"Bewildered" Courtesy www.rosemaryharris.net

Copyright 2010 by Brady Barrows

According to David Pascoe rosacea isn’t confusing, mysterious, or bewildering at all. David Pascoe seems to have rosacea all nicely packaged into one coherent solution with his sponsored web sites containing hundreds of editorials and news items with two rosacea online groups that number into the thousands who are no longer confused or bewildered at all about rosacea under his guidance. In an article in the NY Times, “In a Perfect World, Rosacea Remains a Problem,” Pascoe is reported to have “used various topical gels and antibiotics for 15 years, but he remained a “Rudolph,” and now has it all under control and rosacea is no longer a mystery to him any more and says that anyone who says rosacea is mysterious, confusing and a bewilderment simply doesn’t know what they are talking about.

After all, David is the founder of Rosacea Support and states emphatically, “Rosacea cannot honestly be characterised as a baffling condition.” [1] Is this true?  Rosaceans are not baffled by rosacea and do not find rosacea mysterious or confusing?  What do you think?

First, the cause of rosacea is still unknown, and second, the cure is not available yet. Not everyone agrees with Pascoe and here are a few quotes what others say about rosacea’s mystery, confusion and bewilderment:

“Rosacea is a complex and often misdiagnosed condition.” [2]

“”Rosacea is a skin condition as misunderstood as sensitive skin..” [3]

“”Rosacea is a very common, but often misunderstood…” [4]

“Although the basic pathophysiologic aspects of this enigmatic disorder remain mysterious, our ability to improve and control it is increasing…” [5]

“Rosacea is a mysterious skin disorder affecting tens of millions of individuals worldwide.” [6]

“Despite being common, acne rosacea remains mysterious.” [7]

“Rosacea, also referred to as acne rosacea, is a mysterious and chronic disorder of the skin.” [8]

“One of the most “mysterious” skin conditions is rosacea. Even experts know very little about rosacea…” [9]“

“As if today’s economy were not stressful enough, growing millions of Americans now face the embarrassment of a mysterious red-faced disorder that can wreak havoc on their emotional, social and professional lives……’The early clues to rosacea are confusing for many people because the signs and symptoms often come and go, and are easily mistaken for something else,’ said Dr. Jonathan Wilkin, chairman of the NRS medical advisory board.” [10]

“What immediately stands out, which may shock the uninitiated, is the striking degree of controversy, conflict, confusion and contradictions, among the thicket of reports from all over the world. The parvenu to rosacea research will likely be puzzled by these quandaries, which may be off-setting to some, but an attraction to those who like to engage in fields where perplexities reign. There are profound disagreements among “experts” who write and talk about rosacea. I state forthrightly that the state of knowledge regarding the classification, pathogenesis, diagnosis and treatment of rosacea is embarrassing, if not scandalous, when compared to the impressive advances in all other fields of dermatologic research.”—Albert Kligman, M.D.  [11]

There are many other statements that many feel rosacea is indeed mysterious and baffling. The confusion about rosacea is discussed almost daily in the rosacea online rosacea groups and experts remark how rosacea is often confused with acne and other skin conditions. Does everyone who is searching the internet online for web sites on rosacea as well as posting in all the online rosacea groups and forums understand completely everything about their rosacea? Do they report successful visits from dermatologists, never complain about the diagnosis, are completely satisfied with the treatment, and are never bewildered or frustrated or confused about rosacea?  Do all the dermatologists and physicians know everything about rosacea? What you think?  Do you agree with David Pascoe that there is no confusion, mystery and bewilderment with rosacea? Yet that is what he wrote when slamming my editorial in the Journal of the RRDi:

“The Associate Editor, Brady Barrows, says that there is a “mystery and bewilderment surrounding rosacea that baffles not only the experts but also those suffering with this disease.” This is a tired statement that is regularly peddled by Barrows. I find this egregious on 2 fronts. Firstly it is patently false and secondly this statement becomes self-fulfilling with the poor quality of some of the articles that follow in the journal. Rosacea cannot honestly be characterised as a baffling condition…” [1]

Do you agree with David that what I wrote is ‘false’ and rosacea cannot be ‘baffling’ ?

