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  1. image courtesy of Wikimedia Commons A genome-wide association study (GWAS) of rosacea symptom severity was conducted by Aponte et al [1] that concluded "All associations with rosacea were novel except for the HLA locus. Two of these loci (HERC-OCA2 and SLC45A2) and another precedented variant (rs1805007 in melanocortin 1 receptor) with an association P value just below the significance threshold (P = 1.3 × 10-7) have been previously associated with skin phenotypes and pigmentation, two of these loci are linked to immuno-inflammation phenotypes (IL13 and PSMB9-HLA-DMA) and one has been associated with both categories (IRF4). Genes within three loci (PSMB9-HLA-DMA, HERC-OCA2 and NRX3-DIO2) were differentially expressed in a previously published clinical rosacea transcriptomics study that compared lesional to non-lesional samples. The identified loci provide specificity of inflammatory mechanisms in rosacea, and identify potential pathways for therapeutic intervention." "In genetics, a locus (plural loci) is a specific, fixed position on a chromosome where a particular gene or genetic marker is located." Wikipedia "With the completion of the Human Genome Project in 2003 and the International HapMap Project in 2005, researchers now have a set of research tools that make it possible to find the genetic contributions to common diseases." [2] "Genome wide association studies (GWAS) are a relatively new approach to analyzing genetic sequence and have quickly become a fundamental part of modern genetic studies. Their purpose is to determine alleles that correlate to different diseases and traits." [3] "Despite clear successes in identifying novel disease susceptibility genes and biological pathways and in translating these findings into clinical care, GWAS have not been without controversy. Prominent criticisms include concerns that GWAS will eventually implicate the entire genome in disease predisposition and that most association signals reflect variants and genes with no direct biological relevance to disease." [4] End Notes [1] Hum Mol Genet. 2018 Aug 1;27(15):2762-2772. doi: 10.1093/hmg/ddy184. Assessment of rosacea symptom severity by genome-wide association study and expression analysis highlights immuno-inflammatory and skin pigmentation genes. Aponte JL, Chiano MN, Yerges-Armstrong LM, Hinds DA, Tian C, Gupta A, Guo C, Fraser DJ, Freudenberg JM, Rajpal DK, Ehm MG, Waterworth DM. [2] Genome-Wide Association Studies Fact Sheet, NHGRI, NIH [3] Genome Wide Association Studies (GWAS), Genetics Generation [4] Nature Reviews Genetics, ISSN 1471-0064 (online) Benefits and limitations of genome-wide association studies Vivian Tam, Nikunj Patel, Michelle Turcotte, Yohan Bossé, Guillaume Paré & David Meyre
  2. Image of Demodex Folliculorum courtesy of National Geographic - by Darlyne A. Murawski Galderma reports that treatment with Soolantra improves rosacea. This is usually the same with treatment using the ZZ cream. There are substantial anecdotal reports that treatment for demodectic rosacea by reducing the number of mites that it gets worse before it gets better. The Theory Behind This Logic The logic behind this is that killing the demodex mites causes a die-off of the mites that takes weeks to accomplish since new eggs are being hatched each day and the "life cycle of demodex mites consists of five phases of development and lasts from 14 to 18 days". [1] Furthermore because the movement of the mites has been shown to be "at a speed of 8-16 mm/h" [2] they may leave the area being treated and return later while planting eggs along the route. During the initial treatment which may take weeks some of the mites are reported to be killed which may cause inflammation and worsen the skin. One explanation of this is the "Jarisch–Herxheimer reaction" (JHR) which has been "traditionally associated with antimicrobial treatment of syphilis." [3] The principle of JHR may indicate a reason why it gets worse before it gets better. One source comments on this by stating, "And while the JHR only technically relates to spirochetal infections (spiral-shaped bacteria) and antibiotics, the concept of symptom-onset or worsening after starting treatment with antimicrobials has been seen to apply more broadly in clinical practice. This is why you’ll often hear practitioners talk about a Herx-reaction, even if it isn’t scientifically accurate. But, what we call ‘die-off symptoms’ is certainly something