Journal of the Rosacea Research & Development Institute
Volume 1, No. 1.

This journal is the first of its kind, being totally produced by volunteer rosaceans. I am the associate editor and along with Joanne Whitehead, Ph.D., who is the editor in chief, this journal was two years in the making. It is now available at iUniverse and Amazon. I asked the RRDi MAC members to contribute articles for the inaugural edition and several volunteered to contribute some articles which are interesting and novel. One rosacea sufferer who joined the RRDi also contributed an article on the dietary effect of salt on rosacea.  The proceeds from the sale of this journal will help to continue the journal and find a cure for rosacea. Your purchase of this journal is greatly appreciated.

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.

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] 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.

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 two 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

What's this about?

Digital Davo wrote an interesting editorial on Galderma wanting to control the rosacea market and I posted a remark that I thought his editorial on Galderma was interesting.  Dave then posted this comment after my initial comment:

“The NRS has a list of sponsors that allows the NRS to pursue their educational campaigns. Galderma appears at the top of the list and has been there for many years of course.”

I then posted a comment about the NRS which is shown above and captured a screen shot of it before Dave removed my post above along with his previous comment about the NRS which initiated the above post and was in harmony with his changing the subject to the NRS. Then Dave said I wasn’t allowed to comment on the RRDi or the NRS anymore and removed the above post along with his previous post about the NRS.  Here is my editorial on this topic.

Whenever the subject of trigger avoidance comes up with rosacea usually avoiding spicy food is mentioned. This is due to a 1999 survey conducted by the NRS that is usually referred to as the source of information. How was the survey conducted?

This was not a placebo controlled, double blind controlled study. This was simply a survey of rosacea sufferers who filled out a form and is purely anecdotal. The survey concluded the following according to an article in the JCAD:

“A 1999 survey by the National Rosacea Society of 3,151 rosacea patients determined different food triggers. With regard to alcohol ingestion in rosacea patients, this survey found red wine as the most likely culprit, followed by hard liquor, then beer as the least likely to cause symptoms in patients. With regard to spices, cayenne pepper aggravated rosacea 36 percent of the time, red pepper 34 percent of the time, black pepper 18 percent of the time, white pepper 9 percent of the time, and paprika 9 percent of the time.” [1]

So whenever a physician or anyone says that spicy food is a rosacea trigger they are relying on evidence that is purely anecdotal. While the survey may prove helpful it is by no means a clinical study. Just because 36 percent of the respondents of the survey said they report cayenne pepper as a rosacea trigger doesn’t mean that cayenne pepper is a rosacea trigger. All it means is that maybe it is a rosacea trigger since there is no clinical study to prove that indeed cayenne pepper is a rosacea trigger.

What a rosacea suffer needs to remember is that any proposed trigger is simply that, a proposed trigger. What triggers rosacea is an individual thing. Trigger avoidance is not an exact science and while it may prove helpful one must realize its limitations.

Every trigger proposed on the 1999 NRS survey is just a proposed trigger that MAY trigger rosacea. There has never been found one rosacea trigger that in every case produces a rosacea flare up. Not one.

Conclusion: Spicy food may be a rosacea trigger.

Source:

[1] The Role of Diet in Acne and Rosacea
September 2008
by Jonette E. Keri, MD, PhD, and Adena E. Rosenblatt
J Clin Aesthetic Derm. 2008;1(3):22–26

Glyco Mira, LLC says the company received a “SBIR Phase I grant for the development of a treatment for rosacea.” According to Pascoe this may be an “anti-cathelicidin treatment.” We may hear more later this year.

In a related matter, Richard Gallo of cathelicidin fame, has applied for a patent on some rosacea method of treatment below along with the  Regents of UCSD:

Patent application title: METHODS AND COMPOSITIONS FOR THE TREATMENT OF SKIN DISEASES AND DISORDERS

Inventors: Richard L. Gallo Jurgen Schauber Kenshi Yamasaki
Agents: Joseph R. Baker, APC;Gavrilovich, Dodd & Lindsey LLP
Assignees: THE REGENTS OF THE UNIVERSITY OF CALIFORNIA
Origin: SAN DIEGO, CA US
IPC8 Class: AA61K4800FI
USPC Class: 514 44 A
Patent application number: 20090318534
Read more

For More Information on Rosacea Flare Up Triggers

For More information on Flushing Triggers

The other confusion about rosacea triggers is that when a rosacea newbie reads or hears about certain triggers should be avoided from reputable physicians and rosacea organizations they may think that these triggers are set in stone and have been clinically established as absolute triggers. This is far from the truth and actually there has been only one known clinical study on a rosacea trigger done on thermal flushing. All the other proposed rosacea triggers are purely anecdotal. What does ‘anecdotal’ mean?

anecdotal |ˌanikˈdōtl|
adjective
(of an account) not necessarily true or reliable, because based on personal accounts rather than facts or research : while there was much anecdotal evidence there was little hard fact | these claims were purely anecdotal.

