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  1. Soolantra at drugs.com costs $389/30 grams
  2. Trillium, Tom Busby, SD poster extraordinare at RF, mentioned in a post on this subject at RF, "an alternative source of ivermectin, on eBay" which is ivermectin powder. I asked Tom whether this would be a good idea since it seems a lot safer to use the horse paste than have to concoct a paste with grain alcohol and his comment is, "horse paste is fairly expensive for a really tiny amount of product.... I have to assume that someone who has some experience formulating hot emulsions (oil in water) could make a non-greasy cream with this ivermectin powder." There is a formulae based upon weight how much ivermectin to use per pound of body weight. You mention using the Cetaphil base for your concoction. Have you used Cetaphil? No issues with Cetaphil? Some have reported they cannot tolerate Cetaphil, while others just love it. We have a post explaining the 'basis for vehicle' regarding the use of Cetaphil with Soolantra that should prove illuminating to you. Some prefer the smaller amount of inactive ingredients in horse paste over using the huge amount of inactive ingredients in Cetaphil based Soolantra. There are a significant number of brands of horse paste and each one has similar but different inactive ingredients which are discussed in this thread. We have found two brands that actually list the inactive ingredients, but most brands do not list the inactive ingredients since they are not required to do so. As for price of Soolantra have you contacted Galderma about the CareConnect program that you may qualify for? As for the high prices pharmaceutical companies charge in the USA which is related to the medical insurance conglomerate and the universal health insurance issue, yes, it is sad that medical treatment is for the rich, similar to the way justice is given. If you are rich you definitely have an advantage in the USA for justice and medical treatment. But there are some work arounds, where philanthropic organizations help the poor with the money donated by rich benefactors but obviously not enough is given to alleviate these issues. Our non profit organization tries to help in small ways by educating Rosaceans on alternative treatments like ElaineA has done in this thread. Hopefully, you will figure out your own ivermectin solution. Are you confident that using ivermectin actually controls your rosacea? Ivermectin doesn't work for every rosacean. Which brand of horse paste 'leaves a goopy mess on your face at night' ? Have you tried using the horse paste on at night and then washing it off in the AM? Most use Soolantra this way, only use at night. Horse paste is usually only put on at night and then washed off in the AM. Keep us posted.
  3. One cross-sectional study including 99 women with Frontal fibrosing alopecia presented a higher prevalence of rosacea than did controls. [1] "Frontal Fibrosing Alopecia is the frontotemporal hairline recession and eyebrow loss in postmenopausal women that is associated with perifollicular erythema, especially along the hairline. It is considered to be a clinical variant of lichen planopilaris. Frontal Fibrosing Alopecia has been most often reported in post-menopausal women with higher levels of affluence and a negative smoking history. Autoimmune disease is found in 30% of patients." Wikipedia Frontal fibrosing alopecia may be a co-existing condition with rosacea. Genetic and Rare Diseases Information Center (GARD) End notes [1] A Cross-sectional Study of Rosacea and Risk Factors in Women with Frontal Fibrosing Alopecia.
  4. Admin

    Phenotypes Updates

    Medscape has recognized the phenotype classification of rosacea with the following: In 2016, the global rosacea consensus panel recommended a new classification: at least one diagnostic or two major phenotypes are required for the diagnosis of rosacea. Diagnostic phenotypes A diagnosis of rosacea may be considered in the presence of one of the following diagnostic cutaneous signs: Fixed centrofacial erythema in a characteristic pattern that may periodically intensify Phymatous changes: Patulous follicles, skin thickening or fibrosis, glandular hyperplasia, and bulbous appearance of the nose (rhinophyma is the most common form) Major phenotypes Without a diagnostic phenotype, the presence of two or more of the following major features may be considered diagnostic: Papules and pustules Flushing: Frequent and