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  • Posts

    • So going to the gym or exercising to increase muscle mass may improve your rosacea. Just about any physician will tell you that exercise and eating healthy will improve not only health but also your rosacea. 
    • Dr. Chris Steele talks about LDN. 
    • That has been my question for a number of years when I noticed no activity here at the RRDi, even though having over 1200 members, hardly anyone posts. I have thought during this time obviously rosaceans prefer social media over the forum style posting that has been around for twenty years, which doesn't have the user experience they are accustomed to using social media platforms. I have been browsing and posting a little at Facebook, Reddit, and Twitter and found that the level of education about rosacea is paltry and mostly these groups of rosaceans are into horse paste. They feel very comfortable showing horrible photos of their rosacea which I find really ironic since I heard so many complaints about joining the RRDi and filling out contact information (so we dropped the requirement and only require an email address). The lack of knowledge about rosacea in these social media groups and the spam posts allowed for all sorts of treatment for rosacea, not to mention the advertising, to me is a sad choice rosaceans have made instead of joining together in to a non profit organization for patient advocacy. At least I know where the rosaceans have gone. Very sad. 
    • Flugs at RF has started a thread indicating that low dose Naltrexone helps with phenotype 1 (of course Flugs calls it subtype 1). If you read the entire thread Flugs also takes propranolol (10 mg 3 times daily ), uses IPL (post no 29), however, in post no 49 Flugs writes, "I’ve also dropped all the meds I have tried in the past, none of which seemed to help much anyway... at least not enough for me to want to do something to my heart in order to help my face. So all I’m taking now is LDN and a tablesppon of apple cider vinegar every day." Flugs reports at post no 80, "On the down side though - I have to confess that i have had a few (pretty minor) flushes in the past two or three weeks. Almost always for no apparent reasons. It may still be post IPL recovery, last one was a month ago.. but IPL recoveries used to be waaaayyy worse, so if this is all I get I'm fine with that. I confess I have also been dabbling with (very mild) mandelic acid of late - I think I was overdoing it - Ive dialled back." So Flugs is still trying some other treatments along with LDN. In post 99 he mentions his 12th IPL treatment.  At post no 112 Flugs writes, "I am still prone to flushing a little when I get too warm - and also (oddly) when I am trying, and failing, not to fall asleep, such as late at night in front of the tv (that’s always made me flush.. does that happen with anyone else!?) when I say “flushing a little” I mean that my cheeks get red and feel warm, but I can take it down pretty much instantly by cooling them (fan, water spray etc) in some way. Even if I were to leave them be they would go down themselves within a few mins... compare that to the sometimes 12 hour long painful flushes I got when the rosacea arrived two years ago." Judworth who suffers from Neuropathic Rosacea (has lots of posts) reports in the same thread Flug started mentioned above about his experience taking LDN, "Since taking LDN I am cautiously happy to report that I haven't had any facial nerve pain, I still get the warm room flush, but my face is less reactive in general, even after a spell on the computer (which always gave me an element of activity even if it wasn't a full-blown flush)." At post no 117 Judworth writes, "LDN has been a god-send for me, not only calming the skin, stopping my facial nerve pain and halting the burning sensation in my mouth caused by lichen planus, I feel it is somehow re-booting my faulty immune system!" The low dose Naltrexone is usually starting out at 1 mg and gradually increasing to 4.5 mg. Flugs insists that taking more than this won't work (go through his thread which has many other users reporting success with what they call LDN).  You may want to show your doctor this pdf:  Low-dose Naltrexone (LDN) Fact Sheet 2014 LDN Research Trust LDNNow
    • image courtesy of IMDB Canadian Egyptian actress Christine Solomon has rosacea. She is reported as stating, "I purchased acne products off the shelf, and that turned out to be a big mistake! My cheeks became inflamed because of the ingredients in those products, and my condition worsened. That’s when I consulted a dermatologist for the first time, and he diagnosed me with rosacea at the age of 14 years old." Ms Solomon is the 2018 spokesperson for the Acne and Rosacea Society of Canada’s Rosacea Awareness Campaign. Canadian Egyptian Actress On Rosacea, Acne and Rosacea Society of Canada
    • Tom Busby, SD poster extraordinare at RF, mentioned in a post on this subject at RF, "an alternative source of ivermectin, on eBay" which is ivermectin powder. I asked Tom whether this would be a good idea since it seems a lot safer to use the horse paste than have to concoct a paste with grain alcohol and his comment is, "horse paste is fairly expensive for a really tiny amount of product.... I have to assume that someone who has some experience formulating hot emulsions (oil in water) could make a non-greasy cream with this ivermectin powder." I would prefer the horse paste for a trial run before purchasing a chemistry set to make this. Most rosaceans are not into a laboratory approach to treatment preferring a pill or a topical than experimenting with such treatments in a lab coat. But, of course, this is the internet, and guess what?  Horse paste for rosacea. Watch Mr. Wizard concoct a new rosacea treatment on YouTube. Maybe we will hear reports of this. If you haven't heard of the new TXA treatment, it also requires concocting a rosacea treatment yourself by purchasing powder from Amazon or your local chemical store. 
