Fantastic Little Snowflakes, Each and Every One


We are all as different as snowflakes-Tala has such a command of the “right words” to express what all us “chronics” feel. Managing life with any chronic disease is stressful enough-but before you decide what someone ELSE should do for their conditions, please READ THIS! You Go Tala!

Tala's Reflections

Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t!  The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all.  We’re not special.

Here are some remarks I ran into on a popular page this morning that set me off:

I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea. 

[My thought on this is that someone is lying.  You NEED to exercise, and unless you are a quadriplegic, you have no excuses.  It doesn’t matter whether that means just taking a walk, or raising your arms over your head a…

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Planting the Seeds for Treating LUPUS!


Findings Give Hope to Plant Extract as Possible Lupus Treatment VIDEO: New diagnostic criteria catch systemic lupus earlier!

LAS VEGAS – New diagnostic criteria from the Systemic Lupus International Collaborating Clinics make the difficult task of diagnosing systemic lupus easier.

SLICC’s criteria are meant to supplant years-old criteria from the American College of Rheumatology. The SLICC criteria cast a wider net, without sacrificing specificity (Arthritis Rheum. 2012;64:2677-86).

SLICC coauthor Dr. Susan Manzi, chair of the department of medicine in the Allegheny Health Network and director of the Lupus Center of Excellence, both in Pittsburgh, explained how the new criteria work, and why they are an improvement.

At the conference held by Global Academy for Medical Education (GAME), she also explained why antinuclear antibody – “the lupus test” – isn’t completely reliable when diagnosing the disease.

Check out the Video HERE! 

More from Skin & Allergy News HERE!

Posted in Uncategorized.

Learning how to not be “RASH”! My pemphigus/pemphigoid story-

How skin falls apart: The pathology of autoimmune skin disease is revealed at the nanoscale – UoB study of pemphigoid rashes discovered new details of how autoantibodies destroy healthy cells in skin! 

This information provides new insights into autoimmune mechanisms in general and could help develop and screen treatments for patients suffering from all autoimmune diseases, estimated to affect 5-10 percent of the U.S. population.

The study of pemphigoid rashes is of interest to people like me, who get these types of rashes-here’s a pic of me with one-

My Pemphigoid Rash

My Pemphigoid Rash

It hurt, felt like my skin was pulling, then it seeped clear white blood cells.  I could actually smell them!  (Yuk, right?)  It took quite a while to heal completely.  It took about 5 months to completely heal.  It did not leave any discolored skin. I used betamethazone to heal it.  A stronger type of steroid cream &/or a steroid shot right into the rash would have probably healed it faster, but I didn’t know that then.  I had this rash Feb 2013. It popped in right after a radiofrequency ablation to my cervical spine for cervical spondylitis & radiculopathy right at the shot site!  Imagine that-Lupus stopping by to say hello just because I had a shot there-(how nice….NOT!  lol)

I’ve only had one pemphigoid type rash since, and it was a small one.  Since being treated for lupus with Cellcept (mycophenalate) my rashes (discoid, pemphigoid, porphyria, urticaria) have all been minimal.  Much less severe!!!  Of course now I stay in as much as possible, it’s the only real way to minimize the rashes.  Don’t go out during the day!


UB research could lead to method for identifying individuals at risk and to screening novel medications

BUFFALO, N.Y. – University at Buffalo researchers and colleagues studying a rare, blistering disease have discovered new details of how autoantibodies destroy healthy cells in skin.  This information provides new insights into autoimmune mechanisms in general and could help develop and screen treatments for patients suffering from all autoimmune diseases, estimated to affect 5-10 percent of the U.S. population. –

The research, published in PLoS One on Sept. 8, has the potential to help clinicians identify who may be at risk for developing Pemphigus vulgaris (PV), an autoimmune skin disorder, by distinguishing pathogenic (disease-causing) autoimmune antibodies from other nonpathogenic autoimmune antibodies. – See more at:

MORE HERE from the University of Buffalo-


Here’s some info on Pemphigoid Rashes!


Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa.

The condition tends to persist for months or years with periods of exacerbation and remission. Localized variants of the condition have been reported, most often limited to the lower extremities and usually affecting women.