we see commonly when clients begin addressing bacteria, parasites and yeast pathogens using natural antimicrobials." [4] Most reports indicate that it takes eight to twelve weeks to achieve clearance. It is not uncommon in medical treatment that 'it gets worse before it gets better,' such as in treating acne, which the Mayo Clinic states, "With most prescription acne drugs, you may not see results for four to eight weeks, and your skin may get worse before it gets better. It can take many months or years for your acne to clear up completely," or in immunotherapy, 'it gets worse before it gets better.' In fact, immunosuppressive treatments may actually increase demodex mites! [11] When treated with isotretinoin for acne, one reports states, "Some patients experience an initial worsening of their acne in the first month of treatment; less commonly, isotretinoin can induce acne fulminans." [13] One article explains, how this might happen when treatment is for demodex mites: "Rosacea often improves with antibacterial drugs that don’t affect the mites, such as tetracyclines. Kavanagh thinks this is because rosacea is caused by a reaction to bacteria in the mite’s faeces." Antibiotics do not kill demodex mites but likely treats the bacteria the mites carry. [5] Furthermore, there are at least six types of bacteria that have been associated with demodex mites, and bacteria has been implicated for a long time with rosacea. [6] At least one fungus has been associated with rosacea [7]. Viruses have not been ruled out in rosacea. There are very little, if any, clinical studies done on virus and rosacea. Viruses are in bacteria and throughout the human body and comprise more weight in the human body than bacteria by a factor of ten times. [8] For that matter, other microbes haven't been studied either, such as protozoa or archea. There is much to learn about the human microbiome and as more research is done, new insights are learned. Ivermectin, the active ingredient in Soolantra and horse paste is an insecticide that kills parasites, including mites. Sulfur in the ZZ cream has been used for decades to treat rosacea and kill the mites as well. [12] More study should be done on why treatment for demodectic rosacea seems in many cases to get worse before it gets better. Nevertheless, reducing demodex density counts in rosacea improves the patient with rosacea. [9] Just think if 10K members of the RRDi each donated one dollar and insisted on supporting a reputable clinician to study what they wanted, supporting their own research, what might be discovered? This can only happen if you want it to happen. Or you can continue to do nothing and let the status quo research continue on. [10] Rosacea Forum Severe-die-off-from-zz-after-first-use In the above thread, Mothinrust had an initial immediate reaction of getting worse and then one month (1/18/2020 post no 35) later posts, "But I do think it helping my skin so much....So I take the vast improvement as a sign of better things to come...." He posted a total of eleven posts in the thread. End Notes [1] Demodex Update Subheading, The potential role of Demodex folliculorum mites and bacteria in the induction of rosacea, third paragraph [2] Russian Study on Demodex Mites and Rosacea Illuminating, (2) The report confirms the size and movement of demodex, second paragraph [3] Jarisch–Herxheimer reaction, Wikipedia [4] Pathogen & Parasite Die-Off Symptoms: How to manage detox side-effects, Bella Lindemann, June 24, 2019 [5] Rosacea may be caused by mite faeces in your pores, Debora MacKenzie, New Scientist [6] Bacteria Associated with Rosacea and Demodex Mites Bacteria Theory [7] Candida Albicans [8] Human Microbiome, Brady Barrows [9] Decreasing Demodex Density Count Improves Rosacea What are the numbers? [10] Rosacea Research in Perspective of Idiopathic Diseases Rosacea Research in Perspective of Funding [11] Immunosuppressive Treatments May Increase Demodex Mites [12] The Health Benefits of Sulfur, Cathy Wong, VeryWellHealth [13] Clin Cosmet Investig Dermatol. 2019; 12: 943–951. Challenges and Solutions in Oral Isotretinoin in Acne: Reflections on 35 Years of Experience Vincenzo Bettoli, Aurora Guerra-Tapia, Maria Isabel Herane, and Jaime Piquero-Martín
  3. Scanning electron micrograph of a human T lymphocyte (also called a T cell) from the immune system of a healthy donor. Image courtesy of Wikimedia Commons Chronic Mucocutaneous Candidiasis (CMC) "is an immune disorder of T cells, it is characterized by chronic infections with Candida that are limited to mucosal surfaces, skin, and nails." [1] One report states, "Heterozygous STAT1 gain-of-function (GOF) mutations result in a combined form of immunodeficiency which is the most common genetic cause of chronic mucocutaneous candidiasis (CMC)." [2] This same report connects "chronic demodicosis in the form of a facial papulopustular eruption, blepharitis, and chalazion" with CMC. This could also be described as demodectic rosacea. Candida has been connected to rosacea in at least one paper. [3] End Notes [1] Wikipedia [2] Pediatr Dermatol. 2019 Oct 21; STAT1 gain-of-function and chronic demodicosis. Molho-Pessach V, Meltser A, Kamshov A, Ramot Y, Zlotogorski A [3] Candida Albicans
  4. The skeleton structure of the SNRI venlafaxine, a typical example of an antidepressant. image courtesy of Wikimedia Commons "I’d never heard of antidepressants causing any issues with skin, which made me wonder if anyone else was having the same issue and just putting up with it in silence – or if the whole thing was in my head. I chatted with Dr Zubair Ahmed, the CEO of MedicSpot digital clinics, who confirmed that yes, antidepressants can absolutely cause or worsen skin conditions. ‘These skin issues range from innocent facial flushing to life threatening systemic rashes such as Stevens-Johnson syndrome,’ Dr Ahmed told metro.co.uk. ‘You may also notice purple dots on your skin (Purpura) or a condition called urticaria which is often due to an allergic reaction. ‘Eczema is also associated with antidepressant medication.’ " How your antidepressants might be messing with your skin, Ellen Scott, Metro Chai reports a serious rosacea flareup after withdrawing from mirtazapine.
  5. image courtesy of Wikimedia Commons There are a number of anti-flushing prescriptions reported by rosaceans and we have an exhaustive list here (also includes a list of non prescription treatments as well).
  6. Aclaris has now sold Rhofade to EPI Health, LLC.
  7. "Aclaris Therapeutics, Inc. (Nasdaq: ACRS), a physician-led biopharmaceutical company focused on immuno-inflammatory diseases, today announced it has divested RHOFADE® (oxymetazoline hydrochloride) cream, 1% (RHOFADE) and related intellectual property assets to EPI Health, LLC (EPI Health). The divestiture of RHOFADE is a key component of Aclaris’ recently announced strategic plan to refocus resources on the development of its immuno-inflammatory development programs." GlobalNewswire, Inc, October 10, 2019 "Allergan developed and brought RHOFADE to market in 2017 after acquiring the drug as part of its 2011 acquisition of Vicept Therapeutics, Inc., a company established by certain members of the current senior management team of Aclaris." Business Insider, October 15. 2018 Aclaris owned Rhofade and sold it to Allergan and bought it back on October 2018. The new owner, EPI Health, states on its website, "EPI Health is continually expanding our prescription product line to offer healthcare professionals and patients new and better options to treat skin conditions." EPI Health's president, John A. Donofrio, joined EPI Health in March of 2019. image courtesy of EPI Health, LLC
  8. "All the cases, spreading rose petals on their face, at the end of the treatment show a decrease of the redness as well, and their “facies” exhibit a dark pinkish colour, that correspond to a real flesh-coloured appearance, that reveals a complete status of good health and remission of the syndrome." Our Dermatology Online, Letter to the Editor Rosacea treated with rose petals: a calembour that affffords intriguing results Piotr Brzezinski, Lorenzo Martini Since obtaining rose petals is without a doubt an easy task for most rosaceans worldwide, we should be able to easily confirm if this treatment works. Please post your results in this thread. Thayers Alcohol-free Rose Petal Witch Hazel with Aloe Vera Thayers Natural Remedies Alcohol-Free Rose Petal Witch Hazel Facial Mist Toner Teddie Organics Rose Water amcfarland41 [post no 232] writes, "A product that I use alongside the books knowledge is a type of water called "Rose Water". This is the only thing I put on my face now and it is completely natural. Most importantly, it has one ingredient. It allows your face to breathe and remain cool when you would usually get hot. Also, it is a great value, as it will last you for a year. Instead of spending your hard earned money on various products that promise to treat your Rosacea,..."
  9. There is a new cosmetic version of the ZZ cream now available on Amazon which is priced at $39 with free shipping until November 16, 2019. After this date the price goes up to $49. To learn more about this and what the difference is between the cosmetic ZZ cream and the original ZZ click here. I haven't used the ZZ cream for probably around nine months. I tried the horse paste because there were so many who raved about the success they were having with it and I must say, it is just as good or better than Soolantra. I just received a new shipment of the Cosmetic ZZ cream and must say this is an improved version and works much better and I have always preferred using the original ZZ cream over any other topical treatment for rosacea. Within a week my red spots have cleared up. I highly recommend you try a three month supply of the Cosmetic ZZ cream or at the very least one jar to see if your rosacea improves. If it does, you have demodectic rosacea.
  10. No mention of ivermectin in the abstract. Wonder if these authors have heard of Soolantra?
  11. One report on 50 patients with rosacea using topical ivermectin concluded, "Ivermectin is an effective treatment not only in moderate-severe papulopustular rosacea but also in almost clear/mild rosacea." [bold added] Dermatol Ther. 2019 Oct 03;:e13093 Real life experience on effectiveness and tolerability of topical ivermectin in papulopustular rosacea and anti-parasitic effect on Demodex mites. Trave I, Merlo G, Cozzani E, Parodi A
  12. A recent report concluded, "As a result, the Demodex count was significantly higher in the primary demodicosis and rosacea patients than the control group. We think that every Demodex-positive patients should be evaluated for also eyelash mites to prevent a possible chronic blepharitis."
  13. The RRDi has been using the Invision Community forum for many years. It has been announced that there will soon be Invision Community Apps for iOS & Android released to the public. We look forward to using these new apps.
  14. I was intrigued when I heard about The Planetary Society and requested the latest Form 990 from this 501 c 3 non profit organization, which means that any donation to this non profit is tax deductible for the donor. I received the following pdf: 2018 TPS 990 without Schedule B.PDF You can review this above yourself and save yourself the time requesting it for yourself. A cursory review of the above Form 990 shows some interesting facts. For example, total revenue (donations) in tax year 2017 was $4,945,266.00 and total expenses were $4,885,055.00 so they spent just about all the donations except for about $60K. See the summary below: What did they spend most of the money on? What about 'planetary' things? Actually most of the donations for 2017 were spent on salaries and employees if you go through the expense details which amounted to $2,682,000.00 if you look above. If you will note in the summary, line 5, there are 29 employees of The Planetary Society. That means if you average it out, each employee cost The Planetary Society $92,482.75. Would you like to work for The Planetary Society? Remember that each employee is paid with donations from the public. However, you should note that the six board of directors received the highest amount in salaries and compensation. The salaries for six of the board of directors amounted to $911,122 which is 34% of the total expenses on salaries listed on 15 above which you can view below in detail: I challenge any of you to find in the Form 990 provided for free from The Planetary Society to find what this non profit organization spent on 'planetary' or 'space' items? I found one grant they spent in the amount of $98,759 (line 13 in the summary above) and for its Lightsail Project which is listed below in the amount of $123,000 spent on an independent contractor, Ecliptic Enterprise Corporation (see below). So the only two items I could find that remotely relates to 'space' are one grant and its one project which totals $221,759.00. That means for every dollar donated to The Planetary Society about 4 cents is actually spent on what its mission statement is about. The other 96 cents of a donated dollar is spent on operating the organization and most of the expense is on salaries and employees (54%). This is not uncommon practices for non profit organizations which is the theme of this entire thread. If you take the time and effort to receive a Form 990 from any 501 c 3 that is required to publish one that makes it available to anyone who asks, you will find that most non profits spend very little on its 'mission.' One other item of note are the assets listed by this non profit organization. When you bring in millions of donations each year, it is possible that the non profit organization accumulates assets. Note below what is listed in the Form 990: The total assets are significant. In other words, if this organization ever decided to dissolve, it could sell the assets and the organization is required to disclose where all the money from those assets went. But most people simply don't care how non profit organizations spend their donations. Especially when it comes to rosacea non profits. Are you surprised or do you even care about any of this?
  15. Thanks Erin for your post. Many, many others have reported great success with horse paste (gel). Without a doubt, Galderma and other pharmaceutical companies will note this success and start producing 1.87% ivermectin in a gel form without as many inactive ingredients to compete with the success you and others are having, especially a cheap version that could get FDA approved for human treatment. As for taking ivermectin orally, we have a thread on using ORAL IVERMECTIN FOR ROSACEA which is separate from the one you are posting in here which is about topical horse paste treatment. Really appreciate your post very much.
  16. A new paper published in the September 2019 issue of The Journal of the European Academy of Dermatology and Venereology states that treatment using benzyl benzoate and crotamiton has been shown to decrease demodex density counts and improve demodectic rosacea. Benzyl Benzoate is a medication and insect repellent also used to treat scabies and lice. Crotamiton has been used to treat rosacea for sometime now and has traditionally been used to treat scabies. For more information.
  17. Admin

    Brimonidine

    There are a number of papers warning about allergic contact dermatitis to topical brimonidine (Mirvaso): Case Report: Allergic Contact Dermatitis to Topical Brimonidine Demonstrated With Patch Testing: Insights on Evaluation of Brimonidine Sensitization. Allergic contact dermatitis caused by Mirvaso®, brimonidine tartrate gel 0.33%, a new topical treatment for rosaceal erythema. [Allergic contact dermatitis to Mirvaso® (brimonidine tartrate)]. Allergic contact dermatitis to topical brimonidine. Sensitization to and allergic contact dermatitis caused by Mirvaso(®) (brimonidine tartrate) for treatment of rosacea - 2 cases.
  18. We are pleased to announce that the RRDi is sponsoring a PRIVATE Tapatalk Rosaceans Forum at the following url: https://rosaceans.org We hope you enjoy using the new forum. The Tapatalk Rosaceans Forum is a private forum if your prefer privacy over our Invision Community Forum (the forum you are currently using) which is a PUBLIC forum (posts are public but only members may post). The private rosacean Tapatalk forum uses Tapatalk Gold Points for those who so choose to use this reward system, but you are not required to purchase gold points since the forum is sponsored by the RRDi and has removed all advertisements and it is a free forum. You may purchase gold points only if you prefer to do so and are under no obligation to do so since we are sponsoring this new Tapatalk Forum. Let us know how you feel about this new PRIVATE forum by posting in this thread. We will sponsor this for a limited time to see if the private Tapatalk forum is popular or not? Let us know your thoughts on the rosaceans Tapatalk private forum in this thread, please?
  19. Andy, You can learn about oral ivermectin with this post. You should be able to view demodex with the naked eye but dermoscopy or a cheap microscope makes viewing easier. This post explains about viewing demodex. A Russian paper on demodex had this point concerning demodex brevis: Demodex brevis not as significant as Demodex Folliculorum "In patients with severe manifestations of the condition (pustulous and infiltrative- productive forms of rosacea), the species of the mites Demodex folliculorum (P<0.01) is more often detected. Demodex brevis is found in mild forms of the condition and in healthy people, without showing signs of parasitism." "When Demodex brevis is found, given its weak possibility of parasitism, treatment with antiparasitic drugs is not indicated." More information
  20. image courtesy of Wikimedia Commons What is Tripterygium wilfordii? Wikipedia says, it is "a vine used in traditional Chinese medicine." More info on Morbihan disease
  21. The internet certainly has changed over the years. In 2004 when the RRDi was founded, the rosaceans then really wanted to become united and do something about rosacea. Today, all they want to do is gather together in social media private groups like Facebook, Instagram, Twitter, and Reddit and discuss what they do about rosacea and do absolutely nothing about uniting together into a non profit organization for rosacea and do something about this disease. There are basically four non profit organizations for rosacea (see Other Non Profit Rosacea Organizations). So does anybody care what a non profit organization should be doing about rosacea? What are your thoughts? Do you know anything about what the four non profit organizations are doing about rosacea? Would love to discuss this or if you have questions about any of this, ask? For example, what is the difference between a nonprofit and a not-for-profit organization? Yes, there is a difference. Wikipedia explains, "Nonprofit and not-for-profit are terms that are used similarly, but do not mean the same thing. Both are organizations that do not make a profit, but may receive an income to sustain their missions. The income that nonprofit and not-for-profit organizations generate is used differently. Nonprofit organizations return their income back to the organization if they generate extra income. Not-for-profits use their excess money to pay their members who do work for them. Another difference between nonprofit organizations and not-for-profit organizations is their membership. Nonprofits have volunteers or employees who do not receive any money from the organization's fundraising efforts. They may earn a salary for their work that is independent from the money the organization has fundraised. Not-for-profit members have the opportunity to benefit from the organization's fundraising efforts." However, whether an organization is a nonprofit or a not-for-profit based upon the above paragraph can get really fuzzy and the lines are not easily drawn. Could you please reply to this topic by hitting the green REPLY TO THIS TOPIC button and post your comment on this subject?
