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  1. It really saddens us that Joanne Whitehead, Ph.D., has resigned from the board of directors of the RRDi. She was instrumental in obtaining and working with two educational grants we received from Galderma in 2015 and 2016. Her expertise will be missed and her volunteer spirit. The RRDi greatly appreciates all the volunteer work Dr. Whitehead performed for the RRDi.
  2. darren1 has shared his experience not only with YouTube but also with RF in this thread and you watch one of his videos below:
  3. Galderma has applied for a brimonidine foam patent which according to the patent is claimed to have the "advantage of remaining on the surface of the skin and of delivering a smaller amount so as to prevent undesirable effects (rebound effect) and too obtain a foam that is suitable for treating rosacea." US20190099369A1.pdf
  4. Thanks Rory. Looking forward to your results. Did you see this paper about demodex brevis: Demodex Brevis Higher Count Than Demodex Folliculorum in Cylindrical Dandruff Patients
  5. Actually I ran this by my dermatologist who was well aware that Rosaceans were using horse paste topically since he read about it in a journal. There are some dermatologists who are up to date with what is going on and then there are others who are in the dark. He told me that when prescribing Soolantra to his rosacea patients that about one in four patients were successful using it. He gave me a Rx for Soolantra and I tried it and I think now it was the inactive ingredients in Soolantra that irritated my skin. Galderma (or another pharmaceutical company) will probably eventually make an ivermectin gel with a very simple inactive ingredient list to compete with the horse paste that everyone is raving about. Galderma knows what is going on with rosaceans and obviously saw a slight dip in Soolantra sales due to thousands using horse paste. They know that a significant number of rosacea patients are not able to tolerate the inactive ingredients in Soolantra.
  6. Rory, thanks for clearing this up that you are taking the horse paste orally. We do have a thread dedicated to taking ivermectin orally. While many may think that taking oral ivermectin isn't a good idea, the fact is that oral ivermectin has been given to millions of people worldwide and there are long term studies on oral ivermectin in children. However, the RRDi recommends you check with your physician when embarking on this form of treatment as a precaution. It would be better you post in the oral ivermectin thread since this thread is about using horse paste topically. Thanks.
  7. The RRDi is pleased to announce that Apurva Tathe has been appointed to serve on the RRDi Board of Directors. She has a masters of science in biotechnology and is an excellent addition to the board.
  8. What I mean is, you are using the Bimectin topically, correct?
  9. The Bimectin is topical, correct? Does it list the inactive ingredients?
  10. Admin

    Understanding Blogs

    Introduction to Blogs Setting up and permissions Types of Blogs
  11. We have some instructions provided by IPS on how to use our forum. For example, watch this video on how to change your display name: Editing your profile Sending/Receiving messages General Posting Control Previewing post content Managing followed content How to Use CLUBS Two Factor Authentication Viewing Attachments Reputation & Reactions Custom Profile Fields User Ranks Post color highlighting Profile Completion Other Profile Settings
  12. Mechanism of Action Galderma has published two different statements about this (screenshots shown below): (1) "The mechanism of action (MOA) is not confirmed." (2) "The mechanism of action (MOA) of Soolantra® (ivermectin) Cream, 1% in treating rosacea lesions is unknown." Basis for the Vehicle However, we are concentrating on an investigation into the 'basis for the vehicle' statement by Galderma regarding Soolantra, which in the Soolantra News post if you scroll down to Cetaphil Base, Galderma in FOOT NOTE 4, we report about the 'basis for vehicle' which Galderma states the following: "Soolantra Cream combats inflammatory lesions of rosacea with a formulation designed for tolerability, utilizing Cetaphil® Moisturizing Cream as the basis for the vehicle." However, the original page is no longer available, but we have a screen shot of the Way Back Machine on August 21, 2018 which shows you the statement below: Soolantra mechanism of action (MOA) (Way Back Machine url) Actually after a careful search, Galderma has moved the statement that