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Guide

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  1. 2 hours ago, Ashley Auld said:

    I’m wondering if anyone has continued this treatment and would share results. I took my first oil today and plan to continue to just for the antioxidant effects. 
    I wake up with a few to many p&ps daily and am experimenting with the results.

    I continue to take the Puritan Pride Lutein/Zeazanthin because I do think it helps dry my oily skin and as you point out, for the 'antioxidant effects' and I think it is similar to taking an oral retinoid since Lutein/Zeazanthin is actually a xanthophylls (carotenoid) that 'is a virulence factor with an antioxidant action that helps the microbe evade death by reactive oxygen species used by the host immune system."  

    It may improve the eyes as well. We haven't had other anecdotal reports that it clears rosacea as Marcel the attorney raves about in his initial report. Keep us posted on your results. It has not cured my rosacea, but I still think it is worth taking daily. I take one a day. 

  2. UPDATE

    "The study concluded that treatment with hydroxychloroquine significantly reduces the death rate of COVID-19 patients, Zervos said. Of those treated with hydroxychloroquine alone, 13% of them died, compared to the 26.4% who died and were were not treated with the drug. There was an overall 18.1% in-hospital mortality rate and patients were over the age of 18, with a median age of 64."

    Hydroxychloroquine is effective in treating COVID-19, says Henry Ford Health System study, Andrew Mullin, MLive

  3. 320px-Determinants_of_Gastric_Acid_Secretion.svg.png
    Diagram depicting the major determinants of gastric acid secretion, with inclusion of drug targets for peptic ulcer disease (PUD) and gastroesophageal reflux disease (GERD). Image courtesy of Wikimedia Commons

    Proton Pump Inhibitors Theory
    One of the systemic cormorbidities in rosacea is the use of Proton Pump Inhibitors (PPIs).

    What are PPIs? 

    "Proton-pump inhibitors (PPIs) are members of a class of medications whose main action is a profound and prolonged reduction of stomach acid production." [1] These include omeprazole, lansoprazole and the antibiotics clarithromycin and amoxicillin.

    Why are they called proton pump inhibitor?

    "They are called 'proton pump inhibitors' because they work by blocking (inhibiting) a chemical system called the hydrogen-potassium adenosine triphosphatase enzyme system (otherwise known as the 'proton pump'). This chemical system is found in the cells in the stomach lining that make stomach acid." [2]

    What do PPIs do that is related to causing rosacea? 

    One of the related rosacea theories is the Low Gastric Acid and Rosacea which has been around for sometime now, back to a paper in 1931 by Epstein and Susnow. [3] 

    PPIs inhibit gastric acid production. 

    What happens in the stomach without a doubt is related to what happens in the gut. There are a number of rosacea theories related to the gut, i.e, IBD and Rosacea, IBS and Rosacea,  SIBO and Rosacea, and Rosacea and the Gut. GUT Rosacea is listed as a variant of rosacea. H Pylori (Helicobacter Pylori) in the gut has been a subject of investigation with rosacea for sometime now and continues to be investigated in clinical papers. 

    Antibiotics have been the mainstay of medical treatment for rosacea, particularly those medicines derived from tetracycline, i.e., doxycycline, which work in the gut and has an effect on the stomach and bowel microbiota. The vast majority of rosacea patients have taken antibiotics, usually high dose for a significant period of time or low dose for even much longer periods. There is evidence that PPIs may even contribute to antibiotic resistance. [4]

    PPIs Systemic Cormorbidity in Rosacea Related to Gastric Acid Reduction
    One paper concluded, "In conclusion, prolonged PPI use was associated with an increased risk of rosacea, particularly in women and patients with peptic ulcers." [5]

    Theory
    Therefore, the theory that the use of PPIs may have a relationship in causing rosacea. Obviously not all rosacea sufferers have used PPIs so this is just one theory among the long list. For example, one theory is that rosacea is caused by demodex mites, but not all rosacea sufferers have any increase in demodex mites and treatment for demodex doesn't improve the rosacea, nevertheless, the theory is still listed since some rosacea sufferers respond well to treatment for demodectic rosacea. Ergo, the PPI and rosacea theory stands. A theory. 

    End Notes

    [1] Proton-pump inhibitors, Wikipedia

    [2] Proton Pump Inhibitors, Dr Laurence Knott, Patient

    [3] Cal West Med. 1931 Aug;35(2):118-20.
    ACNE ROSACEA: WITH PARTICULAR REFERENCE TO GASTRIC SECRETION.
    Epstein N, Susnow D.
    ACNE_ROSACEA_GASTRIC_SECRETION_Hypochlorhydria_Acid_Epstein_1931.pdf 

    [4] JAMA Intern Med 2020 Feb 24
    Does Gastric Acid Suppression Encourage Antibiotic Resistance?
    Abigail Zuger, MD reviewing Willems RPJ et al. JAMA Intern Med 2020 Feb 24 Lee TC and McDonald EG. 

    J Clin Microbiol. 2005 Jul; 43(7): 3059–3065.doi: 10.1128/JCM.43.7.3059-3065.2005
    Effect of pH and Antibiotics on Microbial Overgrowth in the Stomachs and Duodena of Patients Undergoing Percutaneous Endoscopic Gastrostomy Feeding
    Graeme A. O'May, Nigel Reynolds, Aileen R. Smith, Aileen Kennedy, and George T. Macfarlane

    [5] J Dermatol. 2020 Jul 01;:
    Use of proton pump inhibitors and risk of rosacea: A nationwide population-based study.
    Dai YX, Tai YH, Chen CC, Chang YT, Chen TJ, Chen MH

  4. 306px-Rubus_occidentalis_2008_07_06.jpg

    An interesting title to an article, "Eating black raspberries might reduce inflammation associated with skin allergies, a new study indicates" [1] intrigued me into an investigation. My wife commented that blackberries are the same. A cursory Google search said otherwise. [2] Wikipedia shows after entering 'black raspberry,' "Not to be confused with blackberry. Black raspberry is a common name for three species of the genus Rubus." Ironically, Rubus is part of the Rosaceae family. The one used in this clinical study was Rubus occidentalis (above image courtesy of Wikimedia Commons). 

    The article refers to a clinical investigation paper that was "funded by National Cancer Institute (NCI/NIH), grant number K01CA207599 awarded to S.O., and the Ohio State University Foods for Health (FFH) Discovery Theme & Food Innovation Center (FIC) Seed Grant awarded to S.O. and USDA Hatch Funds (OHO01470) awarded to J.L.C." [3] Currently I am noticing where authors are getting the money to study such novel investigations like 'black raspberries,' since the RRDi would love to research novel studies like this for rosacea but can't drum up the money and rosaceans are not donating and have left for all the social media private rosacea groups chattering the same as they did twenty years ago about rosacea and doing nothing constructive about researching rosacea. Why they continue to support the status quo rosacea research mostly sponsored by pharmaceutical companies baffles my mind. [4]

    This isn't an easy read nor for the novice so you may want to stick to what Emily Henderson wrote about this subject. [2] But if you want to deep dive into this a little more I noticed some facts that Emily doesn't mention. For example, the authors state, "Recent studies have shown that diet plays a significant role in mitigating the development of allergic illnesses, with the consumption of antioxidant rich foods shown to be particularly efficacious in reducing allergic responses." [3] If you search you will find that there are a number of foods considered rich in antioxidant besides black raspberries, but it sounds way more interesting to eat black raspberries than say kale or spinach, not to mention the fun of it. 

    Emily failed to mention that the authors of the study supplemented Protocatechuic acid (PCA), a 'gut microbial metabolite of anthocyanins' with not the fresh fruit black raspberries, but instead used "5% w/w freeze-dried black raspberry (BRB) powder sensitized with DNFB (n = 5), or AIN-76A."  The authors seem more interested in the synergistic effect of PCA with BRB. PCA occurs in nature, i.e., green tea has lots of it. Here are some tidbits Emily didn't detail: 

    (1) Used 2.4-dinitrofluorobenze (DNFB) to recapitulate the human disease Contact hypersensitivity (CHS).

    (2) Four groups of mice were used for the study, all female, in groups of five mice. Each group had different diets, first group had 'standardized minimal nutrient rodent chow AIN-76A sensitized with vehicle only (n = 5),' second group had 'minimal nutrient rodent chow AIN-76A sensitized with DNFB (n = 5),' third group had 'AIN-76A supplemented with 5% w/w freeze-dried black raspberry (BRB) powder sensitized with DNFB (n = 5),' and the fourth group 'AIN-76A supplemented with 500 ppm protocatechuic acid (PCA.' 

    The authors conclude, "In summary, we demonstrate that the dietary intake of BRB and its anthocyanin metabolite PCA have an inhibitory effect on CHS. We also distinguish between PCA specific immunomodulatory effects and the global effects of the complex mixture of BRB phytochemicals on the pathways associated with CHS."

    So while this is an interesting subject, I would be careful eating a lot of black raspberries since the fructose in fresh berries can initiate a rosacea trigger, notwithstanding the antioxidant effect. [5] Maybe if you skin is clear, you may have a small bowl which would be nice and who knows, maybe fresh black raspberries might be good for rosacea? Maybe a little. Just watch out for the fructose!

    Reply to this Topic
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    End Notes

    [1] Eating black raspberries might reduce inflammation associated with skin allergies, a new study indicates, Emily Henderson, B.Sc., News-Medical.Net

    [2] THE DIFFERENCE BETWEEN BLACK RASPBERRIES AND BLACKBERRIES, Black Raspberry Buzz

    Huff Post concurs: 
    Blackberry vs Black Raspberry: What's The Difference?, By Julie R. Thomson, Huff Post

    [3] Nutrients. 2020 Jun 6;12(6):E1701.  doi: 10.3390/nu12061701. Full Text
    Black Raspberries and Protocatechuic Acid Mitigate DNFB-Induced Contact Hypersensitivity by Down-Regulating Dendritic Cell Activation and Inhibiting Mediators of Effector Responses
    Kelvin Anderson, Nathan Ryan, Arham Siddiqui, Travis Pero, Greta Volpedo, Jessica L Cooperstone, Steve Oghumu 

    [4] Rosacea Research in Perspective of Funding

    [5] Sugar = Rosacea Fire

  5. differin.png

    Topical retinoids are mainly used for acne but there are some dermatologists prescribing Rx topical retinoids for rosacea, i.e., Differin (adapalene), Retin-A Micro (Tretinoin Microspheres), Tazret (Tazarotene), and others. "Also referred to as retinoic acid or vitamin A acid, topical retinoids are available as gels, ointments, creams, or foams to be applied directly to the skin. They work by promoting the exfoliation of dead skin cells as well as by boosting the production of new skin cells. The new cells then push dead cells and excess oil out of blocked pores. Retinoids also have anti-inflammatory properties." [1]

    "As an intermediary step between topical antibiotics and oral isotretinoin, we propose that topical tretinoin may be effective in the management and reduction of rosacea symptoms,” Emily Forward, MD, of the University of Sydney, said at the meeting. There has been recent discussion regarding the use of low-dose isotretinoin in the treatment of rosacea, but safety with long-term use is an issue, she noted." [2]

    "Expert groups and evidence-based guidelines agree that topical retinoids should be considered the foundation of acne therapy." So this article explains the increased use of retinoids by physicians over antibiotics since there is concern over antibiotic resistance. This article states, "The use of retinoids plus BPO targets multiple pathways and can often eliminate the need for antibiotics, reducing the likelihood of antibiotic resistance." [3]

    "Topical retinoids have clearly demonstrated benefit in rosacea. "Some dermatologists choose to avoid them, because they are more difficult to use, but over the long term, they really do make a difference for these patients," Dr. Pelle says. "In my experience, at one month you get an improved skin texture, at four months flushing is much less frequent, and at one year there is a normal flush response, substantially decreased redness and few to no flares requiring tetracyclines." " [4]

    There is a thread at RF that inspired this post. [5]

    There are a number of over the counter retinols available in our affiliate store. [6] 

    What is the difference between a retinol and a retinoid? "Essentially, retinol is just a specific type of retinoid." [7]

    End Notes

    [1] What to Know About Topical Retinoids for Acne, Heather L. Brannon, MD, very well health 

    [2] Topical tretinoin resolves inflammatory symptoms in rosacea, in small study

    [3] Increased Retinoid Therapy for Acne

    [4] 'Subtype-directed' approach targets rosacea, Jan 01, 2005, DermatologyTimes

    [5] Retinoid highly recommended by top-rated dermatologist on RRDi, beherenow

    [6] https://irosacea.org/search/?q=retinol&quick=1

    [7] What’s the Difference Between Retinol and Retinoids, Marissa Laliberte, Reader's Digest

  6. We are pleased to announce that members can now post REVIEWS in our affiliate store. Here is a screen shot of a review:

    sufurbutterreview.png

    In the screen shot above the review can be viewed if you click on the tab PRODUCT REVIEWS and MEMBERS can RESPOND TO THIS REVIEW. So if you find an item in our store and you have used the item and want to review it all you do is, (1) Find the item in the store, (2) login with your RRDi account (only requires registering with an email address), (3) Scroll down to the product information tab and next to this tab find the PRODUCT REVIEWS tab and click on it. (4} Find the WRITE A REVIEW black button and click on it (5) Write your review in the comment box

    rrditeeshirtwriteareview.png

  7. gpskin.png

    Stratum corneum hydration (SCH) is a measurement useful for assesing the outermost layer of the epidermis. 

    "Transepidermal water loss (TEWL or TWL) is the loss of water that passes from inside a body (animal or plant) through the epidermis (that is, either the epidermal layer of animal skin or the epidermal layer of plants) to the surrounding atmosphere via diffusion and evaporation processes." Wikipedia

    A paper concluded that the GPSkin® Barrier device "determines TEWL and SCH accurately in healthy and impaired skin barrier state and can monitor skin barrier function in rosacea during treatment. The GPSkin device is much more practical compared to previous skin barrier tools when used in clinical practice.' [1]

    "Based on these findings, we concluded that GPSkin provides reasonably precise and reliable measurements of SC hydration and TEWL as compared to current devices." [2]

    "GPSkin Barrier® is a reliable, affordable, and versatile device for assessing epidermal permeability barrier function and SC hydration."[3]

    "Transepidermal water loss (TEWL) is the amount of water that passively evaporates through skin to the external environment due to water vapor pressure gradient on both sides of the skin barrier and is used to characterize skin barrier function." [4]

    "Now, over half of world’s top 10 skincare brands have already adopted the gpskin Barrier (www.gpower.kr) as a skin diagnostic device." [5]

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

    More information on diagnosing rosacea

    End Notes

    [1] Skin Res Technol. 2020 Jun 23;:
    Value of GPSkin for the measurement of skin barrier impairment and for monitoring of rosacea treatment in daily practice.
    Logger JGM, Driessen RJB, de Jong EMGJ, van Erp PEJ

    [2] Skin Res Technol. 2019 Sep;25(5):612-617.  doi: 10.1111/srt.12692.  Epub 2019 Apr 3.
    Validation of a Novel Smartphone Application-Enabled, Patient-Operated Skin Barrier Device
    Erin E Grinich , Anuja V Shah, Eric L Simpson 

    [3] Skin Res Technol. 2019 Jan;25(1):25-29.  doi: 10.1111/srt.12590. Epub 2018 Jun 4.
    Validation of GPSkin Barrier ® for Assessing Epidermal Permeability Barrier Function and Stratum Corneum Hydration in Humans
    L Y , Z Wang, Z Li, C Lv, M-Q Man 

    [4] Science Direct
    Transepidermal Water Loss, Skin Structure and Function
    Golara Honari, Howard Maibach, in Applied Dermatotoxicology, 2014

    [5] Dematology.com

    GPOWER-2.png

  8. AAFvsMC-MG.png

    Azelaic Acid 15% Foam (AAF) vs Metronidazole Cream (MC) and Metronidazole Gel (MG)

    "MG- and MC-treated patients more frequently reported treatment concerns and side effects than AAF-treated patients, and tolerability of those side effects was higher for patients treated with AAF. While treatment cost is a more frequent concern in patients treated with AAF, these patients less frequently reported concerns with treatment efficacy and reported similar or greater tolerance to side effects than patients treated with either MC or MG."

    J Drugs Dermatol. 2020 Mar 01;19(3):295-304
    Rosacea Treatment Satisfaction: Matching Adjusted Indirect Treatment Comparison Analysis of Metronidazole Gel or Cream vs Azelaic Acid Foam.
    Williamson T, LaRose A, Cameron J, Lott J, Eaddy M, Hopson S, Shih HC, Tennant LT

    Conclusion
    So according to the above paper you probably should consider AAF over MC/MG and refer this paper to your dermatologist who is prescribing metronidazole instead of azelaic acid

  9. The controversy about hydroxychloroquine continues.

    "Not all researchers have given up on the drug, however, and recent developments show it is not yet dead as a potential weapon against COVID-19, especially as a preventative in people not yet exposed to the virus." 

    Hydroxychloroquine is not dead yet, Lisa Cavazuti, NBC News

    ---------------------------------------------------------------------------------------------------

    "Once praised as a miracle cure for covid-19, an antimalarial drug called hydroxychloroquine has rarely been out of the headlines since the start of the pandemic. It was hoped it might find a new use as a therapy in patients who are unwell with the novel coronavirus. But in recent weeks a scientific picture has emerged of a treatment that does not appear to be helping patients at all, and might even be causing harm.

    Whether it helps seems clear now: it doesn’t. When it comes to the harm, though, it turns out that the scientific literature may be misleading. On June 4th the Lancet, a respected medical journal, retracted a high-profile paper published only a month previously. This had suggested that hydroxychloroquine and its analogue, chloroquine, actually increased the death rate in hospitals when taken by those with covid-19. This led the World Health Organisation to halt its trials of the drug. It also caused considerable concern to patients and to those enrolled on other such trials."

    Hydroxychloroquine is embroiled in yet more controversy, The Economist

  10. imageJ.png

    "ImageJ is a Java-based image processing program developed at the National Institutes of Health and the Laboratory for Optical and Computational Instrumentation (LOCI, University of Wisconsin)." [1]

    ImageJ for Rosacea
    "ImageJ is a simple, rapid, objective and reproducible tool to monitor erythema in rosacea patients during treatment. The photographs allow retrospective analysis, evaluation of large and small lesions, and discrimination of subtle redness differences." [2]

    Open Source Java
    "ImageJ Ops is a framework for reusable image processing operations. Ops extends Java's mantra of "write once, run anywhere" to image processing algorithms." [3]

    "ImageJ and its Java source code are freely available and in the public domain. No license is required." [4]

    imageJ.png

    Download

    Reply to this Topic

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    End Notes

    [1] ImageJ, Wikipedia

    [2] Skin Res Technol. Nov; 26(6): 804–812.
    Evaluation of a simple image-based tool to quantify facial erythema in rosacea during treatment.
    Logger JGM, de Jong EMGJ, Driessen RJB, van Erp PEJ

    [3] "ImageJ is an open source Java image processing program inspired by NIH Image. It runs on any computer with a Java 1.8 or later virtual machine." ImageJ About 

    [4] ImageJ Features

     

  11. mexidol.png

    A paper concludes, "The developed complex treatment of rosacea patients with combined and differentiated use against the background of standard therapy of antihistamines with anti-inflammatory activity of fast (containing bilastine) and prolonged action (ketotifen fumarate) and antioxidant drug ethylmethylhydroxypyridine succinate significantly improves both the immediate and long-term clinical results of treatment of such patients." [1]

    Ethylmethylhydroxypyridine is Emoxypine (2-ethyl-6-methyl-3-hydroxypyridine). [2] It is also called Mexidol or Mexifin.

    Emoxypine is similar to pyridoxine, which has been discussed improving SD at this post at RF

    It is available non prescription at Amazon through the RRDi Affiliate Store: 

    Emoxypine Capsules (125mg x 60 capsules $26.99)

    Emoxypine (Mexidol) Succinate (125mg x 28 capsules $69.99)

    Emoxypine Succinate Capsules (125mg x 60 capsules $19.99 )

    Emoxypine Succinate Powder (30 grams $54.99)

    Mexidol 50 Tablets (125mg x 50 tablets $26.50)

    Anecdotal Reports
    There are no known reports thus far. You could be the first one if you try it and find the green reply button and reply to this post. Mknlvi at RF started a thread on this subject and was the original source of this information. 

    End Notes 

    [1] DOI: https://doi.org/10.37321/dermatology.2019.3-4-04
    Comprehensive treatment of rosacea patients taking into account the indicators of inflammatory mediators and the state of prooxidant-antioxidant homeostasis

    [2] Emoxypine, Wikipedia

  12. Thanks to David Pascoe at RSG, "A pre-proof version of an article to appear in the Journal of the American Academy of Dermatology details a small double blind study that found that oral hydroxychloroquine 200 mg twice a day offered similar benefits to rosacea sufferers compared to doxycycline 100 mg a day." [1]

    End Notes

    [1] Hydroxychloroquine works same as doxycycline for rosacea, David Pascoe, RSG

    Am Acad Dermatol. 2020 May 18;S0190-9622(20)30915-4.  doi: 10.1016/j.jaad.2020.05.050. Online ahead of print.
    Efficacy and Safety of Hydroxychloroquine for Treatment of Patients With Rosacea: A Multi-Center, Randomized, Double-Blind, Double-Dummy, Pilot Study
    Ben Wang, Xin Yuan, Xin Huang, Yan Tang, Zhixiang Zhao, Bin Yang, Baoqi Yang, Yue Zheng, Chao Yuan, Hongfu Xie, Ji Li 

  13. consentyx.png

    Secukinumab has been in clinical trial since 2017. A recent update from Healio states, "Patients treated with secukinumab for papulopustular rosacea saw significant improvements in quality of life and reduction of severity markers, according to a study presented at the American Academy of Dermatology virtual meeting." [1]

    Cosentyx is the brand name for secukinumab, which "is a human IgG1κ monoclonal antibody that binds to the protein interleukin (IL)-17A, and is marketed by Novartis for the treatment of psoriasis, ankylosing spondylitis, and psoriatic arthritis. It inhibits a member of the cytokine family, interleukin 17A." [2] 

    "Secukinumab is a recombinant fully human IgG1/kappa monoclonal antibody and is manufactured in Chinese hamster ovary cells." [2]

    "Study participants received 300 mg of secukinumab weekly for five weeks, and then monthly for two months....Among the 17 patients who were available for the final analysis, results showed a significant reduction in papule count at the 16-week follow-up, with a median decrease of -5 papules." [3]

    How does Cosentyx work? 
    The following video, while it explains how it works for psoriasis, the principles shown in the animated video explain how it works for rosacea. 

    cosentyxconnect.png
    The Cosentyx Connect Personal Support Program may help in savings and other options. 

    Anecdotal Reports

    There is a thread at RF where at least two anecdotal reports of using Cosentyx is reported. [4]

    Reply to this Topic
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    End Notes 

    [1] Clinical Trials, Third Post, RRDi 

    [2]  Secukinumab, Wikipedia

    [3] IL-17 inhibition a path of interest in rosacea treatment, July 8, 2020, Ilya Petrou, M.D., Dermatology Times

    [4] Jedimaster2cool started the thread and Dan3dwards reports he has joined the clinical trial in this thread at RF.  

  14. "The U.S. Food and Drug Administration revoked its emergency authorization for hydroxychloroquine, a controversial malaria drug promoted by President Donald Trump for treating the coronavirus. The agency said in a letter the decision is based on new evidence that made it unreasonable to believe hydroxychloroquine and chloroquine "may be effective in diagnosing, treating or preventing" COVID-19, the illness caused by the virus."

    Hydroxychloroquine: FDA pulls emergency use of malaria drug touted by Trump to treat the coronavirus
    Adrianna Rodriguez
    USA TODAY

  15. "The U.S. Food and Drug Administration revoked its emergency authorization for hydroxychloroquine, a controversial malaria drug promoted by President Donald Trump for treating the coronavirus. The agency said in a letter the decision is based on new evidence that made it unreasonable to believe hydroxychloroquine and chloroquine "may be effective in diagnosing, treating or preventing" COVID-19, the illness caused by the virus."

    Hydroxychloroquine: FDA pulls emergency use of malaria drug touted by Trump to treat the coronavirus
    Adrianna Rodriguez
    USA TODAY
     

     

  16. If you are convinced that avoiding sugar/carbohydrate improves your rosacea or other skin issue, yet you have a sweet tooth, you probably are on a search for zero calorie sugar substitutes. Of course, in the USA, the ones offered are massive, which a partial list is shown below may have zero calories or at the very least low calories. 

    sugarsubstitutes.png
    Image courtesy of Rosacea 101: Includes the Rosacea Diet, Brady Barrows

    So which one should you use? Of course, your preference is the king of decisions, but which one would be the most natural or healthiest one to use in this list?

    Stevia
    For years, Stevia was the one most health authorities choose. However, according to Healthline, "The use of stevia in foods is a bit confusing. The FDA Trusted Source hasn’t approved whole leaf or crude stevia extracts as a food additive. Despite being used for centuries as a natural sweetener, the FDA considers them unsafe. They claim literature indicates stevia in its most natural form may affect blood sugar. It may also affect reproductive, renal, and cardiovascular systems."

    Medical News Today points out, "Some people have allergic reactions to steviol glycosides that are not extremely pure. Stevia is part of the Asteraceae plant family, which includes daisies, sunflowers, and chrysanthemums. Anyone with allergies to these plants or others in the family should avoid stevia products."

    Luo Han Guo (Monk Fruit or Siraitia grosvenorii)
    Therefore, Luo Han Guo (Siraitia grosvenorii or monk fruit) is emerging as a better choice. The safety is beyond any doubt since it is generally recognized as safe (GRAS) by the U.S. Food and Drug Administration. "The plant is most prized for its sweet fruits, which are used for medicinal purposes and as a sweetener. In traditional Chinese medicine, it is used for cough and sore throat and in southern China it is believed to be a longevity aid. The fruits are generally sold in dried form, and traditionally used in herbal tea or soup." [1]

    320px-Fructus_Momordicae.jpg
    (image courtesy of Wikimedia Commons)

    Monk Fruit 
    "The interior fruit is eaten fresh, and the rind is used to make tea. The monk fruit is notable for its sweetness, which can be concentrated from its juice. The fruit contains 25 to 38% of various carbohydrates, mainly fructose and glucose. The sweetness of the fruit is increased by the mogrosides, a group of triterpene glycosides (saponins). The five different mogrosides are numbered from I to V; the main component is mogroside V, which is also known as esgoside." [1]

    Monk fruit is available in liquid, granule, and powder forms and  is safe for children, pregnant women, and breast-feeding women. Monk fruit gets its sweetness from antioxidant mogrosides. One study found monk fruit extract has the potential to be a low-glycemic natural sweetener. [2] Another study concluded mogrosides may help reduce oxidative stress. [3]

    Available in the RRDi Affiliate Store

    Namanna Organic Monk Fruit Natural Sweetener

    NatriSweet Monk Fruit Extract

    Now Foods, Organic Monk Fruit Liquid

    End Notes

    [1] Siraitia grosvenorii, Wikipedia

    [2] Yao Xue Xue Bao. 2009 Nov;44(11):1252-7.
    Insulin Secretion Stimulating Effects of Mogroside V and Fruit Extract of Luo Han Kuo (Siraitia Grosvenori Swingle) Fruit Extract
    Ying Zhou, Yan Zheng, Jeff Ebersole, Chi-fu Huang

    [3] Braz J Med Biol Res. 2013 Nov; 46(11): 949–955.
    Antioxidant effect of mogrosides against oxidative stress induced by palmitic acid in mouse insulinoma NIT-1 cells
    Q. Xu, S.Y. Chen, L.D. Deng, L.P. Feng, L.Z. Huang, and R.R. Yu

  17. aquavive700.png

    Just received today Tom Busby's AquaVive shampoo. If you haven't heard about it, you will. Tom is the SD Expert Extraordinaire at RF and formulated the shampoo. I will update my progress with this thread. The details on this can be read below in this pdf: 

    Review_of_OTC_Treatments_for_Malassezia _skin_conditions-for_Aquavive.pdf

    Tom Busby has given the RRDi permission to post his email address if you want to know more about this shampoo which we are doing this pro bono: 

    busbylaw@cox.net

    Tom also makes a lotion.

    Be sure to mention to Tom that you read about this at the RRDi. Read the list of ingredients below: 

    aquavive_ingredients.png

     

    Reply to this Topic
    There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

  18. grassroots.png

    Invision Community
    "Grassroots movements are associated with bottom-up, rather than top-down decision making, and are sometimes considered more natural or spontaneous than more traditional power structures." [1] We have chosen the Invision Community platform to interface between members (allowing also a private Tapatalk private forum). We prefer this over the social media platforms which are obviously more popular, however, we do have accounts with the major social media platforms if you prefer that sort of engagement (scroll down to the subheading RRDi Social Media Accounts). If you are interested in volunteering at any of the social media RRDi accounts please join and volunteer (mention this when you register that you would like to volunteer to post in one of the RRDi social media accounts, i.e., Facebook, Instagram, Reddit, etc.). We need volunteers to moderate the RRDi social media accounts! Watch this short less than one minute trailer:

    7 minute 27 second grassroots video: 

    Social Media Groups are Top Down Decision Making 
    All the rosacea social media groups (except those run by the RRDi) are top-down decision making groups. Whoever runs the group, i.e., Facebook, Instagram, Reddit, Twitter, etc., make all the rules and you have no choice who runs the group. Whoever 'owns' the group makes all the decisions (rules) and are not grassroots decision making. There are few, if any, social media groups that are grassroots, letting the members make the decisions on how the social media group is run. The exception is our RRDi social media accounts which allows the members to choose who sits on the board of directors of the RRDi. The reason we are explaining this is that all the rosaceans have gone to social media. It you want to volunteer and manage or be a moderator of the RRDi Social Media accounts read this post and watch the video about volunteering

    RRDi Grassroots Organization
    The RRDi is a grassroots organization founded by rosacea sufferers who are volunteers. The board of directors are all rosacea sufferers and their motive to  volunteer is to help rosacea sufferers. Now compare that with who serves on the 'other' rosacea non profit organizations board of directors. [2] As far as we know there are only three other rosacea non profit organizations (ARSC, AARS, and NRS) and possibly one other, the AAD that might spend a tiny, tiny bit of money on rosacea research. All the board members of these 'other' non profits are NOT rosacea sufferers and are mostly comprised of businessmen and medical professionals (dermatologists) who have a vested interest in rosacea since they may receive a salary or benefit from money spent on private contractors used by the non profit organization, or receive compensation for attending conventions or meetings sponsored by the non profit organization. Follow the money where the non profit spends the most of its donations on, and if you take the time, you will discover it is very little on rosacea research. Why not watch the video on rosacea research to get you up to speed?

    You may wonder how non profits work?

    The members of the RRDi are mostly rosacea sufferers [rosaceans] and have a say who serves on the board of directors of the RRDi (the charter requires that the board members suffer from rosacea). The board of directors of the RRDi are sometimes chosen by the other board members but every five years the voting members of the RRDi may vote who may continue to serve on the board of directors. The members could replace the entire board of directors. This is bottom up decision making. 

    The other rosacea non profit organizations are NOT grassroots and work from the top down. How do the other rosacea non profit organizations choose their board members? Answer: Top down decision making. 

    What Motivates Board Members?
    Money is the motive on who makes the decisions on the spending of the donations with the 'other' top down rosacea non profits and if you follow the money you will find that the board of directors make sure they benefit in some monetary way. This is a top down direction since the other non profits are run by NON rosaceans and have their own personal agenda so that members of the board somehow benefit with some compensation with the spending of the donations. Money is usually at the root of any top down decision making process. 

    Grassroots Motive
    So if you have similar grassroots philosophy why not join the RRDi and volunteer. If money is your motive, go to the 'other' rosacea non profits. [2] If volunteering by helping other rosaceans is your motive, you have found the only grassroots rosacea non profit organization on planet earth. [3]

    Only One Non Profit Organization Run by Rosaceans
    There is only one non profit organization for rosacea founded by rosacea sufferers, this one, the RRDi. All the others are founded by non rosaceans and all you do is see who is serving on the board of directors and note how the board members on each rosacea non profit benefit how the donations are spent (each board determines how the donations are spent). Follow the money (where does most of the donations end up being spent on?).

    Donations Spent on What?
    If you could gather together say 10K rosaceans into one non profit organization for rosacea and fund a paper on a rosacea topic and receive from each member donating just one dollar, it would be a cinch to get a reputable medical clinician to investigate further into whatever topic is chosen and nail it to the wall with a double blind, placebo controlled, peer reviewed study. However, if you did get 10K rosaceans together to donate each $1 that would be a miracle in itself. What might that subject be? Alas, this dream, which began over sixteen years ago with the RRDi was formed, hasn't brought about such unity among rosacea sufferers. Instead, rosacea sufferers are splintered into private social media groups, i.e., Facebook, Instagram, Reddit, etc. and continue to parrot the non profit organizations for rosacea that are run by non rosacea board members with a top down decision making process.  And rosaceans prefer and love it that way. Do these social media rosacea private groups engage in any rosacea research? What do you think?

    Grassroots Glimmer of Hope for Rosacea
    However, there is perhaps a glimmer of hope. The owner of the Rosacea Forum, rosaceagroup.org, formed a non profit organization [RRF] in 2004 and gathered together a group of rosacea sufferers and collected a total of $16K and donated all of this to the NRS. So, it can be done. However, the RRF non profit for rosacea dissolved. What happened? Read for yourself. This example of the RRF is a grassroots non profit that actually did something in sponsoring their own research, except they gave the $16K to a non profit that is run from the top down. A brief glimmer of grassroots hope for rosacea. The RRF was a flicker of light in a dark rosacea world. 

    Grassroots Non Profits Beacon of Light
    An example of an excellent grassroots non profit organization beacon of light is the The Erythromelalgia Association that actually sponsors their own research on erythromelalgia, so it can be done, and is done by this grassroots non profit organization. Do you know of any other grassroots non profits that are an example like this? Why not tell us about it by replying to this thread? Watch the video on this page about the EA organization. 

    Rosacea Independent Sponsored Research 
    Is a grassroots motive something to consider, or are you content with the current status quo rosacea research being done by a 'top down' decision making process used by the 'other non profits for rosacea' whose board members are not suffering from rosacea? Do you think the paltry rosacea research being sponsored by these 'top down' 'other' non profit organizations for rosacea is the best that can be done? Are you aware of what most rosacea research being conducted is sponsored by? Most rosacea research is being sponsored by the skin industry. [4] Do you think a grassroots non profit organization for rosacea could sponsor their own independent rosacea research? As Miracle Max points out, 'It would take a miracle." Watch the video on this topic on this page

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. 

    End Notes

    [1] Grassroots, Wikipedia

    [2] Links, Other Non Profit Organizations 

    [3] Volunteering

    What Community Support Means to You?

    [4] Rosacea Research in Perspective of Idiopathic Diseases 

    Rosacea Research in Perspective of Funding

  19. If you look at the photos of the "erythematous scaly plaques on the eyelids, cheeks, nose, nasolabial folds, and chin" of this 16 year old male suffering from Netherton syndrome who was successfully treated with secukinumab, it looks a bit like SD. It would be interesting to see if this treatment works on SD or rosacea?  Who would sponsor such a research clinical paper? Could 10K members of the RRDi be united enough to each donate one dollar so we could sponsor such a research investigation? Wouldn't you like to know if secukinumab would treat your skin issue? Ask you physician. Post in this thread your results. Why not be a RRDi volunteer and post your comment about this? Find the green reply button. It is not that difficult to register an account with just your email address. Of course, volunteering is not for sissies

    "At his most recent follow-up after almost 3 years of treatment with secukinumab, he had complete clearance of his facial erythema and only 1 mild flare of the polycyclic plaques on his trunk and extremities several months before."
    JAAD Case Rep. 2020 Jun; 6(6): 577–578.
    Successful use of secukinumab in Netherton syndrome
    Sarah K. Blanchard, MD and Neil S. Prose, MD

  20. "Discoid lupus erythematosus (DLE) is a chronic inflammatory erythematous skin disease that can be triggered by several factors. Rosacea is another skin disease that causes facial redness and tenderness. Demodex mites have been reported in rosacea and DLE patients commonly in the literature. These two diseases can be seen concomitant, mimic each other clinically and share common possible etiologic factors."

    Dermatol Ther. 2020 Apr 10;:e13394
    Demodex positive discoid lupus erythematosus: Is it a separate entity or an overlap syndrome?
    Dursun R, Durmaz K, Oltulu P, Ataseven A

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