Come to see the butterflies, and leave with lupus awareness

Come to see the butterflies…

A significant number of people who visit my blog find it through search engines like Google, Bing, and Yahoo.  Since this blog is primarily about lupus, one might think that everyone who finds it is looking for information about lupus.  While that is true for many visitors, a good number also follow links here because they are looking for images of butterflies (maybe because they like butterflies as much as I do!)

No matter why people might find this blog, I am glad that everyone can leave with greater lupus awareness.  This is a place where both butterflies and lupus awareness can be found in abundance.  If you want to know more about the connection between lupus and butterflies, check out my April 24, 2012 post, “Lupus and it’s mascot: butterfly or wolf?“.  This quickly took the “LAward” for the most highly read post on this blog, well into tens of thousands of reads!

And leave with…

So, if you are one of those who found me because you were seeking butterfly images, welcome!  I trust you will take a moment to learn a little more about lupus, perhaps by stopping for a few minutes to read a post or two.  You will find at least one butterfly picture in every blog post.

If you want to find out more about lupus, please read the “Lupus Medical Information” page of this blog.  It will take you to a page with basic information about lupus and links to more detailed authoritative information.  I suggest at very least visiting the Lupus Foundation of America at www.lupus.org.

If you just want to see the pretty butterflies and don’t feel like reading about lupus, no problem!  Please just click on the “Butterfly Collecting Adventures” button or browse through posts to see the butterflies on each, and enjoy.

My hope is that maybe you will do both — enjoy the butterflies and learn more about lupus!

If all you really want is a postage stamp summary of lupus, and no more, here are a few quick points:

• Lupus is a systemic connective tissue disease in the same family of auto-immune illnesses with rheumatoid arthritis affecting skin, organs and other tissues and body systems.
• Many lupus patients have skin rashes, arthritis, fatigue, mental clouding, mouth/nose ulcers, a butterfly shaped rash on their cheeks and are positive for antibodies against their own body cells such as ANA (antinuclear antibodies).
• Lupus can attack the kidneys, and is a leading cause of kidney failure.  50% of lupus patients have some level of kidney involvement.
• Lupus is difficult to diagnose, because it affects so many systems of the body, and can easily be confused with other diseases.
• Lupus affects each person differently, and can change suddenly and unpredictably in the same patient, going in and out of flares and remission.
• Although lupus is potentially fatal, if found early enough and treated properly Lupus can be well-controlled.
• Most patients can live a normal life span with little or no organ damage with standard treatments.
• Lupus is an important women’s health issue – it discriminates unfairly against women and minorities.  90% of lupus patients are women.
• Lupus is more prevalent in women of color: Hispanic, black, Asian, and American Indian women, with the highest mortality rate in elderly black women.

Lupus awareness…

Lupus awareness is very important, especially for those people who don’t yet know they have lupus.  For example, many people know enough about diabetes to recognize possible symptoms in another person, and would urge someone with diabetes symptoms to seek medical advice.  So, also, knowing enough about lupus to recognize its common signs and symptoms in a friend or family member could make a great difference, or possibly even save her life.

Lupus awareness is very important.  Although there is no cure yet, there are new and exciting medications, treatments and ongoing research that can help prevent lupus from destroying the health of those who have it.  Because one out of every 150 people has lupus, it is very likely that someone you know has lupus.

Thank you so much for stopping by, even if it was just to see the butterflies.  If you learned a little about lupus, even better!

Thank you for visiting
Lupus, the Adventure Between the Lines!

Lupus arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.

Lupus neuropathy in the night watches

neuropathy intrudes into sleep

The onset of lupus neuropathy is never welcome, and interrupts some important times of rest in lives of lupus patient it affects.  At a patient’s most weary moments, this short-circuiting nerve pain and irritation may flow in disconcerting waves through thighs, knees, calves and feet.  For me, neuropathy sometimes comes on suddenly in the night watch, in the wee hours of the morning between midnight and four in the morning, intruding into what would otherwise be a restful, much-needed night’s sleep.