When a doctor mentions rosacea triggers based upon a list compiled by the NRS or other source without explaining that triggers are anecdotal it implies to a rosacea newbie that these triggers are set in stone and surely must be true. The truth of the matter is that trigger avoidance isn’t an exact science except for the one trigger that was indeed investigated with the Wilkin report that concluded:

“It is concluded that the active agent causing flushing in coffee at 60 degrees C is heat, not caffeine.”

Oral thermal-induced flushing in erythematotelangiectatic rosacea.
Wilkin JK; J Invest Dermatol. 1981 Jan;76(1):15-8.

If every trigger was investigated as coffee was the list might be reduced. The first three on the NRS list, liver, yogurt and sour cream are an example of how anecdotal this list is:

http://www.rosacea.org/patients/materials/triggers.php

Another survey, which is anecdotal said the the most common triggers were:

Sun exposure
Emotional stress
Hot weather
Wind
Heavy exercise
Alcohol consumption
Hot baths
Cold weather
Spicy foods

http://www.rosacea.org/patients/materials/triggersgraph.php

The above survey listed this as ‘the most common factors’ by percentages and ’spicy foods’ was the eighth most common. Maybe a clinical study will be done on spicy foods eventually.

Non Prescription (Over the Counter [OTC])

How much money is being spent on rosacea? According to a NY Times article, “Sales of anti-redness facial care products grew by 35 percent from 2002 to 2007, an increase of $300 million, according to Kline’s 2007 global cosmetics and toiletries report. That figure, Ms. Wang said, doesn’t include products designed for sensitive skin or uneven complexions, which also purport to quell rosacea.”

This gives you an idea of the market for anti-redness OTC products.

Prescription Treatments

A Market Watch report says “the current size of the U.S. rosacea products market is around $500 million.”

Note this 2004 Business Wire report stated:

“With 85% of people worldwide suffering from acne at some point in their lives, leading to more than 103 million affected by acne and another 45 million by rosacea, the global market for prescription dermatological therapeutics continues to be substantial. Current drugs include a variety of topical and systemic medications such as antibiotics, anti-infectives, anti-inflammatory, hormone therapies, keratolytics, and retinoids–many of which are indicated for both diseases.

The worldwide acne and rosacea therapeutics market is estimated at over $2.16B in 2004 and is expected to grow at a compound annual rate of 1.4% to reach more than $2.31B worldwide by 2009. Although market growth is stabilizing, there is still a pressing demand for new products since most current therapies are associated with adverse side effects including skin irritation, depression, and birth defects.”

There are actual figures provided about this from Mindbranch with their report The Dermatology Market Outlook to 2011 which covers the ‘5 Major dermatological indications,’ rosacea being one of these and says about this report:

“The Dermatology Market Outlook to 2011 provides detailed analysis on 5 indications within the dermatology market, identifying high growth brands, future market leaders and key drug classes. The in-depth 6-year epidemiology and product sales forecasts in this report will enable you to plan effectively, evaluate changes in the competitive positions of leading companies and accurately benchmark your position.”

If you can get this report it would be a great benefit to know what it says the market share is for rosacea. But I can’t afford to buy this report but if you can let us know what you find out? If you live in the UK you can buy this report by clicking here. pharmalicensing.com also sells this report. The abstract of this report says the following:

“Forecast sales of the acne market are estimated at $2.7bn in 2011.”

There is no forecast figures for rosacea but it may be similar. And remember, these are prescription drugs only.

Another outlook report for 2013.

Sources:

“The revenue of dermatological market in 2006 was $16bn”
The World Dermatological Market Analysis & Forecasts 2007-2022

“Research and Markets: Acne & Rosacea Therapeutics: Ten Emerging Acne and Rosacea Therapies in Phase and Clinical Development Expected to launch by 2009″. Business Wire

According to a University of California Davis School of Medicine, report, “Recently, subantimicrobial-dose doxycycline was demonstrated to be an effective treatment for rosacea, due to its inherent anti-inflammatory properties. Furthermore, subantimicrobial-dose doxycycline has a more preferable tolerability profile and a lower occurrence of bacterial resistance than traditional-dose doxycycline. To further elucidate the role of tetracycline agents in rosacea, clinical trials that compare these agents with each other as well as with other effective rosacea treatments are called for.”

It will be good to see if clinical studies will be done on the effectiveness of Oracea compared with low dose doxycycline or tetracycline. For more information and a collection of reports of users of Oracea click here.

While misdiagnosis of rosacea is not a massive problem, it comes up quite often in articles and clinical studies on rosacea. This is because sometimes the definition of rosacea is vague. The most common misdiagnosis is acne vulgaris. However because of the number of rosacea mimics misdiagnosis does indeed occur. The next most common ones are Seborrheic Dermatitis, Perioral Dermatitis, and Pityrosporum Folliculitis. You may view some photos of rosacea mimics to see how confusing this may seem. However, if your dermatologist takes the time to get a history and physical exam, usually your diagnosis will be correct. For some anecdotal and other reports of misdiagnosed rosacea click here. To understand better how a rosacea diagnosis is obtained click here.

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: