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  1. Admin

    Afrin for Redness

    Emily47 at RF (post no 54) reports, "I mixed Afrin and CeraVe (suggested my dermatologist) and it worked! Immediately less redness!" According to Vitacost.com, oxymetazoline hydrochloride, 0.05 percent, the active ingredient in Afrin nasal spray, works by constricting, or shrinking, the blood vessels in the nose, and thereby reducing nasal blood flow. - livestrong.com
  2. Fluorouracil (5-FU), aka, Adrucil, Carac, Efudex, Efudix, others, used to treat cancer has the side effect or risk of inflammation of the skin. There are reports that this treatment exacerbates rosacea. Caveat emptor. Thread at RF about this
  3. Admin

    Fake Rosacea News?

    How do you know if you are reading fake rosacea news? Or what if you read about a certain rosacea treatment whether topical or oral? Can you trust the reviews from the web site? Who would you trust to substantiate a news item about rosacea? Maybe your physician? A social media site? How about a non profit organization for rosacea patient advocacy? How do you produce a watchdog (a rosacea Snopes) who can substantiate a rosacea news item or weed out a fake reviewer and expose the bum is lying about a rosacea treatment? The RRDi is one of best sources of rosacea data to compare rosacea news items with fake or with what's really a trusted source on any news item about rosacea and is the only non profit organization for rosacea patient advocacy. The other non profit organizations for rosacea are not founded by rosacea sufferers and have a different rosacea agenda. Just follow the money how any non profit organization for rosacea spend the donations and you will see what the agenda is all about. Is the spending 60% of the donations on private contractors owned by the director of the non profit the main agenda? Is most of the spending of more than 75% of the donations on 'annual and mid-year meetings' for the professional members of the non profit the main agenda? Follow the money. Read an interesting tech article related to fake news at wired, SHADOW POLITICS: MEET THE DIGITAL SLEUTH EXPOSING FAKE NEWS by BY ISSIE LAPOWSKY, about how media scholar Jonathan Albright discovered through endless hours of research how the the world's biggest internet platforms were riddled with fake news. This inspired me to comment on all the data I have collected (basically just about everything at this web site has been collected by me, there may be a small percentage of posts adding some new information from RRDi members, and it would take me a number of hours to give you the math on this, which really isn't important at all at this point, you will simply have to trust me on this until proven otherwise) on rosacea trying to put them into logical categories in the forum and the affiliate store. I have tried unsuccessfully so far to attract some kindred spirits to help me in this endeavor but alas, what I have found is most rosacea sufferers are mostly centered on their own rosacea issues, whether it is rosacea or some other rosacea mimic, and simply will not volunteer to help make the RRDi's mission come true. It is very sad. 14 years ago when the RRDi was founded, there were quite a number of impassioned volunteers who assisted me in this endeavor but they are now mostly faded away. Where have all the volunteer rosaceans volunteer gone? Where is a passionate rosacea volunteer with a spirit like Jonathan Albright to be found? Alas, such volunteer rosaceans are slim to none. The reason I am writing this post is that after reading how Jonathan Albright's passionate hours and hours of researching to discover how fake news was being spread through all the internet platforms, making a detailed map, which without a doubt took more hours to make, it has inspired me to explain that I have spent endless hours putting the RRDi together and basically this web site and all the rosacea data collected is the Crown Jewels. The RRDi MAC is definitely a close second (you try to bring together some noted rosacea professionals into a group). Third, the Internal Revenue Service approval as a 501 c 3 approved non profit organization (along with the non profit approval from the State of Hawaii) is the last crowning achievement. I am now sixty eight years old. I have my rosacea controlled and have updated my regimen here. So I am seeing the hand writing on the wall, since who is going to take over the RRDi if I croak? Basically, if someone doesn't have the kind of passion I have had for this mission and steps up the plate, the RRDi is going to fade away and all you have left is the NRS and the AARS. Is that what you really want to happen? So think about what I am telling you and please comment in this thread what you think should be done about this? Just think if there is no RRDi, no real legal non profit organization for rosacea patient advocacy, and all you have left are the two non profit organizations mentioned above who are set up by NON ROSACEANS and whose donations are from primarily pharmaceutical corporations who have a vested interest in promoting skin products and who spend little (compared to how much money is donated) on rosacea research? So if the RRDi fades out of existence and you do nothing about this, is that the way you want it to go? What rosacea news is the NRS and AARS spreading? Both non profits clearly state on their websites that pharmaceutical companies are sponsors. What is the agenda when posting information about rosacea? What is the agenda of spending the donations mainly on what? Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ” 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. publikation_kligman.pdf Why not join the RRDi, volunteer, help find the cure and expose rosacea fake news?
  4. If others don't volunteer and work together for rosacea patient advocacy then rosaceans deserve what they get with the NRS and the AARS which are the only non profits doing any rosacea research. And what kind of research do these organizations do? Who donated primarily to the these organizations? Pharmaceutical companies. And what kind of research do they engage in? You guessed it. Here is a quote from my book I wrote in 2007 on page 82: "Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ” 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. publikation_kligman.pdf
  5. In this study, significant cardiovascular disease risk factors such as a family history of premature cardiovascular disease, obesity, prediabetes and high C-reactive protein levels were found to be higher in rosacea patients than controls. Although the underlying mechanism is not clear, it is thought that chronic inflammation and disregulation of innate immune system increase risk of cardiovascular disease in rosacea patients. The American Journal of Cardiology Volume 121, Issue 8, Supplement, 15 April 2018, Page e106OP-264 - Investigation of Cardiovascular Risk Factors in Rosacea Patients Muhammed Karadeniz
  6. In order to really understand and put rosacea research in perspective it is important to understand where rosacea is in terms of total disease on this planet. Google Answers says, "According to the World Health Organization, there are still no effective treatments available for around three quarters of the 30,000 diseases known today worldwide." [1] “For two thirds of all known sicknesses—about 20,000—there is so far no way of treating the cause.” [2] So rosacea is somewhere between three quarters and two thirds of what is termed idiopathic diseases. [3] Since the cause of rosacea isn't known, and the number of theories on the cause of rosacea has grown exponentially over the years, rosacea is an idiopathic disease. According to Michael Detmar, M.D., in 2003, only one paper was published for every 144,000 rosacea patients in the United States, compared to a 1-to-11 ratio for melanoma and 1 to 4,900 for psoriasis. [4] This indicates how rosacea research is compared to other idiopathic skin diseases that have a more devastating impact on sufferers. If you had to choose one of these three diseases as a consequence which one would you choose? Comparing rosacea to melanoma or psoriasis does put rosacea into perspective when it comes to suffering. So any papers published about rosacea is indeed something to be grateful for. With the increase of spending on pharmaceutical treatments for rosacea comes more research spending. The NRS and AARS, being sponsored by pharmaceutical companies, have engaged in most of the rosacea research. Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ” 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. publikation_kligman.pdf If rosaceans want to sponsor their own novel rosacea research, they would need to be united, have a volunteer spirit, and use the RRDi to sponsor their own research. Put that into perspective. End Notes [1] how many diseases are there? [2] The German pharmaceutical publication Statistics ’97 [3] Idiopathic Disease, Wikipedia [4] Rosacea: turning all stones for source of pathology Rebecca Bryant, Dermatology Times, Jun 1, 2004
  7. image courtesy of Espiritu Salon and Spa There are now spa treatments using cryotherapy. Will this work for rosacea? Cryotherapy has been used to treat phenotype 5. Will it improve any other phenotype? Time will tell since without a doubt we will be receiving reports whether any other phenotype is improved with cryotherapy. There is a history of using cryotherapy for rosacea going back to an article published in 1948: "Despite the fact that cold may be an aetiological factor in rosacea (Haxthausen, 1930, Lortat- Jacob and Solente, 1930, Sequeira, Ingram, and Brain, 1947), cryotherapy is the most valuable ancillary method of treatment......In U.S.A., Bluefarb (I945) and Hume (I948) recommended that powdered sulphur should be mixed with the slush. Solente (I925) pointed out that its value in rosacea was due to the ultimate diminution, in calibre of the local blood-vessels in the dermis. This is the accepted mechanism of its action but Lortat-Jacob and Solente (I930) claim that there is an additional reflex action via the sympathetic. Some workers, such as Vieira (1947) use the snow only to destroy the small, easily visible, dilated, superficial vessels. This is the only purpose for which a snow stick may be better than slush.... ...Shortly after treatment the skin becomes bright red and remains unsightly for a few hours. This is accompanied by a mild feeling of burning (the actual application of the slush is more painful), which may be relieved by fuller's earth, talcum, or face powder. By next day all sign of the immediate efects of treatment should have gone but there may be some blistering especially after the first treatment when the sensitivity of the skin - is not known. There is less likelihood of blistering after subsequent applications. The total length of treatment is variable and must be judged separately for each patient; four to eight sessions are usual. The treatment nearly always leads gradually to much improvement. Each week the skin can be seen to be paler with fewer obvious dilated vessels and less thickening. Complete cure is less common. It is essential to remember that cryotherapy is only a part of the treatment." CRYOTHERAPY FOR ROSACEA By E. LIPMAN COHEN, M.A., M.B., B.CHIR.(Cantab.) London Postgraduate Medical Journal, December 1948 p 656-659 CRYOTHERAPY_FOR_ROSACEA.pdf image courtesy of Cryo.com.au The Cryo.com.au website uses LED with cryotherapy and states, "CRYO LED uses two wavelengths of light that are Food & Drug Administration (FDA) approved to promote collagen and elastin production, helping to reduce wrinkles and tighten skin. This process feeds cells with wavelengths of light that they convert to the fuel source ATP that promotes cell reproduction and renewal. An increase in local blood circulation helps to flush toxins from the dermal layers of the skin. CRYOTHERAPY AND CRYO LED not only improves your appearance but the experience will make you feel fantastic." So if you try cryotherapy for your rosacea, please post your results in this thread. There are a number of reviews you can read concerning cryotherapy at cryo.com.au.
  8. Take the $500 Microablation and Triphasic Combination Facial at Cornelia Day Spa in New York City. Aestheticians wave an electromagnetic wand over the skin to stimulate collagen, minimize lines, reduce acne and ease chronic irritation (like eczema or rosacea). They then use a triphasic resonator that relies on heat, vibration and therapeutic electrical force to contour and sculpt the face. World's Most Expensive Spa Treatments By Lauren Sherman, Forbes
  9. Admin

    Form 990 for the AARS

    AARS 2017 Form 990 Review 2017-Form-990.pdf Total Contributions from public support (99.33%) in the amount of $309,032. Total Expenses were $440,381. At the end of the 2017 the AARS has 'unrestricted net assets' totaling $374,176. The AARS spent most of its expenses on 'ANNUAL AND MID-YEAR MEETINGS' for its members in the amount of $261,451. The second highest expense was for 'MENTORSHIP AND CLINICAL RESEARCH GRANTS' in the amount of $109,840. Of these grants three were for ACNE and one was for "bioinformatics analysis of acne and rosacea transcriptomes" by Rivka C. Stone, MD, PhD. One quarter of the research grant money ($26,460) was spent on 'acne and rosacea' so half of that would be $13,730*. So technically of the total donations received that was spent on rosacea research was 4.4%. That means for every dollar donated to the AARS 4 cents was spent on rosacea research, 31 cents spent on acne, 84 cents spent on 'annual and mid-year meetings, and the AARS spent more money than was received drawing on their net assets to accomplish this. The AARS still has a lot of money left in their net assets at the end of the year to draw on for 2018 expenses. You can view the published papers of the grant recipients on its web site to confirm that three grants were for acne and only one grant mentions rosacea. The board of directors received no money and there are no private contractor expenses. So while the AARS did spend more money on acne research (and little for rosacea) than last year which more than doubled 2016's research grants, the same pattern of spending the vast majority on meetings for the AARS professional members seems to be what the priority is when spending the donations of this non profit. *Of the four research grants, three were for acne research and only one was for 'acne and rosacea.' So half of $26,460 is $13,730 which is technically what was spent on 'rosacea' research. It only figures that acne would get primary attention since the name of the organization is 'Acne and Rosacea' and what comes first? Obviously by the way the AARS spends its money on research grants rosacea is considered second. Of course, we have no way of knowing how the total amount ($109,840) was distributed to the recipients of the grant money since the AARS isn't saying how much each one received, so all we can do is divide by four ($26,460).
  10. Admin

    ZOSSO, aka ZZ Cream

    I began using the Lutein/Zeazanthin treatment for about three months and recommend you try it. I really do think it helps rosacea. I take 40 mg/Lutein, this one.
  11. "They hope their findings will eventually lead to the development of a potent, broad-spectrum anti-inflammatory therapeutic." Natural Lipid Acts as Potent Anti-Inflammatory NIH Scientists See Therapeutic Potential Against Bacteria, Viruses July 6, 2018 National Institutes of Health
  12. This long-term study demonstrated sustained safety, tolerability, and efficacy of oxymetazoline for moderate-to-severe persistent erythema of rosacea. J Am Acad Dermatol. 2018 Jun;78(6):1156-1163. doi: 10.1016/j.jaad.2018.01.027. Epub 2018 Jan 31. Efficacy and safety of oxymetazoline cream 1.0% for treatment of persistent facial erythema associated with rosacea: Findings from the 52-week open label REVEAL trial. Draelos ZD, Gold MH, Weiss RA, Baumann L, Grekin SK, Robinson DM, Kempers SE, Alvandi N, Weng E, Berk DR, Ahluwalia G. David Pascoe has some comments about the above trial results at this post.
  13. "RHOFADE should be used with caution in patients with severe or unstable or uncontrolled cardiovascular disease, orthostatic hypotension, and/or uncontrolled hypertension/hypotension." [1] "As the 5-HT2B receptor is potentially involved in drug-induced valvulopathy, the benefit/risk ratio should be carefully considered, especially in patients with cardiovascular disease or other comorbidities." [2] "Alpha-adrenergic agonists as a class may impact blood pressure. Advise patients with cardiovascular disease, orthostatic hypotension, and/or uncontrolled hypertension or hypotension to seek medical care if their condition worsens. (5.1)  Usewithcautioninpatientswithcerebralorcoronary insufficiency, Raynaud’s phenomenon, thromboangiitis obliterans, scleroderma, or Sjögren’s syndrome and advise patients to seek medical care if signs and symptoms of potentiation of vascular insufficiency develop. (5.2)  Advisepatientstoseekimmediatemedicalcareifsignsand symptoms of acute narrow-angle glaucoma develop. (5.3)" [3] End Notes [1] Once-Daily Treatment Reduces Persistent Facial Erythema (Redness) Associated With Rosacea Through 12 Hours, Allergan, 01.19.2017 | Investors [2] Drugs in R&D, March 2018, Volume 18, Issue 1, pp 87–90 In Vitro Safety Pharmacology Profiling of Topical α-Adrenergic Agonist Treatments for Erythema of Rosacea David Piwnica, Atul Pathak, Gregor Schäfer. James R. Docherty [3] Allergan Prescribing Information for Rhofade
  14. Posted this to in inquiry by mickwayne on July 2018 at RF posts no 5 and 7 which I thought would be interesting for any RRDi members who may not be reading posts at RF and might read it here: Originally Posted by mickwayne ...goes to "irosaceaa.org/register" URL instead of "irosacea.org" URL. I also have a question, Brady. Do we ever do any cold calling or events to raise money for rosacea, or specifically for the RRDi or the NRS? Maybe we could even post DONATE buttons on our articles about rosacea so that people could donate. I would love to help with this as it would be a great way to essentially volunteer for what might help be close to a cure one day...or at least more improvement 😛 MY REPLY: There are rosaceans who donate to the NRS, such as the owner of this forum, David Pascoe, who was instrumental in donating $16K to the NRS. Without a doubt rosaceans prefer the NRS. The NRS is founded and run by non rosacea sufferers. What does the NRS spend most of its donations on? I have been following for a long time. Since 1998 through 2016 the NRS has received in donations $13,898,646. The majority (60%) of the donations are spent on two private contractors (two corporations) that are owned by the founder and director of the NRS, Sam Huff. About 10% of the donations are spent on rosacea research which amounts to $1,403,031 (which is significant since the NRS spends more on rosacea research than any other organization). However, to put this in terms you can understand, for every dollar donated to the NRS 60 cents is spent on two private corporations owned by Sam Huff. Ten cents is spent on rosacea research. The remaining 30 cents is spent on everything else. Here is the data; you can do the math yourself if you prefer. However, the RRDi was formed completely separately from the NRS and is founded and run by rosacea sufferers. The RRDi has tried to get corporate sponsors like the NRS has done but all the pharmaceutical companies, i.e., Galderma, Allergan, Bayer, Cutanea, Beiersdorf, colorscience, prefer to donate to the NRS. Rosaceans rarely donate to the RRDi. If you want to change this volunteer. Volunteering is not something most rosaceans want to do. They prefer how the NRS is spending the money. I have tried to gather together rosaceans into a non profit organization but the members don't post, they don't volunteer, nor do they donate. If you want to help, join the RRDi and volunteer. Sure could use the help. You can donate by clicking here. By the way, it is gracious on David Pascoe's part to let me post these words in his forum. Mucho Mahalo to David Pascoe. RF happens to be the most active rosacea forum. I have posted more posts in RF than in the RRDi because very few if any RRDi members post in the RRDi member forum. Weird, isn't it?
  15. In inquiry on the status of Perrigo's generic ivermectin cream provided a response from Bradley Joseph, VP, Global Investor Relations and Corporate Communications, Perrigo Company, who wrote, "No change in the status of this product. We will announce via press release the launch of this product. Thanks."