typically prolonged Telangiectasia: Predominantly centrofacial in phenotypes I-IV, rarely seen in darker phenotypes Ocular manifestations Secondary phenotypes The following secondary signs and symptoms may appear with one or more diagnostic or major phenotypes: Burning and stinging Edema: Facial edema Dry appearance: Central facial skin may be rough and scaly Ocular rosacea Major features of ocular rosacea are as follows: Lid margin telangiectasia Interpalpebral conjunctival injection Spade-shaped infiltrates in the cornea Scleritis and sclerokeratitis Secondary features of ocular rosacea are as follows: "Honey crust" and collarette accumulation at the base of the lashes Irregularity of the lid margin Evaporative tear dysfunction (rapid tear breakup time) Although ocular manifestations may precede the cutaneous signs by years, in many cases they develop concurrently with dermatologic manifestations. The diagnosis of rosacea is made clinically, based on the 2016 global rosacea consensus that one diagnostic or two major phenotypes are required for the diagnosis of rosacea. A skin biopsy is sometimes performed to exclude other cutaneous diseases, such as lupus or sarcoidosis. Agnieszka Kupiec Banasikowska, MD Consulting Staff, Georgetown Dermatology, PLLC Medscape > Drugs & Diseases > Dermatology > Rosacea
  5. A recent paper on the subject of probiotics for skin conditions states, "Unfortunately, very few studies have looked how probiotic supplementation influence inflammatory skin disorders. The results of probiotic use, although beneficial, are difficult to implement into clinical practice due to the heterogeneity of the applied supplemental regimen. In this Viewpoint we aim to encourage the conduction of more research in that direction to explore unambiguously the therapeutic potential of oral probiotics in dermatology." [1] Wouldn't it be incredible if a non profit for rosacea got 10K members each to donate one dollar to fund a peer reviewed, double blind, placebo controlled clinical study on probiotics and rosacea? Could that be possible? Only you can be a part of such a miracle. End Notes [1] Exp Dermatol. 2019 Aug 06;: Targeting the gut-skin axis - probiotics as new tools for skin disorder management? Szántó M, Dózsa A, Antal D, Szabó K, Kemény L, Bai P
  6. Actually is isn't as off topic about rosacea as it should be, because there are many published peer reviewed papers on rosacea, but I thought it important enough to have this article mentioned in a post to be able to refer to it later, since it points out some of the negative aspects of those who rely on peer reviewed papers. The article, Why we shouldn’t take peer review as the ‘gold standard’, by Paul D. Thacker and Jon Tennant, August 1, 2019, The Washington Post, has this subtitle, 'It’s too easy for bad actors to exploit the process and mislead the public.'
  7. Credit: INSTAGRAM / JO HOARE The writer, Jo Hoare, states clearly, "I was diagnosed in 2016" with rosacea in an article in The Sun, SEEING RED Writer dares to bare the truth about living with rosacea and how to manage its symptoms. Jo Hoare is a journalist based in London, UK. Linkedin • Jo Hoare has made the RRDi official list of famous rosaceans. That is what you do, get a diagnosis from a physician, preferably a dermatologist like Jo Hoare did. She complains of flushing so she may have Phenotype 1 and Phenotype 2 (you can have more than one phenotype of rosacea, there are actually six phenotypes). While Tom Busby makes a point that "Rosacea is so badly defined" it is important that anyone that presents with a red face should get a correct diagnosis since there are also at least thirteen variants of rosacea and a huge number of rosacea mimics, so a differential diagnosis is prudent. Just because one presents with a red face doesn't necessarily mean one has rosacea. I refer to Dr. Draelos statement about all this which is pertinent to this post, "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." So while there is some confusion about presenting one self to a physician with a red face, there is a lot of information dermatologists have to find a correct diagnosis by taking a patient history, examination, and possibly some tests to rule out certain skin conditions that present with a red face. What everyone wants is to find the best dermatologist who does just that (finds the correct diagnosis), because misdiagnosis is not uncommon. Sometimes, the path to a correct diagnosis can get complicated.