There are two predominant types of pemphigoid: mucous membrane pemphigoid (MMP) also called cicatricial pemphigoid, and bullous pemphigoid (BP) (g). Pathogenesis and management are quite different for these conditions. Scar formation in mucous membrane pemphigoid can lead to major disability (g).

Pemphigoid gestationis

Pemphigoid gestationis (PG) is a rare autoimmune bullous dermatosis of pregnancy. The disease was originally named herpes gestationis on the basis of the morphological herpetiform feature of the blisters, but this term is a misnomer because PG is not related to or associated with any active or prior herpes virus infection (h). PG typically manifests during late pregnancy, with an abrupt onset of extremely pruritic urticarial papules and blisters on the abdomen and trunk, but lesions may appear any time during pregnancy, and dramatic flares can occur at or immediately after delivery. PG usually resolves spontaneously within weeks to months after delivery.


Bullous Pemphigoid:

  • BP is the most frequent blistering disease of the skin (and mucosa) affecting typically the elderly (>65 years) (k), but can occur at any age and in any race.
  • Overall incidence: ± 7-10 new cases per million inhabitants per year.
  • After the age of 70 incidence significantly increases.
  • Relative risk for patients > 90 y have a 300-fold higher than those < 60 y.
  • Women and men equally afflicted.
  • Precipitating factors include trauma, burns, ionizing radiation, ultraviolet light, and certain drugs such as neuroleptics and diuretics, particularly lasix (furosemide), thiazides, and aldosterone antagonists.
  • Correlations between BP flare activity and recurrence of underlying cancer suggest such an association in some patients.
  • Even without therapy, BP can be self-limited, resolving after a period of many months to years, but is still a serious condition especially in the elderly.
  • (j) 1-y survival probability may be as high as 88.96% (standard error 5.21%), with a 95% confidence interval (75.6%, 94.2%) but other analyses have documented 1 year mortalities of as much as 25-30% in moderate to severe pemphigus even on therapy (hh).
  • Genetics
    • Genetic predisposition, but not hereditary

Pemphigoid Gestationis:

  • Is a condition of pregnancy (childbearing age women).
  • In the United States, PG has an estimated prevalence of 1 case in 50,000-60,000 pregnancies.
  • No increase in fetal or maternal mortality has been demonstrated, although a greater prevalence of premature and small-for-gestational-age (SGA) babies is associated with PG.
  • Patients with PG have a higher relative prevalence of other autoimmune diseases, including Hashimoto thyroiditis, Graves disease, and pernicious anemia.


The earliest lesion of BP is a blister arising in the lamina lucida, between the basal membrane of keratinocytes and the lamina densa. This is associated with loss of anchoring filaments and hemidesmosomes. Histologically, there is a superficial inflammatory cell infiltrate and a subepidermal blister without necrotic keratinocytes. The infiltrate consists of lymphocytes and histiocytes and is particularly rich in eosinophils. There is no scarring.

Approximately 70% to 80% of patients with active BP have circulating antibodies to one or more basement membrane zone antigens.

  • Autoantibodies to BP180 (and BP230).
  • BP180 and BP230 are two components of hemidesmosomes, junctional adhesion complexes.
  • T cell autoreactive response to BP180 and BP230 regulate autoantibody production (l).
  • On direct immunofluorescence, the antibodies are deposited in a thin linear pattern; and on immune electron microscopy, they are present in the lamina lucida. (By contrast, the antibodies to basement membrane zone antigens that are present in cutaneous lupus erythematosus are deposited in a granular pattern).

Clinical Features


Bullous Pemphigoid (BP) is subepidermal blistering autoimmune disease primarily affects the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Mucous membrane involvement is seen in 10%-40% of patients. The disease tends to persist for months or years with periods of exacerbation and remission.

The spectrum of presentations is extremely broad (l), but typically there is an itchy eruption with widespread blistering, and tense vesicles and bulla (blisters), with clear fluid (can be hemorrhagic) on apparently normal or slightly erythematous skin.

Lesions normally appear on the torso and flexures, particularly on the inner thighs. Blisters can range in size from a few millimeters to several centimeters, and although. pruritic, typically heal without scarring.