A recent survey sponsored by Galderma/NRS  says rosacea is a ‘complicated diagnosis path.’  Note the statement:

“The results, which are part of the national educational campaign Rosacea SKINsights sponsored by Galderma Laboratories, also reveal the lengths that women with rosacea would go to if they could get rid of their rosacea forever, and highlight the low awareness and complicated diagnosis path for this common condition.” [12]

Some think that rosacea isn’t a complicated diagnosis path at all and would have us believe otherwise and I responded to such remarks here. As to what might be considered in diagnosing rosacea it isn’t as simple as some might want to believe. Every week in the rosacea online groups newbies arrive and ask the question, ‘Is this rosacea?’ along with images of their face expecting a simple diagnosis. They are told over and over again that online diagnosis is impossible and to find a dermatologist to diagnose their condition. To say that rosacea is a simple diagnosis would negate all the work of the NRS ‘expert committee’ who has standardized and classified rosacea. The NRS ‘Expert’ Committee said one of the reasons for standardizing and classifying rosacea is because ‘the term “rosacea” has been applied to patients and research subjects with a diverse set of clinical findings that may or may not be an integral part of this disorder.” [13]

The NRS ‘expert committee’ had this to say about the nosology of rosacea:

“Despite its apparent high incidence, the nosology of rosacea is not well established, and the term “rosacea” has been applied to patients and research subjects with a diverse set of clinical findings that may or may not be an integral part of this disorder. In addition to the diversity of clinical manifestations, the etiology and pathogenesis of rosacea are unknown, and there are no histologic or serologic markers.

Therefore, the National Rosacea Society assembled a committee to develop a standard classification system that can serve as a diagnostic instrument to investigate the manifestations and relationships of the several subtypes and potential variants of rosacea. Standard criteria for diagnosis and classification of patients are essential to perform research, analyze results and compare data from different sources, and may further serve as a diagnostic reference in clinical practice. The standard terminology will also facilitate clear communication among a broad range of basic, clinical, and other researchers; practicing dermatologists, primary care physicians, ophthalmologists and other specialists; health and insurance administrators; and patients and the general public.

The committee based the standard classification system on present scientific knowledge and morphologic characteristics. This avoids assumptions on pathogenesis and progression, and provides a framework that can be readily updated and expanded as new discoveries are made. As knowledge increases, it is hoped that the definition of rosacea may ultimately be based on causality, rather than on morphology alone.” [13]

What the ‘expert committee’ did was to classify rosacea into subtypes and one variant and to help physicians diagnose rosacea better which is now beginning to help. Dermatologists who are aware of this new classification system are better informed than in the past but as the above report acknowledges, this ‘provides a framework that can be readily updated and expanded as new discoveries are made’ and that the “definition of rosacea may ultimately be based on causality, rather than on morphology alone.”  [14] We are still on the road to understanding this mysterious disorder. Yes there is improvement. But to say that the book is closed on rosacea and it is no longer confusing, baffling and mysterious is a disservice to the rosacea community. We need more knowledge and research on rosacea.  Not everyone agrees with David Pascoe despite his large following.

More recent examples to consider such as the following article, The Rosacea Dilemma, which states:

“Unfortunately, the pathogenesis of rosacea is still a mystery…..Unfortunately, rosacea tends to wax and wane despite therapy.” [15]

The article, “We are making progress with both acne and rosacea–but, let’s face it! We still have a long way to go.” [16]

Sources

[1] RRDi journal Issue 1 Review: an unfortunate mix
an editorial by David Pascoe

[2] The Rosacea Forum Moderated by Drs. Bernstein and Geronemus

[3] Dermilogica

[4] skinlaboratory.com

[5] Unraveling the mystery of rosacea. Keys to getting the red out.
Postgrad Med. 2002 Dec;112(6):51-8, 82; quiz 9.
Landow K., University of Southern California School of Medicine, Los Angeles, USA.

