One Patient's Positive Perspectives

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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, stars and an invisible medication leash

gourmet pizza…

Friday afternoon while telecommuting at home, the call came from my husband inviting me to go out for dinner.  So, I logged off the work network, shut down my computer early and got ready for date night.  He picked me up a few minutes later, and we went to one of our favorite Italian spots for dinner, where we shared a wonderful gourmet pizza.  After a while, we ventured outside on its quiet patio for dessert and coffee under the stars. The moon was a bright clear crescent, and the night air cast a relaxing mood over the evening.  Lingering over the last few sips, we decided the night was too young to end and decided to go for a drive.

coffee and dessert outside…

Heading northeast out-of-town, we soon reached the outskirts of the Phoenix metropolitan area.  The night was clear and the air temperature was cool and refreshing, so we opened the moon roof on our PT Cruiser and just kept driving.  I leaned my car seat back just far enough to get a wonderful view of the stars overhead through the open roof.

Perfect night for star-gazing

Before long, we were at the junction of the Beeline Highway, and turned north toward Payson, Arizona, heading out still farther away from town.  The mountain roads were familiar from the years my husband spent growing up in the Arizona mountains north of Phoenix, so we relaxed and enjoyed our impromptu road trip.

It was a perfect night for star and moon gazing.  The air was clean and pure as we escaped the smog of the metro area, and soon my head was clear and awake from the increased oxygen and crisp fragrance of the altitude.

Drinking in the night air

We drank in the night air in deep droughts, and filled the depths of our lungs to capacity with every breath.  The air, moon and stars were refreshing and relaxing and we enjoyed an unhurried relaxed conversation.  What a nice unplanned change of pace!

An hour and a half later, we arrived in Payson and contemplated looking for a room to stay overnight.  The signs advertising a farmer’s market on Saturday morning were enticing, and an overnight in the mountains sounded like such a fun unplanned thing.  I just love waking up to the exhilarating fragrance of crisp mountain air.

Medication leash drew us home

Then, reality set in.  In our spontaneity, we did not consider packing or bringing medications. My evening doses were probably not all that earth-shattering for me to miss once, mostly long-acting drugs.  But, my husband’s evening epileptic medications were quite another thing! If he were to skip night-time medications, that would mean risking a seizure in the night or next morning, and that I would be required to drive the mountain roads home the next day.  Without morning prednisone and other lupus prescriptions, and with my morning CNS lupus symptoms, the proposition sounded too dangerous.

Maybe next time…

So, partly because of my medication needs, and because of my husband’s, our invisible medication leashes forced us to turn the car around to finish the last half of our Friday night star-gazing trip. Perhaps in the future, I will plan better for the unplanned.  It might not be a bad idea to stash a couple of morning and evening medication doses for each of us in the glove box of my car.  Then, perhaps we might be better ready to follow our next whim of small adventure, and we might loosen the hold of our invisible medication leash.

Living with Lupus: Fact #21 – Nervous system involvement

Living with Lupus:  More than 80 percent of people with systemic lupus will experience some type of nervous system complication. Nervous system issues in lupus range from mild confusion or memory loss to strokes, seizures, and vision problems.

Lupus brain fog

Lupus brain fog

Most lupus patients experience a general mental clouding that is often dubbed “brain fog” like that experienced by other people auto-immune illnesses like fibromyalgia and multiple sclerosis.  This is not necessarily due to Central Nervous System lupus, but is more a byproduct of the metabolic processes related to cellular apoptosis, or cell death.

In non-medical terms, the best that I understand this process is that a normal amount of cell death happens all the time, and then our body makes new cells all the time to replace the ones that grow old and die.  The dead cells are made up of molecules, proteins, genetic material and other biologic building blocks that become the body’s trash to throw out when a the cells die.  In other words, the pieces of broken dead cells become garbage in our body, or what is called “cellular debris.”