  8. image courtesy of Wikimedia Commons Another rosacea mimic to rule out is Perioral Demodex folliculitis from Rosacea Perioral Dermatitis. See the following article: JAAD Case Rep. 2019 Jul; 5(7): 639–641.Perioral Demodex folliculitis masquerading as perioral dermatitis in the peripartum periodDema T. Alniemi, MD and David L. Chen, MD
  9. Admin

    Phenotypes Updates

    The AARS in June 2019 has now officially at the very least, started to recognize the phenotype classification of rosacea with its published paper stating, "The classification of rosacea in both clinical practice and research previously utilized subtype designations as described by Wilkin et al in 2002 from the National Rosacea Society. However, the current recommendations from multiple organizations with interest in the diagnosis and treatment of rosacea suggest characterizing patients with rosacea by individual clinical manifestations and symptoms that are present at the time of examination. As rosacea is a phenotypically heterogeneous disease, this might include central facial erythema without papulopustular (PP) lesions; central facial erythema with PP lesions; the presence of phymatous changes, ocular signs, and symptoms; extensive presence of facial telangiectasias; and marked, persistent, nontransient facial erythema that remains between flares of rosacea and might exhibit severe intermittent flares of acute vasodilation (flushing of rosacea). Manifestations at various time points in a single patient might differ depending on whether the rosacea is flared or quiescent, the age of the patient, the duration of his or her disease, the frequency and magnitude of rosacea flares, and associated symptomatology." J Clin Aesthet Dermatol. 2019 Jun; 12(6): 17–24. Update on the Management of Rosacea from the American Acne & Rosacea Society (AARS) James Q. Del Rosso, DO, FAOCD, FAAD, Emil Tanghetti, MD, FAAD, Guy Webster, MD, PhD, FAAD, Linda Stein Gold, MD, FAAD, Diane Thiboutot, MD, FAAD, and Richard L. Gallo, MD, PhD, FAAD While this isn't exactly endorsing the phenotype classification 'officially' and it is odd that the AARS paper on the management of rosacea has such a cursory reference to phenotypes since the ROSCO panel, RRDi, NRS, and Galderma have endorsed the phenotype classification of rosacea. But notice the 'phenotypically' list quoted above how it follows the phenotype classification: "central facial erythema without papulopustular (PP) lesions;" (Phenotype 2) "central facial erythema with PP lesions;" (Phenotype 4) "the presence of phymatous changes," (Phenotype 5) "ocular signs, and symptoms;" (Phenotype 6) "extensive presence of facial telangiectasias;" (Phenotype 3) "and marked, persistent, nontransient facial erythema that remains between flares of rosacea and might exhibit severe intermittent flares of acute vasodilation (flushing of rosacea)" (Phenotype 1) The AARS is recognizing the phenotypes in its own way. This is typical of how rosacea non profit medical organizations have to be different yet basically say the same thing, just list in a different order with lots of words. You can probably see that the six phenotypes are an easier way to refer to these 'manifestations' especially in writing down a diagnosis on a patient's chart.
  10. Quite right. There hasn't been any dog mites shown to be on human skin. Weird isn't it? Yet, dog mites can travel on human skin. But for some reason we never find dog mites on human skin. I haven't really done any serious investigation on this because all the papers say humans only have demodex folliculorum and brevis mites. The dog mites are indeed different mites as you have pointed out. Sorry to cause any confusion.
  11. Just about everyone on planet earth has Demodex mites since they are part of the human microbiome. They usually pose no issues in most humans having a symbiotic relationship, but for some unknown reason in some people, the mites increase in number and are associated with rosacea. While it is true that mites can be spread by human contact, not to mention you can get mites from dogs, most contact poses no issues. Your skin also has many other microbes besides demodex, i.e., bacteria, archea, and fungi. When humans interact with each other skin contact is normal and basically no one worries about skin contact unless there is some skin disease that warrants no skin contact. In rosacea patients with high numbers of demodex folliculorum they become a parasite while demodex brevis is a saprophyte. There are no clinical papers studying whether or not a demodectic rosacea sufferer can spread this to another human, but without a doubt mites do travel to another human with skin contact so the probability is without a doubt possible. However, your girl friend may have a skin metabolism that is able to handle the demodex mites. For more information you may want to read this paper by the Russians on demodex as wells as, the update post on our understanding of demodex. For all our posts on demodectic rosacea click here. As for your contact with your girl friend, it would be prudent to let her know about all this and let her decide. One other point to correct is not all rosacea is demodectic. There are some who do not respond well to treatments aimed at eliminating demodex mites. In those cases these rosaceans may simply have one or more of the phenotypes of rosacea or another rosacea variant.
  12. This post about horse paste is helpful regarding this thread: https://irosacea.org/forums/topic/4191-horse-paste-for-rosacea/ Sent from my iPhone using Tapatalk
  13. If you are interested in this subject, there is an excellent post discussing demodex density numbers in rosacea and do these numbers really matter?
  14. If the RRDi has the money, what would you prefer the RRDi spend its donated funds on what particular rosacea research?
  15. Please vote on what prescription drug treatment you would prefer having rosacea research results with.
  16. For a long time microorganisms of the skin microbiome have been suggested as a cause of rosacea. The list includes, bacteria, virus, and demodex mites. Further, there are some papers that suggest that the gut microbiome may be involved in rosacea. One article comparing identical twins and the skin microbiome reports "Microbial dysbiosis could be one of the factors associated with the pathogenesis of rosacea as well as its comorbidities." [1] This same study concluded, "Our data demonstrate a significant correlation between facial microbiome and severity of rosacea in genetically matched twins and importantly that overall microbiome composition is largely unchanged." Further the study states, "Specifically, we uncovered a positive and a negative association for Gordonia and Geobacillus with rosacea, respectively. Importantly, this was in the background of a largely unchanged microbiome landscape." A Bias With Bacteria as the Focus of Rosacea Research and the Human Microbiome This study focuses primarily on bacteria, i.e., Gordonia, Blautia, Chryseobacterium, Wautersiella, Geobacillus and unknown genus (phylum Proteobacteria). Most rosacea research papers have a bias towards bacteria and largely ignore other microorganisms in the microbiome such as virus, archea, fungi, protozoa, helminths, and demodex (the article made a cursory mention of demodex, but little discussion on this subject). [2] Such bias towards bacteria that ignores these other microorganisms is found in most articles on rosacea since Western Medicine largely ignores these other microorganisms and with very little research. This results with such a paltry knowledge of what might be some significant factors in rosacea other than focusing on bacteria. For example, there are more virus in the human microbiome than bacteria by a factor of ten times yet very little research is done on virus and rosacea. The bias is that bacteria plays a chief role in rosacea resulting in mostly antibiotic treatments and more recently a little probiotic treatment. Research on Other Microbes Besides Bacteria? The role of the other microorganisms besides bacteria should warrant more attention but who will pay for such studies? Demodex has been an example of the most researched microorganism other than bacteria studies. [3] This is because there are now treatments for demodectic rosacea so there is motive to fund such studies. What about research on the other microbes that are in the human microbiome? What role does virus or archea play in rosacea? Do you want to fund such a study? Could 10K members of the RRDi get together and each donate one dollar to fund such a study? Only with your help could we reach such a goal. Think about it. [4] End Notes [1] Exp Dermatol. Author manuscript; available in PMC 2019 Jul 16. Published in final edited form as: Exp Dermatol. 2018 Mar; 27(3): 295–298. Characterization of the facial microbiome in twins discordant for rosacea Asifa K. Zaidi,1 Katrina Spaunhurst, Daniel Sprockett, Yolandas Thomason, Margaret W. Mann, Pingfu Fu, Christine Ammons, Meg Gerstenblith, Marie S. Tuttle, and Daniel L. Popkin [2] Human Microbiome, Brady Barrows [3] Demodectic Rosacea [4] More thoughts on this subject to think about: Rosacea Research in Perspective of Funding Rosacea Research in Perspective of Idiopathic Diseases
  17. Dr. Dray, a dermatologist, has her recommended anti-redness skin care regimen in a YouTube video below which she has partnered with Walmart in using only easy to obtain products. The RRDi has found these same products at Amazon which are listed below the video if you prefer to shop at Amazon. Dr. Dray in her YouTube video above mentions also what she recommends as alternatives to the list above, which are listed for your convenience below: 💜Alternatives to albolene Clinique take the day off cleansing balm Kose softymo cleansing oil 💜Alternatives to vanicream cleanser Cerave hydrating cleanser Neutrogena ultra gentle hydrating cleanser Simple micellar facial gel wash 💜Alternatives to Bioderma sensibio AR cream Cetaphil redness relief night moisturizer PROcure rosacare Cerave PM Equate Beauty Ceramide Moisturizing facial lotion 💜Alternatives to cerave healing ointment Aveeno cracked skin relief Vaseline 💜Alternatives to Eucerin SPF30 Cotz face Blue lizard sensitive SPF 30 Coppertone Pure & Simple SPF50 Think baby Cerave AM 💜Alternatives to vanicream lip spf Cotz lip spf EltaMD UV lip Aquaphor lip 💜Alternative to Cetaphil redness relief spf 20 Physicians formula Super CC SPF30
  18. Apurva, Might not be rosacea. Some conditions you may want to have your dermatologist rule out: Erythromelalgia Keratosis Pilaris Rubra Faceii Pityriasis rosea There are probably a number of other possibilities to rule out since the list of skin conditions that look like rosacea keeps growing. What are you treating your erythema with?