[6] Possible Causes of Rosacea
This Little Understood Skin Disease Is Not Curable, But Treatable

[7] Acne Rosacea
By Ruth Werner, LMP, NCTMB

[8] Nursing Comments

[9] Rosacea Care for Clear Skin

[10] NRS
Untold Millions Suffer Embarrassment of Conspicuous Red-Faced Disorder

[11] A Personal Critique on the State of Knowledge of Rosacea Albert M. Kligman , M.D., Ph.D.
Department of Dermatology, University of Pennsylvania, Philadelphia, PA, U.S.A.

[12] New Survey Reveals First Impressions May Not Always Be Rosy For People With The Widespread Skin Condition Rosacea
Medical News Today

[13] Standard classification of rosacea:
Report of the National Rosacea Society Expert Committee on the Classification and Staging of Rosacea

[14] Morphology of Rosacea

[15] Healthy Aging
The Rosacea Dilemma
Physicians are still not sure what causes rosacea, requiring them to tailor treatment plans to each symptom.
Arisa Ortiz, MD
Posted on: July 14, 2009

[16] We are making progress with both acne and rosacea–but, let’s face it! We still have a long way to go.
Del Rosso JQ.
J Drugs Dermatol. 2010 Jun;9(6):603-4.

Copyright 2010 Brady Barrows

Obtaining a diagnosis for rosacea may seem to be fairly straight forward but considering that there are reports of misdiagnosis it would be good for rosaceans to be educated on this subject so that if one experiences a misdiagnosis it will not be a surprise and will understand better how a diagnosis is obtained. A recent survey by Galderma/NRS says that the results “highlight the low awareness and complicated diagnosis path for this common condition.”

First and foremost is that diagnosis is the sole prerogative legally and ethically of a physician. So the information in this editorial is not meant to substitute or replace a physician’s diagnosis but is simply for a rosacea sufferer to understand the subject of a rosacea diagnosis for educational purposes. Knowing what is involved in obtaining a diagnosis of rosacea is quite helpful in basic Rosacea 101 which is a subject I am quite familiar with and wish to pass on this information freely to those who wish to increase their rosacea knowledge.

There is no histological, serological or other diagnostic tests for rosacea and a diagnosis is simply arrived at by a patient history and physical examination. [1] Some clinical tests may be done, i.e., blood tests and skin biopsies, to rule out rosacea mimics. The NRS Classification System into subtypes and one variant is the first clearly defined proposal to identify and classify rosacea. [2] It is of interest to note that this classification system is based on morphology rather than causality. Understanding this classification and variant system is the beginning of a nosology for this disease. Dermatologists who are keeping up with this new classification system are now able to better diagnose rosacea. It may be that your physician is familiar with this new classification system but some physicians are not keeping up with this latest system and may be relying on past knowledge on this subject.

Physical Examination & Tests

Frank Powell, MD, who served on the NRS ‘expert committee‘ that classified rosacea says in his book, “There is no laboratory test or investigation that will confirm the diagnosis of PPR. Specific investigations may be required to rule out similar appearing conditions (many of which will be identified by listening carefully to the patient’s medical history and examining the skin lesions). These include skin swabs for bacterial culture, skin scrapings for the presence of demodex mites, scrapings for fungal KOH and fungal culture, skin biopsy for histologic examination, (and rarely culture) skin surface biopsy for demodex mite quantification, patch tests, photopatch tests, and very rarely systemic workup wih appropriate blood tests and radiological examinations.” [3]

To rule out demodectic rosacea “Potassium hydroxide examination, standardized skin surface biopsy, skin biopsy, or a combination of these are essential to establish the diagnosis.” [4]

In some cases to rule out other rosacea mimics such as lupus and scleroderma it is suggested that obtaining an ANA blood test and other blood tests might be considred. [5] Another test you might consider having is the Autologous serum skin test (ASST) to rule out chronic uticaria.

One report says it is necessary to perform individual bacterial cultures and antibiograms on rosacea patients.

Another report suggests testing mucin to differentiate lupus.

