It seems to me she posed very nicely for my snap shots of her motherly waiting game, and amazed me with the small walnut size of her nest.  If I didn’t think getting too close would scare her off, I would peer over the edge of her nest to catch a picture of her tiny eggs.

However, my respect for the tiny bird mommy-in-waiting will probably keep me from intruding that closely. I will borrow my picture of the eggs for the time-being.

Lupus and postponing a Benlysta infusion

Two weeks sick but not from lupus!

Two long sick weeks from something that isn’t lupus is two weeks too long!  My doctors both agree I’m still too sick with Bronchitis to have this week’s  Benlysta infusion.  My wise family doctor‘s hunch made him test for mycoplasma, and he was right.  So, he re-prescribed Cipro, explaining that it knocks out mycoplasma.

So, what is a mycoplasma, anyway?  The answer is found in what it isn’t.  It isn’t really a typical bacteria, and it isn’t a virus.  It doesn’t have a normal cell wall, but has a plant-like soft pliable cell surface.  It is tinier than normal bacteria, and is hard to see under a microscope.  Mycoplasma stick to the outside of infected mucous membranes, and cause most cases of “walking pneumonia.”  Mycoplasma infections are hard to catch except between people who live close together, and is common in child care centers, schools, dorms and hospitals.

Ordinarily, mycoplasma causes mild walking pneumonia and sometimes antibiotics  are not even needed!  It got me harder than that.  Yesterday, I was glad to be able work my first full day since getting sick 2 weeks ago.   My asthma is still bothering me and my lungs are still congested.  Yesterday I brought my trusty little asthma nebulizer along, and it really helped me breathe (not breeze or wheeze) through my work day.

My husband has been saying lately that my lungs sound like a wheezy seventy-year old! Flattering, wonderful mental image, isn’t it?

Lungs sound like wheezy seventy-year old!

This week is the first time my Benlysta infusion is being delayed because I am sick.  Today I did some tinkering in the blog software and wandered through this blog’s widgets to reset my daily count-down gadget so it will accurately announce “EightDays Left Until the Next Benlysta Infusion” instead of only one day.

Lupus is not my Sunday morning foe today!

Lupus is not my Sunday morning foe today

Here I sit on a Sunday morning, trying to overcome the aftermath of a tenacious case of bronchitis.  Ordinarily, my Sunday morning battle would be my lupus, trying to get coherent mentally and physically functioning enough to get to 8:10 a.m. choir practice at church, a  9:00 Sunday School class followed by a morning worship service.  Today, lupus is not my challenge.  It is strange to have something other than lupus be my medical challenge for so many days, and now weeks in a row. Today I am just battling asthma and bronchitis.   Somehow, in a strange way, it is almost refreshing to fight a different medial foe.

Using my asthma nebulizer

So, here I sit for a few minutes, writing my blog and using my asthma nebulizer machine to dilate bronchi.  Soon, lungs should be open enough to sit quietly through just the worship service at church without coughing and distracting everyone around me, at least for an hour or two.  At the end of last week, when my bronchitis re-surged and my steroid dose had dropped to normal, and I was suddenly getting worse instead of better, my doctor started me all over again on a second larger and longer burst of steroids.  I am finally getting over this enough to rejoin my social world safely (for me and for them) however briefly, at first.

My lupus symptoms have now been completely suppressed by the high steroid doses, so my joints are happy and my CNS lupus is quiet this morning.  Other than being unable to breathe well, I feel otherwise semi-decent.  However, being a merely one-service church observer and not a performer and singer will be a challenging enough of a role and adventure at church for me today. As a result, today probably won’t even include singing with the congregational songs or choir, and today certainly holds no plans for solos or duets during the services.

It is a different Sunday!

Besides, there should probably be no handshakes with others in the congregation today, I care too much for my friends at church to share the germs with them.  The afternoon will not include a visit at a nearby senior assisted living home where I play piano some weeks for their Sunday afternoon worship service conducted by a preacher from our church.  The residents there sure don’t want my residual bronchitis germs today!  A 4:00 p.m. practice for a ladies ensemble song is not in today’s plan, either, and nor will be the evening church choir practice at 4:30 p.m., nor the evening worship service at 6:00 p.m.  I won’t even be there to watch.

The day ahead looks like it will deviate significantly from normal Sunday routine.  It will be a great blessing to be back to church this week, and be well enough to at least attend the worship service.  I have missed church while so sick.  This is a different kind of Sunday morning adventure, but lupus is refreshingly not my Sunday morning foe today!

Lupus, bronchitis and a breeze from the lemons

Lemon breeze

On this quiet sunny morning,
a breeze of spring does blow,
through the branches of the lemon tree
with a steadiness, and slow.
It winds its way across the beds
of spring flowers in early bloom,
then scrubs the mustiness of winter
from the corners of my room.