Neuropathy that wakes me is usually too intense and pervasive to ignore, it must be confronted.  Sometimes, when it strikes before bed time, I am able to rush to bed and fall asleep ahead of its full onslaught.  Other times, after sleeping a while restfully, it intrudes into my sleep like a robber who suddenly wakes the house.

waking realization of pain

My first waking realization is the pain in my legs and feet, and the gnawing persistence with which it wakes me.  I don’t want to wake up, I want to keep sleeping!  But, once neuropathy begins during my sleep, there is no escaping it without interaction of some type.  Along with intense restless pain in my legs, an inner ache and distress grips my weary malaise-filled torso.  There is no position of comfort to be found, no direction to toss or turn that will relieve the distressing sensations surging through me in miserable waves.  Sometimes the discomfort extends to the back of my neck and gives me a dull headache.

Tylenol, Ultram, Tea?

Getting out of bed is my only bearable option.  Moving, walking and getting my wakened body into motion seems to temporarily drown out the sensation in my legs, like turning up the volume on a stereo to drown out a yapping dog’s piercing bark.  I walk through the darkened house trying to think clearly enough to come up with an idea for relief.  Tylenol? Maybe that will be enough.  Ultram? Do I have enough hours to sleep for it to wear off before I have to get up?  Hot tea with milk and honey? Maybe increasing my  L-tryptophans will put me to sleep naturally.  However, sometimes I try those things and go back to bed, only to lay in the dark for another hour still feeling miserable and waiting for relief that doesn’t arrive.

hymns in the quiet darkness

On the worst neuropathy night watches, sometimes I wander out to the living room in my bare feet and pajamas, and spend a half hour doing yoga exercises dark to the rhythm of my husband’s snoring from the other end of the house.  Sometimes, I am able to sit comfortably enough to read my bible or a book, but other times, it is necessary to redouble my efforts to distract myself and drown out the neuropathy “noise.”  On the very worst nights, I give up trying go back to sleep.  I sit down at my grand piano in the dark and turn on the piano lamp behind the piano’s lyre, open a hymnal and start playing.

There, in the gently lit corner of my slumbering house, I quietly play hymns into the early hours of the morning and turn my heart to heaven.  If I cannot stop the neuropathy, and I cannot sleep, I resolve not waste precious hours in bed awake and miserable.  Instead, if sleep becomes impossible, I would rather sit in the dark playing music to honor and commune with my Almighty, merciful and comforting God.  This way, misery is forced to yield to the joy of fellowship with God in my quiet refuge of peaceful musical worship.

verses on these thoughts

A few verses from the Bible touching these thoughts:

Lamentations 2:19  Arise, cry out in the night: in the beginning of the watches pour out thine heart like water before the face of the Lord.

Psalm 63:6 When I remember thee upon my bed, and meditate on thee in the night watches.

Psalm 104:33  I will sing unto the LORD as long as I live: I will sing praise to my God while I have my being.

Psalm 107:28,31  Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!

The Beatles and two childhood friends with Lupus

The girl next door had lupus

The girl next door had Lupus.  We didn’t know it at first, but one day a few years after my husband and I were married, we were visiting my folks in California and my mother told me about Julie’s illness.  Later that week, we walked over to the house next door to see Julie while she stopped in to see her mom.  Julie and I sat down with our mothers in their kitchen and shared a cup of coffee and a long catch-up chat. Julie showed us the discolored rashes on her face, and told us about some of the troubles she had with lupus.

The somber mood of that conversation about lupus haunted me.  Lupus had become the great tragedy of Julie’s young life!  It was not too much later that I was also diagnosed with lupus.

front yards where we played together

trying to beat each other at jacks

When Julie and I were both children, we never worried about things like getting lupus.  We spent our time playing with dolls on each others front porch steps, playing hop scotch, shooting marbles and trying to beat each other at jacks.  Sometimes we would get all the kids together and start singing songs with our hair brushes as microphones, pretending to be the music stars we wanted to emulate.

Once in awhile, older girl who lived across the street would round up all the neighborhood kids, including her 11 younger brothers, and coax us all to act out the play scripts she had written.  Our neighborhood playwright’s front porch also happened to be the best “stage” on the street.

Julie had a sister one year older than me, my sister was two years older, and Julie was one year behind me.  Our ages made us all perfect playmates, except for the brief periods of family kid feuds that would spawn from time to time out of our corporate immaturity.  There were 9 kids between both of our large families, and on summer days, we would all set out on foot to the public swimming pool at the high school.  It was there Julie and her older sister taught me and my older sister how to swim.

both diagnosed with lupus

I had lupus arthritis symptoms as a child, pleurisy, mouth ulcers, and rashes, but never noticed if Julie also showed signs of it earlier in her life.

The stars we emulated in our front porch “concerts” were our favorite 60′s bands the Beatles, the Beach Boys and the Monkeys, and our favorite female singer Nancy Sinatra.  We each took turns performing our loud unaccompanied renditions of songs like “I Wanna Hold Your Hand” and “These Boots are Made for Walking” on our front porch “stages,” while all the other kids sat on the grass as our audiences.  If you were not around during the 1960s, these musical details will probably mean nothing to you.  But, I can even remember watching the famous “Ed Sullivan” TV show in the early 60′s when the Beatles had just come to America from England, when their performance was broadcast on live black and white TV.

I recently viewed this Lupus Foundation of America lupus awareness video by Julian Lennon, the son of singer and song writer John Lennon of the Beatles.  Julian tells about his young childhood friend, Lucy, that died from lupus in 2009.  Lucy was the inspiration for the Beatle’s hit song “Lucy in the Sky with Diamonds.”  Julian Lennon is a Global Ambassador for the Lupus Foundation of America and benefactor of the St. Thomas Lupus Foundation in the UK.

In Julian Lennon’s video, he tells about his connection to lupus and his friend who had lupus, Lucy Vodden.

Lupus and enjoying the small outdoors

moonlit back yard

Life  with systemic lupus has taught me that the pleasure of enjoying the sun’s warming rays is vastly overrated.  For many lupus patients who love the “great outdoors,” the size and scope of our fresh air experiences may need to be much smaller than we would like.  For me, sun exposure is a strictly forbidden pleasure, so satisfying my desire for “wilderness experiences” is often limited to the span of my large covered patio, front porch and moonlit back yard.  After nightfall, the world of the “small outdoors” opens up with great and promising possibilities.

fresh air, sans the sunshine

Why all this ultraviolet dodging and apprehension?  Why not simply step out into the sunlight of day and enjoy?  Many of us with lupus have sun sensitivity. When the spectrum of light contained in the sun’s warming rays strikes our skin, and penetrates into the tissues beneath, it causes more than warmth and comfort. UV light has the ability to activate the lupus antibodies that it touches as it passes through our translucent layers of skin.  So, I carefully dodge its downward daily flood of damaging rays and look for other ways to fulfill my longing for fresh air, sans the sunshine.

the backyard at night

So, here I stroll awhile in my back yard enjoying a quiet night’s walk with my dog through the damp lawn beneath our feet. Delighting in the fragrance of the newly mown grass in the yard, tonight is pleasant and refreshing as I drink in the cool night air of this late spring evening.

The dog romps around my feet begging me to join him in the simple amusement of a game of fetch. The pale glow of solar lamps lining the lawn provides faint light for his frolicking, as his impish exuberance entertains me.

enjoying the small outdoors

My favorite spot here is my porch swing, as I gently rock in time with cricket song and a nearby mockingbird with an identity crisis.  In this calm night, I can hear a faint rustling of a slow breeze blowing through the dark shadows of nearby trees, as the swaying moonlit silhouettes frame my yard and the “small outdoors” around me.  Here, I find peace and relaxation in the “nature experience” of my nighttime lupus adventure.

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.

Living with Lupus: Fact #22 – Not so beautiful butterfly rash!

Living with Lupus: The malar, or “butterfly” rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.  Before I was treated for lupus, a malar rash showed up on my face many times.  As a teenager, my mother was intrigued by the deep purple splotches I had over my cheekbones.

Faces of malar rash

Malar rash is one of the eleven diagnostic criteria for lupus.  After my treatment with Plaquenil, the standard medication for all lupus patients, most of the vivid pigmentation of malar rash quieted down.  Now, malar rash shows up after getting too much sun, or during a flare. To prevent over exposure to sun, I wear a large hat and just try to stay out the heat of the day.

Is it malar rash or rosacea?

The Lupus Foundation of America (LFA) provides this important discussion about malar rash, and compares it to rosacea:

“The butterfly blush or rash is a faint or prominent red rash over the malar area and the bridge of the nose. The rash does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red rash of the cheeks and bridge of the nose. Sometimes the rash is flat, and sometimes it is elevated. It may be in the form of red blotches or may be completely red over the area. The rash may be itchy, especially if it looks more like a rash than a blush. This rash is typical of SLE but is present in only about 30 percent of patients.