As our body works hard all night to sweep up the aftermath of cell death that happens while we sleep, the higher than normal rate of cell death in lupus creates a huge load on our body’s sanitation system, and the garbage gets piled up in our body.  One of the places that is noticeably affected by too much cellular debris is the brain, and it clogs up the normal processes and makes it harder to think clearly.  As a result, many people with lupus experience mental clouding, or “brain fog,” especially in the morning when other lupus symptoms such as arthritis are also most pronounced.

Morning fog lifts as the day goes on…

During a visit a few years ago to Anchorage, Alaska to attend a LFA conference about lupus, I had an opportunity to visit with Robin Brey, M.D., a neurologist who worked at the University of Texas Health Science Center in San Antonio and was president of the LFA, South Central Texas Chapter and chat with her about nervous system involvement of lupus.  Doctor Brey was quoted in a 2005 Lupus Now issue, explaining that “cognitive dysfunction definitely is the most common symptom of CNS involvement that she sees.”

“The way I relate to the term ‘cognitive dysfunction’ is that it’s a problem of difficulty finding words and retrieving information,” Brey explains. “My patients say it feels like they have brain fog.”

CNS lupus involvement

CNS involvement

In addition to the milder brain fog, some lupus patients also have Central Nervous System (CNS) involvement of their lupus.  This is a more serious problem than brain fog, and if uncontrolled can result in damage to brain tissue and even in extreme cases death.  This, like any other attack organ damaging attack of lupus is important to treat quickly and appropriately to prevent possible damage to brain tissue or other disabling complications.

CNS symptoms

My own lupus challenges include CNS involvement.  CNS lupus is the major reason that my lupus medications eventually included stronger drugs such as prednisone, kenalog injections, methotrexate, azathiaprine, rituximab infusions and now belimumab infusions.  Each patient with this problem is carefully followed by their rheumatologist, and may also be treated for their CNS symptoms through referral to a neurologist.  The most severe cases of CNS involvement can also cause seizures, but I have never had this problem myself.

My CNS lupus symptoms usually indicating a flare include:

  • mental confusion
  • short-term memory problems
  • cognitive dysfunction and disruption
  • difficulty concentrating and solving problems
  • general sense of confusion, lack of direction
  • disorientation to space and getting lost trying to find familiar places
  • forgetting names of people I know very well
  • confusion about time, day, date and even month
  • problems with math calculation
  • difficulty with eye-hand coordination, vision and depth perception
  • slurred speech and difficulty articulating words while speaking
  • headaches
  • reversible depression

Most of my CNS lupus symptoms typically immediately responds to steroid treatments given by my doctor, either as an injection or a large burst in my daily prednisone dose, followed by a gradual tapering of the dose as the flare lets up.

Authoritative information about CNS lupus and other types of nervous system involvement of Lupus is found at the Lupus Foundation of America’s website.  Their article on the Nervous System  discusses various types of nervous system involvement, and highlights many important issues and symptoms associated with these possible complications of lupus.

Nerve cell

Peripheral and autonomic nervous system and lupus

Peripheral neuropathy with lupus can be caused by inflammation, compression, damage or swelling in tissue around nerves, resulting in vision problems, facial pain, ringing ears, dizziness, drooping eyelids, or carpel tunnel syndrome.  My lupus experiences include peripheral neuropathies in my legs, cranial nerves and even once neuropathy was diagnosed as the cause of severe pain in a tooth that almost made me get an unnecessary root canal.  Thanks to an astute endodontist who knew about lupus, he accurately diagnosed my problem and we treated my lupus, instead of pulling a tooth!  Neuropathy can cause burning, pain, numbness and temporary disruption of normal nerve functions.

Neuropathy nerve damage

Lupus can cause over activity in the autonomic nervous system (ANS,) disrupt normal regulation of automatic body functions and cause numbness, burning, tingling, mental confusion, headaches, and digestive problems.

Raynaud’s phenomenon happens when ANS lupus involvement causes inflammation in nerves or blood vessels, making vessels spasm and restricting blood flow, especially in repsonse to cold. Finger tips or toes turn red, white, or blue and may also hurt.

Headaches in lupus patients can be due to migraines, or can be caused by vasculitis from active lupus causing blood vessel inflammation. Lupus headaches that don’t respond to over-the-counter pain medications should be discussed with the patient’s doctor.

Coping with Lupus: Lupus Fact #15 – Four Types of Lupus

Coping with Lupus:  There are four distinct forms of lupus.  Systemic lupus is the most common type of lupus.  The other three forms of lupus are cutaneous, drug-induced and neonatal.  Drug-induced lupus and neonatal are not a sustained lupus, but systemic and cutaneous lupus are auto-immune conditions that tend to stay with a patient throughout their life, since there is no known cure yet for the latter two forms of lupus.

  1. Systemic lupus – organ and non-organ threatening
  2. Cutaneous lupus – non-systemic discoid lupus
  3. Drug-induced lupus – caused by certain medications known to produce temporary lupus
  4. Neonatal lupus – affecting newborns born to mothers with lupus

Distribution of Forms of Lupus

The percentages for the different types of lupus came from statistics provided by the Lupus Foundation of America in an article on lupus demographics.  I used the data LFA supplied to develop the following pie chart, to show the distribution of lupus types.  Two subgroups of systemic lupus are shown for the 50% of systemic lupus patients with major organ involvement in their lupus, and the remaining 50% who have milder forms of the disease.

Some patients with non-systemic discoid/cutaneous lupus see their lupus develop into systemic lupus.  This only happens in a percentage of patients who start out with cutaneous lupus.

The NAIMS online publication, Lupus: A Patient Care Guide for Nurses and Other Health Professionals, outlines how systemic lupus can affect any organ system of the body.

General Manifestations

  • Fatigue
  • Fever
  • Psychological effects
  • Emotional effects

Specific Manifestations

  • Dermatological: butterfly rash, photosensitivity, Discoid LE, subcutaneous LE, mucosal ulcers, alopecia, bruising
  • Musculoskeletal: arthralgias, arthritis, other joint complications
  • Hematological: anemia, decreased white blood cell (WBC) count, thrombocytopenia, lupus anticoagulants, false-positive venereal disease research laboratory test (VDRL), elevated erythrocyte sedimentation rate (ESR), lymphopenia
  • Cardiopulmonary: pericarditis, myocarditis, myocardial infarction, vasculitis, pleurisy, valvular heart disease
  • Renal: asymptomatic microscopic renal involvement, renal failure, fluid and electrolyte imbalance, edema
  • Central Nervous System (CNS): cranial neuropathies, cognitive impairment, mental changes, seizures, stroke, peripheral neuropathy, meningitis, coma, psychosis
  • Gastrointestinal (GI): anorexia, ascites, pancreatitis, mesenteric or intestinal vasculitis
  • Ophthalmologic: cytoid bodies, dry eyes

Other Key Issues

  • Pregnancy: lupus flare, miscarriage or stillbirth, pregnancy-induced hypertension, neonatal lupus
  • Infection: increased risk of respiratory tract, urinary tract, and skin infections; opportunistic infections
  • Nutrition: weight changes, poor diet, appetite loss

Symptoms change with some constants

Lupus potentially can affect every patient differently, and from time to time differently in each patient.  My systemic lupus has shown the following manifestations from the above lists: fatigue, fever, emotional and psychological effects, butterfly rash, photosensitivity, discoid LE, mucosal ulcers, alopecia, bruising, arthralgia, arthritis, anemia, pleurisy, edema, cranial neuropathy, cognitive impairment, peripheral neuropathy, and dry eyes.  Few of these manifestations have been present at the same time.  The only constants are fatigue, photosensitivity, mucosal ulcers, arthritis, cognitive impairment, peripheral neuropathy and dry eyes.  All other symptoms come and go.

Diagnosis and Treatment of Lupus: Lupus Fact #8 – Rheumatologists and specialists treat lupus

Diagnosis and Treatment of Lupus:  Lupus is primarily treated by a rheumatologist, a physician who specializes in conditions affecting the joints and muscles.  Most lupus patients see several different doctors over a several years before they finally get an accurate lupus diagnosis.  My family doctor who finally suspected an autoimmune cause to my health problems, referred me to a rheumatologist who specialized in treatment of autoimmune diseases such as rheumatoid arthritis, gout, and lupus.

Other types of doctors that treat lupus

Some people with lupus may need extra care from specialists when persistent symptoms or organ threatening lupus complications may require the involvement of specialists who are highly knowledgeable in treating specific organs and body systems, such as:

Many specialists treat lupus

Dermatologists – cutaneous lupus, discoid lupus rashes, sun sensitivity, and some more serious lupus skin conditions

Nephrologists – various stages of kidney disease, kidney dialysis management and post-transplant care

Cardiologists – pericarditis, endocarditis, lupus valve damage, congestive heart problems secondary to lupus and extended steroid treatments

Opthamologists – annual eye exams for patients taking Plaquenil medication, treatment of cataracts from extended steroid use

Neurologists – central nervous system (CNS) lupus, neuropathy, peripheral neuropathy, seizures

Gastroenterologists – lupus liver involvement, elevated liver enzymes, lupus digestive system inflammation and other symptoms

Dentists and Otolaryncologists – sjogren’s syndrome, oral and nasal ulcers

Orthopedic Surgeons, Chiropractors and Physical Therapists – rehabilitation and surgery in damaged joints and weakened connective tissues and ruptured tendons

Rheumatologists treat lupus

Since nearly any system of the body can potentially be affected by lupus, or by medications used to treat lupus, nearly any type of medical specialist might become part of a lupus patient’s treatment team.  Usually, rheumatologists are the primary physician involved in oversight and management of a lupus patient’s overall treatment and medications.  My rheumatologist and family practice doctor work closely together to coördinate the treatment of my lupus, asthma, sleep apnea and degenerative disk disease.

Lupus and Benlysta after 7 months – Infusion #9

Finally, Benlysta infusion #9

Last week, it was a relief to finally receive a twice postponed Benlysta infusion for my lupus.  Also, today marks one week into the  April Health Writer’s 30 day challenge, and over 7 months (32 weeks) into my Benlysta treatments.  Happy day #225 with Benlysta.  Today is an important milestone, simply because I am declaring it one for both reasons!

Asthma relief inhaler Xopenex

After spending most of March fighting a nasty long case of bronchitis, I am just now finishing the last doses of my fourth antibiotic prescription.   Cipro, Zithromax, Cipro a second time (because it kills mycoplasma my doctor found after Rx #2,) and finally Bactrim.  Along the way from sick to well, there were three courses of steroids, four doctor appointments and one telephone consult.  The recurring fevers are gone, my lungs are mostly clear, the coughing and choking have stopped, I can talk and sing again, and oh, yes, I can even breathe most of the time.  Except for the moments when my slightly flared asthma kicks up, my respiratory system is back in working order and I am back to work full-time.  What a relief!

My husband has explained lately how much his joints have hurt after working long hours and accomplishing some major projects at work.  As we talk, I have realized that my joints have been hardly hurting at all.  Usually, because of my lupus, I am the one who wakes up with joint arthritis pain, and he is the comforter.  Lately, our roles are decidedly reversed.  Each time I quietly realize that I don’t hurt, I have a wonderful opportunity to be thankful for the improvement.

Declaring victory!

What lies ahead with my lupus and Benlysta?  I’m not really sure, but I know my rheumatologist is not going to be pleased hearing about my 4th infection in the last 4 months of infusions.  He commented with concern about it the last time I saw him, when I had only had 3 and he is sure to be concerned.  I am feeling pretty good now, and doing little complaining.  My energy levels are up, my lupus peripheral neuropathy symptoms are nearly dormant, my joint pain is down, and my CNS lupus symptoms seem to be in check.  I am waking up in the morning, sometimes before the crack of dawn, and feeling pretty decent.  I will take decent and declare it to be a minor victory.  Decent is acceptable to me any day!

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