Sometimes erosions and crusting is seen. Also itchy bumps (papules) and crusts (plaques) can be seen with an annular or figurate pattern. A characteristic feature is that multiple bullae usually arise from large (palm-sized or larger), irregular, urticarial plaques. (r) Mucosal (oral, ocular, genital) involvement is also sometimes present, but ocular involvement, is rare. (s) BP can be difficult to diagnose in its ‘non-blistering’ stage, when just itchy, red, elevated patches are visible. Erosions are much less common than in pemphigus, and the Nikolsky sign is negative.

BP is characterized by spontaneous remissions followed by flares in disease activity that can persist for years. Even without therapy, BP is often self-limited, resolving after a period of many months to years, but may become very extensive.

Localized variants of the disease have been reported, most often limited to the lower extremities and usually affecting women. One such variant, localized vulvar pemphigoid, reported in girls aged 6 months to 8 years, presents with recurrent vulvar vesicles and ulcerations that do not result in scarring (t)

Bullous pemphigoid is distinguished from other blistering skin diseases, such as linear IgA dermatosis, epidermolysis bullosa acquisita, and cicatricial pemphigoid, by the following 4 clinical items (it can also be distinguished by biopsy and certain immunological tests) (u)

  • Absence of atrophic scars;
  • Absence of head and neck involvement;
  • Relative absence of mucosal involvement.

Mucous membrane pemphigoid

Mucous membrane pemphigoid (MMP) is a chronic autoimmune disorder characterized by blistering lesions that primarily affect the various mucous membranes of the body, but also affects the skin (MMP is now the preferred term for lesions only involving the mucosa) (v). It is also known as Cicatricial Pemphigoid (CP), as it is often scarring.

The mucous membranes of the mouth and eyes are most often affected, but those of the nose, throat, genitalia, and anus may also be affected. The symptoms of MMP vary among affected individuals depending upon the specific site(s) involved and the progression of the disease. Disease onset is usually between 40 and 70 years and oral lesions are seen as the initial manifestation of the disease in about two thirds of the cases. Blistering lesions eventually heal, sometimes with scarring. Progressive scarring may potentially lead to serious complications affecting the eyes and throat.

There is no racial or ethnic predilection although most studies have demonstrated a female to male ratio of approximately 2:1 (w). The diagnosis of MMP is mainly based on history, clinical examination and biopsy of the lesions.

More on Pemphigoid Rashes from the Pemphigus & Pemphigoid Foundation HERE!


SUNday “SUNlutions”: UV Exposure with Lupus; What you need to know!


malarrash - Copy  julierashesall IMG_20130130_164207(4)

  The SUN:  Sunshine on my shoulder does not make me happy!  LOL- Some of us with lupus are very sensitive to UV rays from the sun.  Our bodies respond to the sun as an attack-and send too many fighter cells to the skin that overdrives our immune system and causes damage.  I personally break out in itchy hives, vascular lesions, pemphigoid rashes, discoid spots, red hot malar rashes, scleroderma skin hardening and & it takes me months to recover.

Also-later our bodies cannot get rid of the dead cells-it’s a slow process-not the kind of recovery after sunburn kind of thing.  My solution?  Stay inside as much as possible.  I picked up a titanium umbrella at  Here is some info from the LFA on the importance of being safe in the SUN!

UV Exposure: What You Need to Know

By Stephanie Watson

We talk a lot about the damaging effects of the sun’s ultraviolet (UV) rays. And we know how to protect ourselves outside with wide-brimmed hats, garments made from sun-protective- fabric, and, of course, sunscreen. But for some people with lupus, whether they’re walking through a supermarket or sitting in an office, the UV exposure from artificial light can be just as damaging and painful as too much time outside in the sun.

That’s why Hanan Hameen-Smith covers her skin in sunscreen and cloaks herself from head to foot in clothing when she leaves her house. “When I go to the gym for physical therapy, I have to wear sunglasses and a hat,” says the 33-year-old dance teacher, who lives in New Haven, CT. This elaborate costume often makes onlookers stare, she says. At home, she keeps the blinds closed and the lights dimmed. Turning off the lights and closing the blinds aren’t options when she teaches, so Hameen-Smith wears a hat then, too.

Hameen-Smith has lived under these conditions since 2010, when she was diagnosed with lupus. The disease has triggered a photosensitivity so severe that any exposure to UV light leaves a red, itchy rash on her skin. “It’s changed my whole life,” she says.

Why So Sensitive?

Exposure to UV light causes damage to everyone’s cellular DNA, explains Sabrina Newman, M.D., assistant professor of dermatology and internal medicine at George Washington University in Washington, DC. “UV radiation is what causes cell damage, regardless of whether it’s coming from the sun or a lamp,” she says.

It’s what happens next that differs. “In people with lupus, the cells are much more sensitive to the damage caused by UV radiation,” Newman says. “Once the cells are damaged, the immune system clears them, but people with lupus have a much slower clearance of these cells.”

The dead cells stick around in the body, triggering an immune system attack. “We have antibodies in our immune systems that typically are used to fight infection. But in people with lupus, the antibodies wrongly target proteins within normal cells and cause an immune reaction,” explains Benjamin Chong, M.D., assistant professor in the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas.

And photosensitivity is common in people with lupus: 40 percent to 70 percent of people with lupus will find that their disease is made worse by exposure to UV rays from sunlight or artificial light. Although the sun emits much larger amounts of UV radiation than indoor light, most people—especially those with lupus—tend to spend more time indoors, where they’re exposed for longer periods of time.

That’s not all: UV light can also activate lupus flares, triggering symptoms like fatigue, joint pain, tingling, and numbness.

When Ellen Schnakenberg ventures outside, her skin breaks out in a sunburn-like rash from UV exposure. Then she gets so ill that she has to retreat to her bed. “I’ll have a flare that will last for a couple of days to several weeks,” says the 49-year-old from Unionville, MO.

Cover Up

If UV light flares your lupus, you want to create a barrier between you and it:

  • Apply a liberal layer of a 30 SPF or higher sunscreen, one that provides broad-spectrum- protection against both UVA and UVB rays.
  • Wear tightly woven clothing that covers your skin, a wide-brimmed hat, and wraparound sunglasses to protect you from head to toe.
  • Choose light bulbs that have the lowest possible irradiance (intensity).
  • Cover fluorescent and halogen bulbs with light shields or glass that filters out UV rays. Look for shields with readings of 380 to 400 nanometers, which filters all types of ultraviolet light.
  • Use UV-blocking shades to cover windows and prevent sunlight from streaming in.
  • Consider tinting the windows of your car—check state laws on window tinting to see if a doctor’s note is required.

Cause and Effect

Some medicines can make you more photosensitive, too. Talk to your pharmacist or physician about the drugs you’re taking, especially:

  • Antibiotics, such as doxycycline (Doryx®) and tetracycline (Ala-Tet®, Panmycin®, Sumycin®)
  • Anti-inflammatory drugs, such as ibuprofen (Advil®, Midol®, Motrin®, Nuprin®)
  • Blood pressure medications, such as hydrochlorthiazide (HydroDIURIL®, Microzide®) and lisinopril (Prinivil®)

Methotrexate can also make some people more UV-sensitive. Yet stopping this medicine if it’s helping your lupus can be tricky. “That’s something you’d need to discuss with your doctor,” Chong says.

Another lupus medicine has the opposite effect. “Hydroxychloroquine (Plaquenil®) is actually protective,” Newman says. “Doctors will prescribe it for people who have photosensitivity.”

Change It Up

When you’re photosensitive, life requires a few modifications. Hameen-Smith has done everything from changing her sunglasses prescription to putting lower-wattage light bulbs in all of the lamps in her home. Tee Brown, 44, asked the Oklahoma City Fire Training Center, where she works as an office specialist, to make a few alterations to limit her exposure. Diagnosed with lupus and fibromyalgia in mid-2012, she noticed that the lights in her office were causing headaches and problems with her vision while working on her computer. “One of the solutions was to take out some of the lights above my desk,” she says. “It has worked a little bit, but not 100 percent.”

Schnakenberg also does what she can. She wears UV-protective long-sleeved shirts and pants, and she puts on sunglasses both inside and outside to shield her eyes from UV light. She has also applied UV-protective film to the windows of her house and tinted the windows of her car.

Schnakenberg is even bringing along her own incandescent light bulbs when she and her husband take a 30th-anniversary cruise to Alaska this summer. “You can’t stop life. You have to make choices,” she says. “I pick and choose the things I do, knowing there will be a price to pay, but hoping the price won’t be too high.”

More at the Lupus Foundation of America website HERE