The butterfly rash is often confused by patients and by physicians with a similar red rash which also is over the cheeks. This rash is called acne rosacea. It does involve the areas of the outside of the nostrils and does involve the folds between the nose and the outer part of the lips. In addition, pimples may be seen on top of the red rash in acne rosacea.”

Malar rash or rosacea?

Treating malar rash is best accomplished by treating the lupus, and usually Plaquenil is prescribed.  Patients are encouraged to stay out of the sun to avoid excessive UV exposure, which triggers the rash.  Here are some tips the LFA recommends for reducing sun exposure:

1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

Not make up, it is malar!

Lupus malar rash and an unforgettable social reaction!

Once, I had very uncomfortable and unforgettable moment at work because of my malar rash.  A woman who really didn’t like me or our managing attorney very much began belittling me in front of other co-workers.  I was bewildered as this woman began broadcasting her catty critique, “didn’t you get a little too carried away with your rouge this morning?” assuming the unbalanced redness on my cheeks was because I had used my cosmetics without skill.

I will never forget standing there, with my mouth gaping, wondering what in the world she was talking about! I wasn’t even wearing any cosmetics that day, not even lipstick.  Unbeknownst to me, my malar rash had erupted during my morning bus ride to work from the sun exposure during my three block walk to my office.  I had not looked in mirror since leaving my house, so I was caught completely off guard by her stinging comment.

Forgive the unkind, unaware, rude people

This woman had an unkind habit of making fun of people to try to lower other people’s opinions of them, I suppose in misguided efforts to try to make herself  look better.  It is sad that some people think that making fun of someone who is different, albeit diverse from themselves, is somehow a social “sport.”  I think that people who act this way should actually be pitied, and even prayed for, but not hated — because of their lack of wisdom, kindness, insight and understanding.  They reveal the true shallowness of their own soul by their rude acts, and they completely miss out on the rich blessings that kindness produces in relationships.

Fortunately for me, a couple of coworkers who were the intended audience for her unkind “put down,” instantly arose to my emotional defense.  Without me saying a single word in retort, a couple of other coworkers immediately engaged the woman and publicly shamed her for her rudeness toward me.  They spoke directly to her and harshly condemned her behavior!  Others standing by in the room joined in a spontaneous chorus of rebuke.  My coworkers who knew about my lupus recognized it as the cause of my overly red cheeks. After confronting my critic, they turned to me with many encouraging comments.  As for me, for once, I was speechless!

Grateful for lupus awareness

In retrospect, I was very thankful most of my coworkers were lupus aware, and cared enough about me to take up my cause and handle this woman’s rudeness through a little well-timed peer pressure.  Later, I overheard a “water cooler” discussion among other members of the office about their disbelief and disapproval of the woman’s social crudeness, judging it grossly inappropriate for the woman’s supposed professional, economic and social class.

This woman’s stack of degrees and professional position did not impress anyone that morning, but lupus malar rash certainly had an unexpected impact on my day.

[NOTE:  This post was inadvertently published unfinished at 7:00 a.m. using the pre-scheduled posting feature, before I had really finished writing it and including the personal story I felt was very important to share.  When I realized that this morning, I went ahead and completed it over coffee this morning, and re-published the updated version at 9:30 a.m.  My apologies for making major changes to a post after its initial release.  LA 5-22-2012]

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: Fact #9 – Pain and Anti-inflammatory Drugs

Diagnosis and Treatment of Lupus: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Lupus causes inflammation in the synovial tissues inside joints of fingers, wrists, feet, ankles and knees. As a result of this inflammation, non-erosive arthritis can develop that causes pain, stiffness and swollen joints.  Decades before my lupus was diagnosed, arthritis was one of the first symptoms of my lupus that appeared as early as my kindergarten years, and recurred all through high school, college and early adult life.

Medications for lupus pain and inflammation

Medications, both over-the-counter and prescription drugs, are used to used to control the pain and inflammation associated with lupus.  Medications for inflammation include non-narcotic analgesics/anti-inflammatory medications such as aspirin, ibuprofen, naprosyn, sulindac, and non-steroidal anti-inflammatory drugs (NSAIDs). Pain medications range from simple aspirin or acetaminophen to strong narcotics used for the most severe lupus pain.  Persistent or severe inflammation at times requires the use of steroid medications to reduce swelling in involved joint tissues.

The Lupus Foundation of America provides the following information on NSAID medications used to treat painful inflammation.

“Pain and inflammation are common in people with systemic lupus erythematosus (SLE). Sometimes these symptoms indicate serious organ involvement which may require powerful anti-inflammatory and immunosuppressive drugs, such as steroids (cortisone, prednisone).

At other times the inflammation is not as severe or does not affect major organs, and a less potent drug is indicated. In these cases, other milder anti-inflammatory and analgesic drugs can be used, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs).

While NSAIDs are not approved specifically for SLE by the Food and Drug Administration, they are approved for use in many musculoskeletal pain conditions such as arthritis and tendinitis, which also afflict people with lupus.”

See, the Lupus Foundation of America web site for more information on NSAID medications.

Treatment of lupus arthritis led to a diagnosis

Other approaches to dealing with pain may include various therapies such as applying heat, gentle exercise to stimulate pain-releiving nature endorphins, prayer, meditation, bio-feedback and other non-chemical alternative approaches to pain management.  The most effective methods for reducing and coping with my lupus pain include exercise, heat, acetaminophen and sometimes tramadol for the times I experience the most intense discomfort.

One of the reasons I first sought medical treatment for my lupus arthritis pain was because I was unable to take most over-the-counter NSAIDs, and on my own could find no relief for my pain and joint swelling.  I had intense pain all night, lost a great amount of sleep, and sometimes could not walk without experiencing overwhelming pain and stiffness.  Seeking help for my severe and unrelenting arthritis symptoms eventually led my doctors to find a reason for my symptoms, and this led to my lupus diagnosis.

Diagnosis and Treatment of Lupus Fact #7 – No single test for Lupus!

Diagnosis and Treatment of Lupus:  There is no single laboratory test that can decide whether a person has lupus. Diagnosing lupus involves analyzing the results of several lab tests, a review of the person’s entire medical history, and the history of close family members.  When I was finally diagnosed with Lupus, I had demonstrated 7 of the 11 diagnostic criteria, a positive blood test for ANA and rheumatoid arthritis was ruled out as a cause of my symptoms.

Common blood tests to look for Lupus

• Anti-nuclear antibody test (ANA) looking for autoantibodies in the blood that attack the nucleus of cells
• Anti-DNA antibody test to look for antibodies that go after cell’s genetic parts
• Anti-Sm antibody test to look for Sm (ribonucleoprotein inside cell nucleus) antibodies
• Blood complement find out how many of a certain type of proteins are used up during immune reactions
• Tests for amounts and types of C3 and C4 complement proteins

“See Lupus Foundation of America website for more detailed information about lab tests used to diagnose lupus.

Diagnostic Tests

Doctors use many sources of information to decide if a person may have lupus.  They look at their medical history, lab tests and current symptoms, reviewed against 11 Lupus diagnostic criteria. If a patient has at least 4 of the 11 criteria, the diagnosis might be lupus, but some of the criteria are more important that others in making the diagnosis.  7 criteria are symptoms, and 4 are found using lab tests.

The ANA lab test helps doctors diagnose lupus, because 95 % of patients with systemic lupus have a positive ANA. Having symptoms of systemic lupus with a negative ANA usually makes the doctor look for another cause for their symptoms than lupus.  Even a positive ANA all by itself is not enough to diagnose lupus.  Other autoimmune conditions and diseases can also have positive ANA tests, such as:

Rheumatoid arthritis
Sjogren’s (show-grens) syndrome
Scleroderma (sklare-a-derm-a)
Infectious diseases such as:
Mononucleosis
Malaria
Subacute bacterial endocarditis (SBE)
Autoimmune diseases including:
Autoimmune thyroid disease
Autoimmune liver disease

The 11 Diagnostic Criteria for Lupus

The Lupus Foundation of America website shares the following information about the diagnostic criteria used to look for lupus:

“To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

People with lupus also may experience symptoms that do not appear among the ACR criteria:

• fever (over 100° F)
• extreme fatigue
• hair loss
• fingers turning white and/or blue when cold (Raynaud’s phenomenon)”