Cetaphil is the 'basis for the vehicle' statement to this page: https://www.soolantra.com/hcp/about-soolantra-cream Therefore, the current correct statement provided by Galderma is: "Soolantra Cream combats inflammatory lesions of rosacea with a formulation designed for tolerability, utilizing Cetaphil® Moisturizing Cream as the basis for the vehicle." SOOLANTRA (ivermectin) cream, 1% is a white to pale yellow hydrophilic cream. Each gram of SOOLANTRA cream contains 10 mg of ivermectin. It is intended for topical use. While the claim by Galderma that utilizing Cetaphil is 'basis for the vehicle' we have investigated and notice the differences with the inactive ingredients in Soolantra with the ingredients in Cetaphil below. SOOLANTRA cream contains the following inactive ingredients: carbomer copolymer type B, cetyl alcohol, citric acid monohydrate, dimethicone, edetate disodium, glycerin, isopropyl palmitate, methylparaben, oleyl alcohol, phenoxyethanol, polyoxyl 20 cetostearyl ether, propylene glycol, propylparaben, purified water, sodium hydroxide, sorbitan monostearate, and stearyl alcohol. Source Cetaphil Moisturizing Cream Ingredients: Water, Glycerin, Petrolatum, Dicaprylyl Ether, Dimethicone, Glyceryl Stearate, Cetyl Alcohol, Prunus Amygdalus Dulcis (Sweet Almond) Oil, PEG-30 Stearate, Tocopheryl Acetate, Acrylates/C10-30 Alkyl Acrylate Crosspolymer, Dimethiconol, Benzyl Alcohol, Phenoxyethanol, Glyceryl Acrylate/Acrylic Acid Copolymer, Propylene Glycol, Disodium EDTA, Sodium Hydroxide Source Compare Soolantra inactive ingredients to Cetaphil Moisturizing Cream Ingredients Google Sheet
  13. What is interesting is that Galderma claims Soolantra's base is Cetaphil. However, we did an investigation and compared Cetaphil's ingredients with the list shown in Soolantra and discovered there is a difference. For more information: Soolantra mechanism of action (MOA) SOOLANTRA (ivermectin) cream, 1% is a white to pale yellow hydrophilic cream. Each gram of SOOLANTRA cream contains 10 mg of ivermectin. It is intended for topical use. SOOLANTRA cream contains the following inactive ingredients: carbomer copolymer type B, cetyl alcohol, citric acid monohydrate, dimethicone, edetate disodium, glycerin, isopropyl palmitate, methylparaben, oleyl alcohol, phenoxyethanol, polyoxyl 20 cetostearyl ether, propylene glycol, propylparaben, purified water, sodium hydroxide, sorbitan monostearate, and stearyl alcohol. Source Cetaphil Moisturizing Cream Ingredients: Water, Glycerin, Petrolatum, Dicaprylyl Ether, Dimethicone, Glyceryl Stearate, Cetyl Alcohol, Prunus Amygdalus Dulcis (Sweet Almond) Oil, PEG-30 Stearate, Tocopheryl Acetate, Acrylates/C10-30 Alkyl Acrylate Crosspolymer, Dimethiconol, Benzyl Alcohol, Phenoxyethanol, Glyceryl Acrylate/Acrylic Acid Copolymer, Propylene Glycol, Disodium EDTA, Sodium Hydroxide Source Compare Soolantra inactive ingredients to Cetaphil Moisturizing Cream Ingredients Google Sheet
  14. With regard to flushing, it would be good to read this post. There are a number of drugs used to avoid flushing. There are also a number of other non prescription treatments to avoid flushing which are found here.
  15. Apurva, You may be interested in reading this post, Liver, Yogurt, Sour Cream, Cheese, Eggplant, and Spinach, in the research articles section of our website to get an understanding between the difference of a rosacea flareup trigger vs a flushing trigger.
  16. "In 2016, the definition of sensitive skin (SS) was established by a special interest group from the International Forum for the Study of Itch. SS is defined as a syndrome defined by the appearance of unpleasant sensations (stinging, burning, pain, pruritus, and tingling sensations) in response to stimuli that would not normally cause such sensations.....To our knowledge, only 2 transcriptomic studies have been performed for SS. ...As previously done with rosacea, these two studies provide very interesting data allowing, orientating and suggesting further research. Transcriptomic studies on larger populations are needed but these studies give key data to focus on some pathogenic mechanisms." Front Med (Lausanne). 2019; 6: 115. Sensitive Skin: Lessons From Transcriptomic Studies Adeline Bataille, Christelle Le Gall-Ianotto, Emmanuelle Genin, and Laurent Misery What if a non profit organization for rosacea gathered together 10,000 members, and each member donated one dollar and everyone agreed that a study on transcriptomic research be conducted? Could that be done? It is all up to you whether you think this would be worth investigating.
  17. An article published in the Daily Mail, Nerve injection that can stop the nightmare of hot flushes, by Robert Dobson, states, "An injection in the neck might ease the symptoms of hot flushes....known as a stellate ganglion nerve block." Many rosaceans are more concerned with avoiding flushing than with anything else. What exactly is stellate ganglion nerve block? The Cleveland Clinic answers, "A stellate ganglion block is used to diagnose or treat circulation problems or nerve injuries..." Cedars-Sinai states, "A stellate ganglion block (sympathetic block) is an injection of local anesthetic into the front of the neck." Rehabilitation & Orthopaedic Institute, University of Maryland states, "A stellate ganglion block is an injection of local anesthetic (numbing medicine) to block the sympathetic nerves located on either side of the voice box in the neck." One paper on this subject states, "Due to a high risk of side effects, for example, pneumothorax and vascular puncture, an image-guided approach is strongly suggested, even with the "safer" C6 approach." [1] "The inputs from sympathetic ganglia have been known to be involved in the pathophysiology of various conditions like complex regional pain syndrome (CRPS)" [2] Stellate ganglion block (SGB) "Stellate ganglion, also known as the cervicothoracic ganglion,....SGB is the oldest and most common sympathetic block that is applied today....There is a broad range of case studies that report the effectiveness of SGB in many different conditions. The outcomes may look promising, but expanding the indications of SGB needs more randomized, controlled studies." [2] End Notes [1] Treasure Island (FL): StatPearls Publishing; 2019 Jan-. Stellate Ganglion Blocks Emanuele Piraccini; Ke-Vin Chang. [2] J Pain Res. 2017; 10: 2815–2826. Ganglion blocks as a treatment of pain: current perspectives Osman Hakan Gunduz and Ozge Kenis-Coskun
  18. This article is found here. This article is found here.
  19. Rory, You will probably have better results using the horse paste over Soolantra, mainly because the horse paste is stronger ivermectin 1.87% over Soolantra's 1% and also because the inactive ingredients in the horse paste are simpler than Soolantra's list of inactive ingredients. So what brand of horse paste did you order? Also please be sure to post your results of taking oral ivermectin in the oral ivermectin post here. Just look at this comparison of horse paste inactive ingredients over Soolantra's inactive ingredients to see the difference: Eqvalan inactive ingredients: Hydrogenated Castor Oil, Titanium Dioxide (E171) 2.0% w/w., Hyprolose, Propylene Glycol Agri-Mectin inactive ingredients: Corn Oil, Polysorbate 80, Apple Flavor, and Aerosil. Soolantra's inactive ingredients: carbomer copolymer type B, cetyl alcohol, citric acid monohydrate, dimethicone, edetate disodium, glycerin, isopropyl palmitate, methylparaben, oleyl alcohol, phenoxyethanol, polyoxyl 20 cetostearyl ether, propylene glycol, propylparaben, purified water, sodium hydroxide, sorbitan monostearate, and stearyl alcohol. This simple comparison explains why more positive results are with horse paste because of its simple inactive ingredient list compared to the huge number of inactive ingredients in Soolantra which may explain why some like you and me may have a side effect of dryness or whatever. Probably the other horse paste brands have few inactive ingredients just as the two we did find above. The most popular horse paste, Durvet Paste doesn't list the inactive ingredients but it probably is a list of only three "Proprietary Components". Just about everyone reports it takes 12 weeks for clearance, but so do the positive reports using Soolantra, 12 weeks.
  20. More Women than Men Have Rosacea? In the past in medical literature on rosacea, the general consensus has been that more women have rosacea than men, particularly in certain variants of rosacea. Typical examples of medical authorities who report that more women than men have rosacea are shown below: Mayo Clinic "Rosacea can occur in anyone. But it most commonly affects middle-aged women who have fair skin." Under Risk Factors, the Mayo Clinic says, "you may be more likely to develop it if you are a woman." National Institute of Arthritis and Musculoskeletal and Skin Diseases Under the tab, Who gets rosacea? "Women, especially during menopause." American Osteopathic College of Dermatology "Rosacea is most common in white women between the ages of 30 and 60." National Institute of Health, Genetics Home Reference "For reasons that are unclear, women appear to be affected more often than men." New England Journal of Medicine "Women are more commonly affected than men, and rosacea has been shown to be particularly common among fair-skinned people of Celtic origin." [4] Medline Plus "Rosacea is most common in women and people with fair skin." John Hopkins Medicine "It is more common in fair-skinned people and women in menopause." UCLA also says, "is more common in fair-skinned people and women in menopause." Severity Scores Reveal More Men than Women Have Rosacea One report concluded, "Self-assessment severity scores were significantly higher in men (3.6 ± 1.3) than women (3.2 ± 1.0; P = .04).The authors conclude that rosacea is more severe in men and younger patients." [1] What Phenotype or Variant of Rosacea? It depends on which phenotype or variant of rosacea being discussed whether more women or more men have rosacea. We will use this post to collect papers on this subject. If you find any papers on this subject, please reply to this post what you have found. Glandular Rosacea Glandular rosacea, a variant of rosacea, occurs predominantly in males. Rosacea Lymphedema (Morbihan Disease) Also known as Morbihan syndrome, "a rare entity that more commonly affects women in the third or fourth decade of life." Phenotype 4 "Firstly, the papulo-pustular stage mainly occurs in males in whom rosacea is a more serious disease at all stages. The papulo-pustular stage is actually uncommon in females.” [2] Phenotype 5 Phenotype 5 occurs much more often in men than in women (approximate ratio, 20:1). [3] Rosacea Perioral Dermatitis Rosacea Perioral Dermatitis [POD], a rosacea variant, usually effects young females and results from topical steroid use. Overuse of heavy face creams and moisturizers are another common factor. Rosacea Fulminans (Pyoderma Faciale or Rosacea conglobata) This rosacea variant is possibly the most extreme form of Rosacea and usually only occurs in women. End Notes [1] Dermatol Clin. 2018 Apr;36(2):97-102. doi: 10.1016/j.det.2017.11.004. Epub 2017 Dec 16. Measurement of Disease Severity in a Population of Rosacea Patients. Alinia H, Tuchayi SM, James SM, Cardwell LA, Nanda S, Bahrami N, Awosika O, Richardson I, Huang KE, Feldman SR. [2] 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.The William J. Cunliffe Lectureship 2003—Manuscript [3] Phymatous Explained [4] N Engl J Med 2017; 377:1754-1764 DOI: 10.1056/NEJMcp1506630 Rosacea November 2, 2017, Esther J. van Zuuren, M.D.
  21. Rory, Soolantra is 1% ivermectin and the active ingredient.
  22. I have been taking the lutein/zeaxanthin which seems to dry up my skin some. Wrote a post about oral ivermectin. I would run this by my dermatologist before ingesting it. Topical ivermectin seems the best route.
  23. First off, if you don't know what Erythromelalgia is, it is listed as a rosacea mimic and should be ruled out in a differential diagnosis of rosacea. Someone kindly pointed out to me that The Erythromelalgia Association website is very user friendly and was impressed with the free Guide it offers on its website indicating to me that the RRDi needs to be more 'user friendly' and offering such a guide. So I decided to investigate and contacted TEA and asked for a copy of the latest Form 990 which was emailed to me and I have given a cursory investigation and am very impressed with how this 501 c 3 non profit organization spends its donations. First off, the board of directors are all volunteers. They have managed to bring in 3000 members, and more importantly in 2018 received over $50K in donations! They spent $103K which breaks down to this: $75,000 for Grants and similar amounts paid (list in Schedule O) "Gift for research directly related to erythromelalgia" $13,398 for Professional fees and other payments to independent contractors $14,230 for Printing, publications, postage, and shipping (newsletter) $884 for other expenses Total Expenses $103,512 Download Form 990 for 2018 and read it yourself: Form990Package.2018.pdf So this is definitely how a non profit organization should be run and I give the highest marks possible to TEA for how it is helping Erythromelalgia sufferers. We wish that the members of the RRDi would be interested in imitating the TEA and help make the RRDi just like how TEA is run. The RRDi is very similar in how the board of directors are volunteers. We just need volunteers to step up to plate like the TEA volunteers are doing. It would be good for members of the RRDi to ask questions about the above or comment on this post.
  24. "Better efficacy with IVM 1% cream (QD) compared to MTZ 0.75% cream (BID) contributes to an improved quality of life with significantly more patients achieving an MCID in DLQI score at week 16 and higher mean EQ-5D score. IVM 1% cream is thus a better alternative than MTZ 0.75% cream for severe papulopustular rosacea patients." Dermatol Ther (Heidelb). 2016 Sep; 6(3): 427–436. Superior Efficacy with Ivermectin 1% Cream Compared to Metronidazole 0.75% Cream Contributes to a Better Quality of Life in Patients with Severe Papulopustular Rosacea: A Subanalysis of the Randomized, Investigator-Blinded ATTRACT Study Martin Schaller, Thomas Dirschka, Lajos Kemény, Philippe Briantais, and Jean Jacovella -------------------------------------- "Ivermectin 1% cream was significantly superior to MTZ 0·75% cream and achieved high patient satisfaction." Br J Dermatol. 2015 Apr;172(4):1103-10. doi: 10.1111/bjd.13408. Epub 2015 Feb 11. Superiority of ivermectin 1% cream over metronidazole 0·75% cream in treating inflammatory lesions of rosacea: a randomized, investigator-blinded trial. Taieb A, Ortonne JP, Ruzicka T, Roszkiewicz J, Berth-Jones J, Peirone MH, Jacovella J; Ivermectin Phase III study group. --------------------------------------- "Topical ivermectin is an effective option in the treatment of papulopustular rosacea. Although ivermectin seems to be more effective than topical metronidazole, with both treatment options about two-thirds of patient relapsed within 36 weeks after discontinuation of treatment." Dermatol Ther (Heidelb). 2018 Sep;8(3):379-387. doi: 10.1007/s13555-018-0249-y. Epub 2018 Jun 25. Topical Ivermectin in the Treatment of Papulopustular Rosacea: A Systematic Review of Evidence and Clinical Guideline Recommendations. Ebbelaar CCF, Venema AW, Van Dijk MR. --------------------------------------- "Ivermectin 1% cream QD appears to be a more effective topical treatment than other current options for the inflammatory lesions of rosacea, with at least an equivalent safety and tolerability profile, and could provide physicians and dermatologists with an alternative first-line treatment option." Springerplus. 2016 Jul 22;5(1):1151. doi: 10.1186/s40064-016-2819-8. eCollection 2016. The efficacy, safety, and tolerability of ivermectin compared with current topical treatments for the inflammatory lesions of rosacea: a network meta-analysis. Siddiqui K, Stein Gold L, Gill J.
  25. Another study showing the superiority of ivermectin over metronidazole has been published by NEJH Journal Watch. 399 rosacea patients enrolled in a study who were judged clear after receiving 16 weeks of ivermectin treatment and stopped the ivermectin treatment. Those that had a greater IGA score of ≤2 (which means some pimples/redness returned) "resumed their original topical treatment until remission was again obtained" whether it was ivermectin or metronidazole. The study showed that the relapse rate of rosacea was more days than those using the metronidazole treatment, in other words, the number of days to the relapse of rosacea was higher in the ivermectin group than the metronidazole group. The study concluded, "The relapse rate by study end at 36 weeks was lower for IVER recipients (62.7%) than MET recipients (68.4%)." Metronidazole vs. Ivermectin Mark V. Dahl, MD reviewing Taieb A et al. J Eur Acad Dermatol Venereol 2015 Dec 21 Which drug for remission of rosacea? ------------------------------------------------ "The results of this relapse study showed that an initial successful treatment with ivermectin 1% cream QD significantly extended remission of rosacea compared with initial treatment with metronidazole 0.75% cream BID following treatment cessation." J Eur Acad Dermatol Venereol. 2016 May;30(5):829-36. doi: 10.1111/jdv.13537. Epub 2015 Dec 21. Maintenance of remission following successful treatment of papulopustular rosacea with ivermectin 1% cream vs. metronidazole 0.75% cream: 36-week extension of the ATTRACT randomized study. Taieb A, Khemis A, Ruzicka T, Barańska-Rybak W, Berth-Jones J, Schauber J, Briantais P, Jacovella J, Passeron T; Ivermectin Phase III Study Group -----------------------------------------------
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