It’s fragrance is refreshing as it swirls around me here,
with a gentle touch of sweetness from the garden that is near.
A spiciness of citrus, with the pungency of earth,
combined with floral essence, it has rare perfumer’s worth.

Floral essence

As I lay convalescing
of this illness in my lungs,
I am encouraged and invigorated
as dreariness is expunged.
It’s fragrance turns thoughts outward
to future healthier days,
and brings a gentle smile and solace,
to weary sickroom ways.

Lupus Adventurer

Copyright March 2012

Lupus, when it is not to blame

Another case of bronchitis

Well, here we sit again with yet another case of bronchitis. The good news is that it is not pneumonia like my husband has now. The bad news is that it is bad enough to have me stuck in bed fighting a never-ending, ever-deepening cough.

He had pneumonia... look out!

My husband had the distinct joy of getting sick first. Over 48 hours, he could feel it coming on, and then he developed a burning chest, cough and fever. He slept in our already contaminated room, while I tried to stay well by camping out on the living room couch. I tried to dodge his germs in vain.

A week later, our doctor declared his illness was pneumonia and soon after, my 48-hour warning began. So much for trying to stay well!

Sick, and Sicker...

I had enough time for a couple of days last week while I still felt decent to get a boatload of work done behind a closed office door. I pasted a large Post-It Note on my glass office door that read “Enter at your own risk” with the letters “S-I-C-K” in the middle. By day 2, the post-it message read “S-I-C-K-E-R.”

Although it drew a few chuckles, for the most part my guest chair stayed empty, and I only saw the brief faces of those brave souls who poked their head slightly inside. The blessing? I got a lot done!

Diagnosis... bronchitis

By the time the predicted 48 hours had passed, I had a full-blown whopping case of bronchitis and was at a Friday doctor’s appointment preemptively set the day before, coughing from the bottom of my toes to my stomach.

The treatment plan Friday included lots of steroids and antibiotics.  Over the weekend, the coughing continued to deepen each day and I was pretty well down for the count. Yesterday morning I was back at the doctor for chest x-rays, lab work and new antibiotics.

When life gives you lemons...

So, here I lay in my bed with my Nook tablet PC, looking out the bedroom window at the lemons on the tree in my sunny yard beyond. Today, breathing, laughing, talking or moving are all nearly impossible, and I can’t really even blame my lupus.

Benlysta & Rituxan infusions for Lupus: the tortoise and the hare

Rituxan v. Benlysta?

Benlysta infusion treatments for my lupus have turned down a slightly bumpy road.  So far, Benlysta has seemed to produce gradual, but not dramatic, improvements in my lupus symptoms. However, bronchitis set into my respiratory system within 48 hours of my last infusion, and this is not the first case of bronchitis.  Additionally, over the following few days, a low-grade fever persisted while taking antibiotics, and lupus symptoms continued increasing.

Despite modest gains from Benlysta, my auto-immune response shifted into overdrive, perhaps in reaction to the infection.  My lupus symptoms had increased severity.

Increasing lupus symptoms

Besides increasing fatigue and inflamed joints, CNS lupus symptoms re-emerged and I was having serious trouble thinking clearly.  Making decisions as simple as picking what to fix for dinner were getting increasingly difficult,.  My memory was obviously affected and my family began seriously talking to me about the confusion they were noticing.  My husband, daughter, and son-in-law who live with me expressed their growing concern about my noticeable CNS Lupus symptoms.

Although the bronchitis responded quickly to a few days of Zithromax, at week’s end my lupus related auto-immunity kept building, with no apparent intent of backing down.

Waiting for Benlysta

It is tempting to adopt impatience toward the slow pace of Benlysta’s effectiveness.  After consulting with my rheumatologist last week, I am determined to sustain my optimism for Benlysta’s potential long-term effectiveness.  The literature indicates that we are just now reaching the point when Benlysta could start making a significant difference.  We knew from the beginning that Benlysta is somewhat slow on the uptake, precisely because of how it works.  This drug needs time to show its effectiveness, and it’s necessary to stay (a patient) patient.

Finding the contentment to wait for results is difficult, because it is only natural to compare this Benlysta experience with what happened after Rituxan infusions.  Six years ago, I received two Rituxan infusions in a Phase III Lupus Clinical Trial conducted by Genetech.  Rituxan quickly ushered me into an amazing five-year near remission.

Rituxan, the proverbial hare

The tortoise and the hare.  The difference between the speed of the two medications, Benlysta and Rituxan, is stark and a little hard for me to accept.   Both are very expensive! In fact, a year’s supply of Benlysta (12 infusions) and a year’s supply of Rituxan (3 infusions) cost somewhere around $30,000 to $40,000 for either biologic medicine.  My insurance paid the negotiated in-network reduced price for the year of $19,000 to the infusion hospital for FDA approved Benlysta, but denied multiple appeals to fund Rituxan.

Benlysta, slow and steady

Because my response to Rituxan was so amazing, in comparison, Benlysta’s performance now seems a little mediocre.  Will Benlysta be worth the cost of time and money?  So far, I think it is too early to decide that.  My enthusiasm about Benlysta’s effectiveness has been moderated a little, but we will follow the course of treatment to see the final results.  I am going to give it all the time my doctor recommends.

Perhaps the tortoise Benlysta, slow and steady, will win the race to control my Lupus symptoms.  The jury is still out.

Lupus, the uninvited guest, has company…

Bronchitis, at my door uninvited!

After being in an extended lupus flare, the last thing in the world I wanted was any uninvited guests to show up!  One unwelcome guest, Lupus, at my house is enough!  But, I recently found out that Bronchitis is not a respecter of persons or etiquette.  He moves in, uninvited, anywhere he can get his foot in the door, and stays for days or weeks at at time.  After over a week I have concluded that Bronchitis has absolutely no manners whatsoever!

Bronchitis didn’t care that I already had one uninvited guest living at my house.  Lupus already tags along and goes everywhere with me.  Sometimes she is such a nuisance, but I am somewhat used to her.  She is my inseparable constant companion.  That should be enough company for one girl to have to entertain at a time!  But, Bronchitis came in and sat down right next to Lupus and me, and followed us from room to room.  He really made things miserable for us.  He brought along his favorite annoyances and pranks: burning chest, coughing, aching, fever, insomnia, malaise.  He was just plain intolerable!

Bronchitis told me clearly he had no intent of leaving until he was good and ready.  How rude!  My already lupus-challenged mornings were just plain miserable, and this lasted all day long for days on end.  I was soon asking myself, “How did I even let him in the door?”

So, on Monday I took Lupus and Bronchitis with me to visit the doctor.  I asked the doctor to talk some sense into Bronchitis, and he obliged.  My doctor threw some medical sounding antibiotic words at him, and Bronchitis promised he would obey the doctor’s words.  Since then, he has been quite stubborn about following through with his promise, and is still hanging around and loitering!  The doctor assured me his words made quite an impression on Bronchitis, but that it might take a few days to sink in.

Runny Nose, Sneezy Nose and Watering Eyes came along, too!

But, after that, Bronchitis even got worse for a few days!  Bronchitis had the unmitigated gall to expand his uncouth behavior.  He used my cell phone to call up his cousin, Runny Nose, and she came over, too!  She even brought along her sister Sneezy Nose and half-sister Watery Eyes.  The three moved in for a few days and kept interrupting me constantly.  They would gather together and get right up in my face all the time.  That pesky trio made me the most miserable of all for three long blathering days!

I couldn’t get a word in edgewise, think a thought, or do a thing without first wiping off Runny or Watery, or being interrupted in mid-sentence by Sneezy.  Who invited them, anyway?  Oh, that’s right, it was Bronchitis!

I thought I would never get rid of those three sickly sisters!  Thankfully, Runny, Sneezy and Watery packed their bags and left yesterday.  I don’t think they liked my pet Sudafed or the Anti-Viral Kleenex that I kept drying them off with.  Fine, if they are offended by my cleanliness!  I am glad they finally left!  So be it.

However, Bronchitis is still hanging around.  It is still interrupting my thoughts, with occasional coughs and shortness of breath.  He even woke up my sleeping dog, Asthma.  He pesters and keeps that poor dog so agitated all the time, its a wonder he isn’t worn out by now.  I am hoping that my dog-whistle asthma inhalers will get him back under control when Bronchitis finally gets out of here.  My subdued little hound should behave better when things return to a normal routine, again.

This morning, I put my foot down and refused to take Bronchitis to church with me.  Fearing that he might abruptly decide to go home with one of my unsuspecting friends, I sent my husband off to church by himself.  So, I stayed home from church with Bronchitis and my faithful pup, Asthma.

Be gone in the morning!

A couple of hours later, I had a little talk with Bronchitis, and told him I expect him to be gone in the morning.  I made it clear he had long over-stayed his welcome.  I haven’t seen Bronchitis packing his bags yet, and its after dinner now, but the evening isn’t over yet!

Tomorrow, I plan to go to back to work.  Bronchitis is clearly not welcome there.  My hope is, that Bronchitis will follow me out the door and I’ll lock it.  If I can get into my car fast enough, and take off quickly, he just might not have time to get into the car with me.  Then, I will drive off to work without him.  At last, I will finally be free of him for the first time in 10 days! Or, so I hope!

I hope and expect Bronchitis will just wander off at that point.  I just hope he didn’t have time to snoop around and find my spare key!

At any rate, the doctor wrote down those antibiotic words for me.  He explained that sometimes Bronchitis likes to hang around the neighborhood for a few days.  He said to keep reciting the antibiotic words, so that if he knocks on my door again any time in the next three weeks, I will have the courage to send him away again.

What an adventure!  I am more than ready to be done with extra uninvited guests for now.  I just hope Bronchitis didn’t look up any of my friends’ addresses when I wasn’t looking.