  22. Sorry to hear that since I have enjoyed your posts. Dr. Cordain wrote the Paleo Diet, which is a high protein diet, similar to my Rosacea Diet, the Atkins Diet, Protein Power by Drs. Eades. I recall you wrote something in this thread about Dr. Cordain regarding his use of references? I invited him to volunteer on the RRDi MAC because there are many rosaceans who have posted that eating high protein and avoiding carbohydrate, especially sugar improves rosacea. Dr. Cordain rarely posts here, as you will find out, most of the MAC members rarely post since they are all living very busy lives.
  23. I have tried the Soolantra and posted my results here. I have tried the Durvet horse paste and prefer it over Soolantra. I like the horse paste 'gel' better than the oily 'cetaphil' Basis for the Vehicle in Soolantra. Hope you have good results with Soolantra, since many do report it works for them. As for your eyes, many have reported that the Cliradex towels work. As for shampoo there are a number of tea tree oil shampoos that many have reported works for them, i.e., Ovante or DS Shampoo, and there are many others. Ivermectin generally takes 12 weeks for clearance, after that, you can figure out your own maintenance routine, hopefully, one or twice a week. As for the human microbiome, there are ten times as many virus in a human as there are bacteria. The Russians and Eastern Europeans have traditionally looked into using bacteriophage (virus) for over ninety years and are way ahead of Western Medicine into research on this subject, using bacteriophage as an 'antibiotic' in treatment of disease. The Western bias of focusing on bacteria as the culprit of everything and dismissing all the other microbes besides bacteria clouds the health issue. For more information on the human microbiome.
  24. Global ROSacea COnsensus (ROSCO) 2019 In 2019 the ROSCO panel collaborated again with a paper published in the British Journal of Dermatology and concluded: "The current survey updates previous recommendations as a basis for local guideline development and provides clinical tools to facilitate a phenotype approach in practice and improve rosacea patient management." The original panel lost one member, Y Wu from China, and has gained five new members, J. Del Rosso, R.D. Granstein, G. Micali, E. Tanghetti and M. Zierhut. Here is the list of 2019 ROSCO Panel: L.M.C. Almeida, Brazil A. Bewley, United Kingdom B. Cribier, France J. Del Rosso, USA N.C. Dlova, South Africa R.L. Gallo, USA R.D. Granstein, USA G.Kautz, Germany M.J. Mannis, USA G. Micali, Italy H.H. Oon, Singapore M. Rajagopalan, India M Schaller, Germany M. Steinhoff, Ireland J. Tan, Canada E. Tanghetti, USA D.Thiboutot, USA P. Troielli, Argentina, E.J. van Zuuren, Netherlands G. Webster, USA M. Zierhut, Germany 2019 Total ROSCO Panel Members 21
  25. The ivermectin apparently kills the mites. The metronidazole is an antibiotic and helps heal any bacterial infection that you may be experiencing. Sometimes dermatologists also prescribe taking oral antibiotics, i.e., doxycycline, along with the ivermectin, the gold standard that Galderma uses. I am happy for you that your ivermectin/metronidazole treatment is improving your skin. It usually takes twelve weeks for clearance and after that using a maintenance treatment, say two times a week or when you feel it is necessary. Thanks for the links to the TED talks. The Russian study on demodex is illuminating as well as the demodex update post. As for vaginal yeast infections, antibiotics don't work well on such, but anti-fungals do. There simply isn't much research on anti-fungals and rosacea, or for that matter the rest of the skin microbiome. Bacteria only takes up a small percentage of the human microbiome, yet research has been overwhelming in favor of looking at bacteria for over a hundred and fifty years which focuses on antibiotic treatment. This bias toward bacteria tends to ignore other microorganisms, i.e., virus, fungus, archea, protozoa, helminths, demodex, and the list continues to grow. Candida albicans (a fungus or yeast) and rosacea have been linked in at least one research paper.
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