Another test to consider is to rule out Grave’s disease with blood tests. According to Ladonna, “…my husband took me to the dermatologist and she said it was Rosacea and couldnt be anything but….So he took me to many doctors, and finally a wonderful doctor took a shot in the dark blood test and discovered my problem. Later more involved tests and scans confirmed it. I was Hyperthyroid…specifically Graves Disease…”

So from the above tests it shows that a five minute visit to your dermatologist who simply diagnoses you with rosacea and doesn’t take any of the tests mentioned above to differentiate other rosacea mimics might mean you could receive a misdiagnosis. There is anecdotal evidence that many rosaceans report a quick diagnosis in five minutes or less.

More info on Misdiagnosed Rosacea

Taking a Patient History

In Powell’s last chapter, [3] entitled, General Considerations, he suggests asking questions to the patient in taking a history, specifically:

(1) Asking about polycythemia?

(2) Whether the patient has been using a steroid cream?

(3) Any other medication such as niacin or antacids?

(4) Whether there has been any frequent flushing?

(5) Any complementary or alternative medicines, i.e., herbal products?

(6) Eye symptoms?

(7) Any family history of rosacea?

If you physician neglects to ask any of the above questions you might simply bring the above answers to these questions to his attention in a respectful tone so that a proper diagnosis of your skin condition can be obtained. Not knowing the answers to the above questions may hinder a proper diagnosis.

As more information on diagnosis is discovered that is pertinent to this article it will be updated.

References

[1] National Rosacea Society, Answer to Question 5
http://www.rosacea.org/patients/faq.php#test

[2] Classification of Rosacea
http://www.rosacea.org/class/classysystem.php

[3] Rosacea Diagnosis and Management by Frank Powell
with a Contribution by Jonathan Wilkin

[4] Demodicosis: a clinicopathological study.
Hsu CK, Hsu MM, Lee JY.
J Am Acad Dermatol. 2009 Mar;60(3):453-62

[5] Scroll to Alba’s Post #6 about ANA Blood Tests

Rosacea Diagnosis and Management by Frank Powell
with a Contribution by Jonathan Wilkin

A Book Review by Brady Barrows

This book is designed with physicians in mind and is full of a wonderful mixture of  color illustrations of nineteenth century artists along with the author’s own modern color photographs of his patients. Powell points out the  ’great detail that the dermatologists of a former era paid to describing and illustrating this condition.”

Even though this book is not designed for laymen like myself, I found the book fairly easy to understand and insightful and learned a great deal which I will detail in this review.  Dr. Powell’s book is, as he says, “not intended to be an in-depth study of this disease,” but to “fill the gap that texbooks leave in the provisions of solutions for individual patients with rosacea who often require their clinicians to be innovative in the approach to the management of their skin conditions.”

Powell confirms how rosacea’s definition has been vague, that the etiology is unknown, yet suggests that ultraviolet light may be the culprit underlying the various pathogenic theories surrounding rosacea.  He lauds the new NRS classification of rosacea into subsets and discusses details of rosacea into these subsets using a grading system to select therapies, devoting a chapter on this subject.

One new thought to me is his mention of the ‘lactic acid test’ for skin sensitivity to assess and grade a patient using this tool. A whole chapter is devoted to skin structure and function.  His chapter on Flushing and Blushing confirms what other clinicians have found that while both are seen ‘sufficiently often enough’ in rosacea patients and both flushing and/or blushing  are the ‘first features of rosacea to appear in some patients,” nevertheless, “flushing and blushing are not necessarily a component of the clinical picture in all patients with rosacea.”  He explains the only difference between flushing and blushing are the “different conditions which disparate initiating factors.”  Flushing may be initiated by many factors other than emotional or psychological. Blushing is initiated by emotional and psychological factors. He does admit that there are ‘crossovers in the distribution of flushing and blushing’ and that flushing is more widespread. He goes into some detail how Charles Darwin wrote much about the subject of blushing which resulted in the public psyche associating ‘facial reddening and emotions’ leading to ‘some curious theories relating to the etiology of rosacea.’

