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Guide

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  1. CromolynSodium.jpeg

    "Recently, mast cells (MCs) have emerged as key players in the pathogenesis of rosacea through the release of pro-inflammatory cytokines, chemokines, proteases, and antimicrobial peptides leading to cutaneous vasodilation, angiogenesis, and tissue fibrosis. Several existing and emerging topical, oral, and injectable therapeutics have been associated with improvement of rosacea symptoms based on their ability to stabilize and downregulate activated MCs." [1]

    Cromolyn Sodium may be "a potential therapeutic in the treatment of erythematotelangiectatic rosacea." [1]

    "In recent years, a number of topical, oral, and injectable therapeutics have been shown to alleviate the symptoms of rosacea through stabilization and inhibition of MC signaling." [1]

    Other MC stabilizers include Brimonidine tartrate 0.33%, Artemether emulsion 1%, HydroxychloroquineArtemisinin, and Botulinum toxin

    [1] Mast Cell Stabilizers in the Treatment of Rosacea: A Review of Existing and Emerging Therapies

  2. Pruritis, severe itching of the skin, is occasionally described as a symptom in rosacea patients and is usually described in folliculitis or other skin conditions. One paper in discussing Nocturnal Pruritus (NP) had this to say about it: 

    "Skin conditions such as atopic dermatitis, psoriasis, urticaria, and prurigo nodularis are well-described causes of NP." [1]

    Find the reply button on your device and comment on your thoughts on this subject. 

    End Notes

    [1] Nocturnal pruritus and sleep disturbance associated with dermatologic disorders in adult patients

  3. "Chronic visible skin diseases are a highly prevalent health problem. In Germany, around 10 million people are affected, most commonly by psoriasis, acne, rosacea and atopic dermatitis. In addition to medical consequences, patients have a substantial psychosocial burden. A study among dermatological outpatients in 13 European countries reported the presence of depression in 10.1%, anxiety in 17.2% and suicidal ideation in 12.7% of all patients. Patients with skin conditions also frequently report an impaired health‐related quality of life4 and feelings of stigmatisation."

    Effectiveness of a structured short intervention against stigmatisation in chronic visible skin diseases: Results of a controlled trial in future educators

  4. Tetracycline has been used to treat rosacea for a long time, particularly doxycycline. One of side effects is photosensitivity. The article below distinguishes between a phototoxic or a photo allergic reaction. 

    "Tetracyclines (TCs) are a group of broad‐spectrum antibiotics discovered in the 1940s and exhibited activity against a range of microorganisms including gram‐positive and gram‐negative bacteria (e.g., chlamydiae, mycoplasmas, rickettsiae), and protozoa; they are largely prescribed in dermatology and infectious diseases, both for the anti‐bacterial and anti‐inflammatory actions. TCs are considered generally well tolerated, although some adverse events may occur during treatment, one of them is photosensitivity. From the photobiological point of view, the photosensitivity reactions are a consequence of the absorption of light energy by a photosensitizing substance (e.g., a drug) and of the subsequent photochemical reactions determining changes in living tissues. They are usually divided in phototoxic or photoallergic, depending on the different mechanism involved. TCs have been reported as phototoxic, but not photoallergic drugs."

    Tetracyclines and photosensitive skin reactions: A narrative review

  5. While the following conclusion is a valid point of this article on the skin microbiome, it totally focuses on bacteria. 

    "Further research on the skin microbiome in inflammatory skin diseases is needed, particularly concerning the impact of antibiotics on the microbiome and the beneficial effects of topical probiotics in improving skin health and the individualized treatment of skin diseases."

    Features of the Skin Microbiota in Common Inflammatory Skin Diseases

    A similar approach focusing again on bacteria states the following: 

    "This is a compelling area for future research, and to achieve this objective microbiota research should focus on a much more integrative model that takes into account the target microbiota but also other supposedly unrelated microbiotas."

    Human Microbiota Network: Unveiling Potential Crosstalk between the Different Microbiota Ecosystems and Their Role in Health and Disease

  6. 'In conclusion, dermatologic patients had generally positive attitudes towards COVID-19 vaccination, and their preferences were affected by age.'

    Attitudes of Dermatologic Patients Towards COVID-19 Vaccines: a Questionnaire-Based Survey

    "COVID-19 knows no borders. During an international medical crisis, the global perspectives and insights from those in our field are invaluable. For instance, the regional differences observed in regard dermatologic manifestations of COVID-19, such as pernio-like lesions, could provide insight into various pathogenic mechanisms of COVID-19. Furthermore, it seems that a hybrid of teledermatology and in-person visits may be most ideal to reduce contact and potential transmission while also ensuring timely diagnosis and treatment of urgent skin disorders. Although responses to the pandemic varied depending on government leadership, culture, and resources, the lessons learned and experiences of dermatologists during this time can serve as a guidepost to help our field address new challenges as cases continue to escalate in parts of the world."

    How Coronavirus Disease 2019 Changed Dermatology Practice in 1 Year Around the WorldPerspectives from 11 Countries

     

  7. Burning and Stinging is included in diagnostic symptoms of rosacea. Usually signs in rosacea are those that can be observed, while symptoms are those described by the patient. Burning and stinging are invisible symptoms. [1] This post is devoted to clarifying these two symptoms since they may be important to you to learn more. 

    First, burning and stinging may possibly be included in differentiating sensitive skin from rosacea. Some authorities believe sensitive skin should be differentiated, while others feel that sensitive skin is included in diagnosing rosacea. Treatment for sensitive skin is therefore the logical choice. [2] 

    "Available therapies for rosacea have the potential to treat beyond signs, and improve burning and stinging symptoms in parallel. Further investigation is needed to better understand these benefits and to optimize the management of rosacea." [3]

    If you have something to add to this post, find the reply to topic button on your device. 

    End Notes 

    [1] Whether burning and stinging are included as part of non-visible disabilities remains to be seen. If enough rosaceans got together in a non profit organization for rosacea and demanded such a determination depends on a rosacea patient advocacy organization. What are your thoughts?

    "Hidden Disabilities or Non-visible Disabilities (NVD), can hinder a person's efforts to go to school, work, socialize, and more." Invisible Disability, Wikipedia

    [2] Sensitive Skin vs Rosacea

    [3] PubMed RSS Feed - -The Importance of Assessing Burning and Stinging when Managing Rosacea: A Review
     

  8. 23 hours ago, Guest Jennifer said:

    I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

    If you have been diagnosed with Phenotype 5, it usually responds to treatment quite well. We have a list of treatment options to consider listed in this post which requires you join the RRDi as an active member to view. Have you been diagnosed with Phenotype 5? What 2 prescription treatments have you used?

  9. 2 hours ago, Miss said:

    Is green tea a trigger?  I drink a lot every day.  I don't seem to notice a difference after I drink it.  Could it just be affecting my baseline redness?

    Green tea hasn't been on an rosacea trigger list. What is on most rosacea trigger lists is HOT BEVERAGES may cause a flush, whether it is green tea, black tea, white tea, coffee, hot water, etc. 

    FOR MORE INFORMATION

  10. On 10/1/2021 at 8:01 PM, Miss said:

    I'm trying to activate my account.  Any help?

    If you are a RRDi inactive member, you need to login to your account. Then simply accept the new terms of registration and subscribe for a minimum of one month (discount for three, six, twelve, or hundred twenty month subscriptions). That reactivates your account. Once you are reactivated, under your display name it shows 'Active Member Subscribed.' This gives you 30 days of access to our website where guests are restricted (or longer if you chose a longer subscription plan). 

    If you remember the email address you used to register your account but forgot the password, use the forgot password tool to reactivate your account: 

    https://irosacea.org/lostpassword/

    If you don't remember your login credentials, our volunteers can assist. Use the contact form and give us what you remember you used to register your account, i.e., your display name?  We can then reset your password for you if we can figure out what EMAIL you used to register your account. 

     

  11. Just saw a new page on the NRS website designated, 'key staff' and you can see a screen shot below: 

    Screen Shot 2021-09-02 at 7.41.26 AM.png

    If you will note in the above paragraph, Mr Huff is stated as 'president of the Glendale Communications Group, which provides infrastructure and personnel for for the NRS program services at no cost to its members.' If this is correct, why do the past 22 years of public Form 990s (1998 thru 2019) show that over $10 million of the donations to the NRS have been spent on private contractors that are owned by Mr. Huff, including Glendale Communications Group? For example, in 2019 the NRS spent $285,871 on 'private contractors' including Glendale Communications Group which happens to be 94% of the donations given to the NRS in 2019. If this is 'no cost to its members' then why report this expense on Form 990 for 2019?  In the previous year, 2018, the NRS spent $432,408 on private contractors, one of which is Glendale Communications Group, which happens to be 93% of the total donations given to the NRS in 2018.

    For a complete list of these Form 990s click here

    For a breakdown of how the NRS spends its donations click here

  12. The controversy of using ivermectin for Covid 19 continues. For example, watch this TV station news report on this.

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

    NEWS • 02 August 2021 • Nature

    Flawed ivermectin preprint highlights challenges of COVID drug studies

    The study’s withdrawal from a preprint platform deals a blow to the anti-parasite drug’s chances as a COVID treatment, researchers say.

    ========================

    Rand Paul has a *very* wacky theory about ivermectin

    Analysis by Chris Cillizza, CNN Editor-at-large, Updated 8:46 PM ET, Tue August 31, 2021

  13. 5 hours ago, ak5790 said:

    Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

    This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

    Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

    Thanks for your insight into all this. Very few, as you have pointed out, are motivated to express any thought on this subject. The RRDi has social media accounts. Would you like to volunteer to moderate and manage one or more of them?  

  14. The literature available so far provides low-quality evidence of a modest effect of IVM in improving clinical outcomes in COVID-19, with some data on prophylactic use.

    Pertinently we feel that the purists would wait for the ideal trial that would have to factor in the initial period of infection, severity, clinical parameters, and possibly a higher dose, but the emergent desire for administering a cheap drug supplants the rigors of such parameters. The drug has already found its way in many regional, state, and International protocols of clinical care though more evidence would be welcome to establish its role and as evidenced by the data in Table 3, a growing evidence of its use is being published and we feel it is one of the few drugs that has transcended in-vitro data to clinical applicability.

    IVM is a drug that is safe, cheap, and widely available with multimodal action. The wide applicability with mass prophylaxis campaigns in various tropical disorders certifies its safety. The dermatological indications extend beyond scabies and pediculosis. The repurposing of this drug for COVID-19 is based on firm in-vitro data and therapeutic data suggests that it is a useful drug in the early virus replicative phase of the disease. It can be given at higher doses based on the available data which may achieve the ideal serum levels for an antiviral action. While it has established a firm place in the management of several nematodal and ectoparasitic infections, the anti-inflammatory, anti-cancer, and anti-viral/bacterial role of IVM make it a versatile drug, the full potential of it will evolve over the years.

    Current Use of Ivermectin in Dermatology, Tropical Medicine, and COVID-19: An Update on Pharmacology, Uses, Proven and Varied Proposed Mechanistic Action

  15. IVM has broad-spectrum in-vitro antiviral activity against many RNA and DNA viruses, including human immunodeficiency virus-1 (HIV-1), dengue virus (DENV), influenza, Venezuelan equine encephalitis virus (VEEV), a flavivirus, pseudorabies virus, and Zika virus.

    In addition to controlling filariasis, the mass drug administration (MDA) of IVM has also had effects on limiting the spread of malaria.

    Current Use of Ivermectin in Dermatology, Tropical Medicine, and COVID-19: An Update on Pharmacology, Uses, Proven and Varied Proposed Mechanistic Action

  16. Topical IVM has shown to downregulate the proinflammatory genes IL-8, cathelicidin LL-37, HBD 3, TLR-4, and TNF-α in papulopustular rosacea along with its antiparasitic action against Demodex.

    IVM 1% cream is now approved by US FDA for the treatment of inflammatory rosacea. IVM not only targets Demodex folliculorum but also reduces the inflammation associated with the condition. Results of a two-week controlled, investigator-blinded trials revealed that IVM 1% cream is superior to placebo in reducing inflammatory lesions in papulopustular rosacea, with near-complete treatment response, and improving patient satisfaction and quality of life.[] In addition, IVM 1% cream was found to be better than metronidazole 0.75% cream for decreasing the inflammatory lesion count, reaching “clear” or “almost clear” response and patient satisfaction.[] IVM is also well-tolerated and beneficial for the treatment of perioral dermatitis.

    Current Use of Ivermectin in Dermatology, Tropical Medicine, and COVID-19: An Update on Pharmacology, Uses, Proven and Varied Proposed Mechanistic Action

  17. Every dermatological disease assessed had a significant increase in TME when compared to the prior year. This increase was most significant for acne vulgaris (808%), psoriasis (792%), malignant skin neoplasms (716%), atopic dermatitis (609%), rosacea (566%) and contact dermatitis (529%). 

    Published online 2021 Aug 19. doi: 10.1016/j.jid.2021.07.109

    LB767 A multicenter analysis of patients using telemedicine for dermatological conditions during the COVID-19 pandemic

  18. 5 hours ago, Mary Byrnes said:

    The generic Soolanta is irritating to my skin.  Does anyone else have a problem with it?

    I haven't tried it. Some have complained about the 'Cetephil' base that Soolantra uses complaining it irritated their skin. Some love Cetaphil for their skin, so everyone is different. We were hoping that this new Teva Generic would be different and would help out. Sorry it didn't work out for you. Thanks for your report.

    You are now in the running for a free jar of the ZZ cream which some have reported works better than Soolantra.

    For a comparison spreadsheet of the base with Soolantra click here

  19. "Minocycline hydrochloride combined with photodynamic therapy can effectively improve the skin barrier function of patients, relieve clinical symptoms, and enhance the overall efficacy and quality of life. It is also safe and patients are highly satisfied with the cosmetic effect."

    Effect of minocycline hydrochloride combined with photodynamic therapy on skin barrier function of patients with acne
    Am J Transl Res. 2021; 13(7): 8427–8432.

  20. ABCB1.png

    "P-glycoprotein 1 (permeability glycoprotein, abbreviated as P-gp or Pgp) also known as multidrug resistance protein 1 (MDR1) or ATP-binding cassette sub-family B member 1 (ABCB1) or cluster of differentiation 243 (CD243) is an important protein of the cell membrane that pumps many foreign substances out of cells. " [1]

    "Adenosine triphosphate–binding cassette subfamily B member 1 (ABCB1), also known as permeability glycoprotein, multidrug-resistant protein 1, or cluster of differentiation 243 (CD243), is a crucial protein for purging foreign substances from cells." [2]

    "Growing evidence suggests that ABCB1 manipulation may be a strategy to optimize treatment effects in dermatology. First, variations in ABCB1 are associated with the risk of adverse effects of ivermectin, azathioprine, and various antihistamines. Second, variations in ABCB1 are associated with treatment responsiveness to many crucial dermatologic agents, including colchicine, biologic agents, cyclosporine, antihistamine, methotrexate, and topical steroids. Third, ABCB1 is crucial for transepidermal delivery of topical agents, notably topical corticosteroids. ABCB1 expression increases in erosive lichen planus, which may contribute to therapeutic refractoriness to topical corticosteroids. Finally, food may also play a considerable role in ABCB1 expression, and food may affect the efficacy and safety of some medications, such as cyclosporine. However, we must interpret the data carefully because many of the studies were performed in cell lines instead of primary culture and in vivo studies. The regulatory mechanism may differ among these processes, and the data do not reflect the processes in vivo. Because the role of ABCB1 in malignancy has been studied extensively, further investigation is warranted to elucidate the roles of ABCB1 in nonneoplastic dermatologic diseases." [2]

    End Notes

    [1] P-glycoprotein, Wikipedia - Image courtesty of Wikimedia Commons

    [2] ABCB1 in dermatology: roles in skin diseases and their treatment
    J Mol Med (Berl). 2021 Aug 9 : 1–12.

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