  19. Noticed a couple of posts that nappy, [aka, diaper] (Australian English and British English), skin treatments are helpful in some cases. For example a post from Smacky at RF who reports, "I've been using Bepanthen for about a week now....So I tried Bepanthen, and within a few hours noticed the skin on my nose and cheeks had settled down a bit and looked better. I've been applying it every morning and night before bed, and every day this week I've woken up find my nose a little less red than the day before. I also haven't had a single new spot or lump. I woke up today and looked in the mirror and my nose is the same skin tone as my face. It's almost surreal. Its like looking at a different person who I'd forgotten about. I feel wonderful Anyway I really hope this will help someone else." Ingredients in Bepanthen: Aqua, Lanolin, Paraffinum liquidum, Petrolatum, Panthenol, Prunus amygdalus dulcis oil, Cera alba, Cetyl alcohol, Stearyl alcohol, Ozokerite, Glyceryl oleate, Lanolin alcohol. Rubydo1 post no 2 states about this SD/Rosacea, "To be honest if it wasn’t for sudocrem I’d have a lot more spots." Sudocrem is a product made in Ireland which is available at Walmart. The ingredients for Sudocrem: Zinc Oxide Ph. Eur., Benzyl Alcohol B.P., Benzyl Benzoate B.P., Benzyl Cinnamate, Lanolin, Purified Water, Liquid Paraffin, Paraffin wax, Beeswax, Micrcocrystalline wax, Sodium Benzoate, Linayl Acetate, Propylene Glycol, Citric Acid, Butylated Hydroxyanisole, Sorbitan Sesquioleate, Lavender fragrance Ingredients for Dermocrem are similar: A similar product that is also used to treat diaper rash is Rugby Zinc Oxide Ointment with the following ingredients: Active ingredient Zinc oxide 20% Inactive ingredients mineral oil, petrolatum
  20. Gerd Plewig, MD, who volunteers on the RRDi MAC recently sent a message to all the RRDi members about his fourth edition of his classic book on acne and rosacea which we feature in our store. Below is his message: On Mon, Jul 1, 2019 at 10:40 PM Plewig, Gerd Prof. Dr.med. wrote: Dear Members of the RRDi, You may be interested that the 4th completely revised and augmented edition of Acne & Rosacea is out. It is printed by Springer Milan, Italy, an can be ordered in print version, or electronically. The major chapter on rosacea has been updated in text and clinical illustrations. Also a new chapter on Demodex folliculorum mites with scanning electron microscopy images is added. Finally a new chapter on the history of acne and rosacea is provided. Best wishes, Gerd Plewig Prof. Dr. Dr. h.c. mult. Gerd Plewig, FRCP Department of Dermatology University of Munich Frauenlobstrasse 9-11 80337 Munich Germany
  21. Permethrin 5% Cream has also been found to improve demodectic rosacea.
  22. Queta at RF has posted her regimen for demodectic rosacea: "Mix .5 TBL melted coconut oil (I put it in a the micro for a few seconds because it hardens at room temp) and 5-6 drop tea tree oil. Apply to face and leave on for 40 minutes each evening. I put some on my eyebrows and a little above my eyes but use extreme caution because tea tree oil will really burn your eyes if you get some in them. After waiting 40 minutes, wash off your face and do your usual nightly skin routine. For awhile after I was done washing my face I would use coconut oil as a moisturizer because I read that mites don't like it."
  23. In the UK you can get a Rx from a doctor online at this website. For example, you can get a Rx for Soolantra
  24. It was announced by Galderma on its website on May 16, 2019, "Nestlé today announced that it has entered into exclusive negotiations with a consortium led by EQT and a wholly owned subsidiary of the Abu Dhabi Investment Authority (ADIA) for the sale of Nestlé Skin Health for a value of CHF 10.2 billion. The proposed transaction will be subject to employee consultations and approval of regulatory authorities and is expected to close in the second half of 2019."
  25. The results of this study demonstrated that a single, high-density MFU-V treatment may be effective for treating erythematotelangiectatic rosacea. J Drugs Dermatol. 2019 Jun 01;18(6):522 Safety and Effectiveness of Microfocused Ultrasound for Treating Erythematotelangiectatic Rosacea Schlessinger J, Lupin M, McDaniel D, George R
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