One matter Dr. Powell clears up is the notion that individuals with sensitive skin and who flush frequently should be classified as ‘pre-rosacea.’  He points out that the evidence is lacking for this theory mainly because of the ‘lack of [a] clear definition of both rosacea and the type of facial reaction that constitute[s] facial flushing or blushing.’  Powell makes the point that rosacea may be the result of irritating effects of the environment rather than the effects of frequent flushing.

A whole chapter is devoted on the classification and grading the severity of rosacea. He points out the benefits of clinicians accepting a ‘common recognition of which subtype within the rosacea spectrum’ and how this classificaion also facilitates management of treatment which is ‘largely dictated by which subtype of rosacea’ the patient represents. One clarification worth noting is how he explains that the NRS ‘expert committee’ did not imply ‘a pathogenesis or progression of the disorder through various stages.’

The chapter on Subtype 1 (Erythematotelangiectatic [ETTR] Rosacea) shows the difficulty for differentiating it from rosacea mimics, in particular, heliodermatitis. He says that some clinicians use the terms heliodermatitis and ETTR interchangeably.  He thus focuses on differentiating the two conditions. There is much detail also differentiating ETTR with systemic lupus erythematosus (SLE), dermatomyositis, seborrheic dermatitis, atopic dermatitis, other dermatitis, and other rarer conditions. He states that subtype 1 is the most difficult to treat and offers suggestions on its management.

In his chapter on Subtype 2 (Papulopustular [PPR] Rosacea) he says this subtype ‘corresponds most closely to the original concept of rosacea’ and goes into detail about the definition and concludes that this subtype is ‘the easiest type to treat’ and ‘apart from rhinophyma, PPR is the most easily recognized rosacea.’ He gives an interesting short history on past treatments used to treat PPR, for example, ‘reducing the intake of carbohydrates,’ and ‘increasing the quantity of meat.’  He devotes attention to the ‘presence of Demodex folliculorum mites in the facial skin of some patients with rosacea and how ‘these mites are greatly increased in number.’ With many color photos (24 – more than any other chapter)  he devotes details about PPR’s clinical features and then spends a third of the chapter discussing ‘differential diagnosis and investigations.’   First he explains rosaceiform dermatitis (RD) in which ‘D. folliculorum mites are found in abundance in some individuals affected with this disorder.’  Sometimes RD can be “seen in persons who have applied potent topical steroid creams to their faces over prolonged periods and is referred to as ‘steroid induced rosacea-like dermatitis.’ ” These patients ‘have also been shown to have a major increase in the demodex mite count on heir facial skin using the cyanoacrylate skin biopsy technique.’  Other differential diagnosis is discussed differentiating PPR from acne vulgaris, perioral dermatitis, seborrheic dermatitis, and pityriasis folliculorlum (PF).  Dr. Powell goes into some details describing PF.  “Pityriasis folliculorum is an often over-looked clinical entity”  and cases are ‘mostly female.’  He explains that there is ‘usually a history of rarely using soap or water to cleanse the facial skin but instead using cleansing creams.’  These individuals often apply moisturizers and complain of a burning or itchy sensation.  He states that the diagnosis of PF is ‘facilitated by use of dermatoscopy, which shows a distinctive picture of the presence of multiple white keratotic material consisting of keratin encrusted demodex mites protruding upwards from the follicular orifices.’  This condition ‘seems to be caused by an over population of mites facilitated by the frequent use of creams and the lack of face washing with soap and water.’

Another discussion focuses on Tinea Faciei and cutaneous sarcoid differentiating these from PPR.  A very important note for clinicians is found on the last paragraph of page 82 in his book:

“There is no laboratory test or investigation that will confirm the diagnosis of PPR. Specific investigations may be required to rule out similar appearing conditions (many of which will be identified by listening carefully to the patient’s medical history and examining the skin lesions).  These include skin swabs for bacterial culture, skin scrapings for the presence of demodex mites, scrapings for fungal KOH and fungal culture, skin biopsy for histologic examination, (and rarely culture) skin surface biopsy for demodex mite quantification, patch tests, photopatch tests, and very rarely systemic workup wih appropriate blood tests and radiological examinations.”

How many dermatologists do you know do such a detailed history and examination?  When you were diagnosed with rosacea, did your physician come close to what is mentioned in the above paragraph?  I would suggest buying this book and just having your dermatologist read the above paragraph by handing it to him at the end of your initial visit and insist on getting it back, also suggesting to the physician it is available at amazon and more rosacea patients are going to be walking in who have read this book. It might be an eye opener for some dermatologists.  Keeping up with rosacea is what Dr. Powell’s book is all about.

Powell devotes the rest of the chapter with management of PPR with a cool algorithm figure for dermatologists to use.

His chapter on Phymatous (Subtype 3) is also full of photos (14) and notes that while it is a rare malady with a ‘predilection for male patients’ occurs ’20 times more commonly in male patients.’ He goes into detail abut six different types of rhinophyma and clearly states that while most literature in the past suggests this condition is the end stage of rosacea that this is not true. Rhinophyma can occur with ‘little (or even no) preceding inflammation.’  He ends the chapter with the management of this subtype.

He devotes another chapter on Ocular Rosacea (OR) or Subtype 4. He says that rosacea “is almost unique among the inflammatory dermatoses in that it is often accompanied by ocular inflammation or dysfunction.” This frequency ranges from “20% to 60% depending on whether the findings are being recorded by ‘dermatologists or ophthalmologists.’ “  He goes into great detail with colorful illustrations and photos of the clinical features and makes the point that “most patients do not volunteer any specific complaint related to their eyes when presenting with the skin changes of rosacea. This is because they are usually mild and they do not relate eye symptoms to their skin condition. It therefore behooves the clinician to specifically enquire about ocular symptoms.”  He says that dermatologists should refer the patient to an ophthalmologist to rule out any differential diagnosis since that falls into his speciality.  Again he finishes with detail management treatment.

In the last chapter, entitled, General Considerations, he suggests asking questions to the patient in taking a history, specifically:

(1) Asking about polycythemia?

(2) Whether the patient has been using a steroid cream?

(3) Any other medication such as niacin or antacids?

(4) Whether there has been any frequent flushing?

(5) Any complementary or alternative medicines, i.e., herbal products?

(6) Eye symptoms?

(7) Any family history of rosacea?

Did your physician ask you any or all these questions?  He then goes into some suggestions when taking the physical examination and then some details for applying medications and skin care. For example, his advice is to tell the patient after cleansing with a gentle soap or soap free cleanser to wait 30 minutes before applying the medication and progressively reduce this proceedure as the patient acclimates to the therapy. He emphasizes to tell the patient that ‘drugs have priority – they go on first!’  after sun block or moisturizers.  He also encourages going over cosmetic advice with a table of Do’s and Don’ts.  He mentions caution to clinicians who treat pregnant patients and also a discussion about the rare patient with skin color (Fiztpatrick’s Skin types 4 – 6) with some suggestions.

One interesting suggestion in this chapter he points out that “it is courteous to discuss with the patient what their concept of rosacea is.”   He encourages clinicians to emphasize that rosacea is usually quite controllable and discusses lifestyle factors that may reduce the need for the chronic medication usage by discussing this with the patient. Many rosaceans are concerned about rhinophyma so he mentions it would be good to assure the patient that subtype 3 does not necessarily result from rosacea and this subtype mainly occurs in males which will no doubt relieve female patients. He says it is important to explain to the patient the reason for follow up visits and to reassure the patient that the association of alcohol with rosacea is not valid so as to reduce the stress associated with this misinformation.  He concludes with addressing the social stigma of rosacea and the positive outlook that there is with ongoing research and organizations devoted to improve treatment.

If every rosacean were armed with this book when he visits his dermatologist and with a respectful tone suggest that the dermatologist own a copy and read it that this would probably do more for rosacea patient treatment than anything else at this point in time. I highly recommend this book not only for physicians but if you are on a search to find physician treatment for rosacea this is the book that will help you the most. I predict Dr. Powell will become very popular with rosaceans.

Brady Barrows

click on the image below if you want a copy: