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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: Fact #16 – Discoid is the most common lupus

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for approximately 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.  My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, hairline, scalp, chest, arms and thighs.  Now, occasionally a few discoid rashes between my fingers, on my forehead or cheek, or my hairline.

Cutaneous lupus

Forms of cutaneous lupus

The Lupus Foundation of America describes forms of cutaneous lupus in an article on photo-sensitivity and lupus:

1) Acute cutaneous lupus erythematosus (ACLE):

  • This is also known as the “butterfly rash” of lupus and occurs over the cheeks and nose.
  • It often comes on after sun exposure, and is associated with lupus flares.
  • ACLE usually heals within weeks without scarring.

2) Discoid lupus erythematosus (DLE):

  • The term “discoid” refers to the disk-shaped lesions of the rash.
  • The rash occurs mainly on sun-exposed sites.
  • The lesions develop slowly and heal over several months, and may cause scarring.

3) Subacute lupus erythematosus (SCLE):

  • SCLE is highly photosensitive.
  • It usually shows up as many red, circular shapes on the chest, back and arms.
  • It is often a little scaly, resembling psoriasis.
  • This form of lupus is particularly associated with antibodies in the blood to the Ro protein (mentioned above).
  • SCLE tends to heal over weeks or months and is usually non-scarring.
  • It frequently comes back after more sun exposure.

Both SCLE and DLE may occur on their own without the presence of systemic lupus.  Although systemic lupus occasionally develops in people who first have DLE or SCLE, it tends to be a milder illness than the usual form of SLE.

Topical steroids

Slather on the steroids!

A Lupus Foundation of America research report about a new drug, Efalizumab, in the Treatment of Discoid Lupus Erythematosus discusses the following about discoid lupus.

Discoid lupus is a form of lupus that affects the skin (cutaneous lupus). In most cases the discoid lupus rash appears on the face, neck, or scalp, though it can also show up on other areas of the skin. Severe discoid lupus may result in scarring. The treatments that are used most often for severe discoid lupus are strong immunosuppressants that may have significant side effects, especially when used over long periods of time.

A search on for drugs used to treat discoid lupus, returned a list that included oral Plaquenil/hydroxychloroquine (brand name/generic,) Thalomid, and Thalidomide, the injectable drugs Kenalog, triamcinolone acetonide and Aristospan Intralesional, and a very long list of 106 different topical steroid medications for application to the lupus discoid skin lesions.

Drugs for Cutaneous Lupus

Thalidomide is a drug that has a strong negative stigma about its known relationship to birth defects in the babies of women who used it during pregnancy for their morning sickness. It has been found to be effective in treating some cases of lupus.

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.

Lupus and it’s mascot: butterfly or wolf?

Butterfly: Lupus facial rashes resemble the shape of a butterfly on the cheeks

What is the mascot of systemic lupus erythematosus?  Lupus has long had a couple of unofficial mascots, the butterfly and the wolf.  The butterfly makes a good mascot, because of the butterfly shaped rash that often appears on the face of many lupus patients, and that is a hallmark sign of lupus. My lupus mascot is a butterfly!

However, many have suggested a wolf as the mascot for lupus, since that is where the term “lupus” actually comes from.  The lupus connection to the canine name stems from the shape of the circular rashes on the skin of lupus patients. Often, these are similar to the shape and appearance of a wolf bite, hence the term “lupus” has always been commonly used to describe this autoimmune illness.

Butterflies get my vote as mascot!  Why?  Because the butterfly is a beautiful thing, fragile at times, but none the less it soars in the sunlight, dances among the garden flowers, and represents spring and new life and vitality.  The butterfly emerges from the dark confines of a cocoon, transformed into a beautiful graceful being, like a lupus patient emerging from the confines and limits of a long difficult flare.

So many lupus patients are beautiful and strong, they live with many challenges and embrace their lupus adventure with zest and courage, living their lives with joy, despite lupus. So many lupus patients are not undone by their disease, and it is those people who our lupus mascot should celebrate and represent. You can meet some of these amazing men and women by visiting their blogs listed on my Great Lupus Blogs page.

Wolf: Lupus discoid rashes resemble a wolf’s bite

A wolf, however, has somewhat a more sinister reputation.  Perhaps much deserved and properly well-representing the darker very real side of lupus.  However, I choose not to celebrate the dangers, miseries and pain of lupus, although they are important to realize and contend with.  I choose to focus on the beauty of each lupus patient, and being as “free as a butterfly” from lupus controlling my life.

Those of us with lupus can strive to rise above the negative parts of living with lupus, and refuse to let it dominate and destroy our quality of life.  We cannot make it go away, but we can come to terms with it, proactively manage it, and celebrate what we have versus what we may have lost to the disease.  I choose to focus on how well I can fly!

What would you vote for as the lupus mascot?  wolf, butterfly, or something else?

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