    • Evidence for a genetic component to rosacea has been hypothesized, with a retrospective study showing that rosacea patients have a greater than fourfold increased odds of having a family member with rosacea (Abram et al., 2010; Steinhoff et al., 2013), but the genes leading to this association are not known....A genome-wide association study was conducted in 22,952 individuals whose genomes showed >97% European ancestry. Because of the sample size needed for this study, cases and controls were identified by an online questionnaire in which participants responded to a survey item on whether a healthcare professional had ever diagnosed them with rosacea. Participants who answered “yes” were defined as “cases” (n=2,618), and those who answered “no” (n=20,334) were defined as “controls”.... Together, these data strongly suggest a role for antigen presentation by class II HLA in the etiology of rosacea. The data presented from this large discovery and replication group provide evidence for a genetic component of rosacea.  J Invest Dermatol. 2015 Jun; 135(6): 1548–1555.
      Assessment of the Genetic Basis of Rosacea by Genome-Wide Association Study
      Anne Lynn S Chang, Inbar Raber, Jin Xu, Rui Li, Robert Spitale, Julia Chen, Amy K Kiefer, Chao Tian, Nicholas K Eriksson, David A Hinds, and Joyce Y Tung
    • Rosacea is associated with a number of other diseases, referred to as ‘systemic comorbidities’, which one study reports, “Clinicians must be aware of the potential for systemic comorbidities in rosacea patients, which becomes more likely as disease duration and severity increase.” [1] The following is a growing list: Autoimmune conditions [2] Allergies (airborne, food, etc.) Anxiety Disorder [3] Alzheimer's Disease Cancer Chronic rhinosinusitis (CRS) [4] CKD Cardiovascular diseases [3] Depression/anxiety disorders [3] Dementia Diabetes [3] Dyslipidemia [3] Female hormone imbalance [5] [10] Gastroesophageal Reflux Disease (GERD) and other GI disorders [1] Glioma Hair loss Helicobacter pylori infection [3] Hepatobiliary system disorders [1] Hyperlipidemia [3] Hypertension [6] Inflammatory bowel disease (IBD) HLA-DRA Locus [7] Kidney Disease [8] Low-grade inflammation Mental Health Disorders [9] Metabolic diseases [1] MetS Migraine [31] Multiple sclerosis Obesity [25] Parkinson's disease Psychiatric diseases [3] Respiratory diseases [1] Rheumatoid Arthritis [3] SIBO Ulcerative Colitis [3] Urogenital diseases [10] The above list keeps growing. This complicates the theories on the cause of rosacea increasing the call for further research. However, in one study it was stated, "In this large study of patients with rosacea, atopic dermatitis, and psoriasis, we did not detect an increased 1-year risk of cardiovascular disease after adjusting for confounders." [18] Therefore, papers stating an association of rosacea with other diseases should all be taken with a grain of salt due to 'confounders' since another paper states, "Limitations included the accuracy of the published data, potential patient selection, and possible confounding factors. The true nature of the drawn correlations is uncertain, and causality cannot be established." [26] "In statistics, a confounder (also confounding variable, confounding factor or lurking variable) is a variable that influences both the dependent variable and independent variable causing a spurious association." Wikipedia End Notes [1] Int J Dermatol. 2018 Dec 21;:
      Systemic comorbidities associated with rosacea: a multicentric retrospective observational study. Aksoy B, Ekiz Ö, Unal E, Ozaydin Yavuz G, Gonul M, Kulcu Cakmak S, Polat M, Bilgic Ö, Baykal Selcuk L, Unal I, Karadag AS, Kilic A, Balta I, Kutlu Ö, Uzuncakmak TK, Gunduz K [2] Dermatol Clin. 2018 Apr;36(2):115-122. doi: 10.1016/j.det.2017.11.006. Epub 2017 Nov 29.
      Rosacea Comorbidities.
      Vera N1, Patel NU2, Seminario-Vidal L3. [3] J Am Acad Dermatol. 2018 Apr;78(4):786-792.e8. doi: 10.1016/j.jaad.2017.09.016. Epub 2017 Oct 26.
      Comorbidities in rosacea: A systematic review and update.
      Haber R1, El Gemayel M2. [4] There may be a relationship between rosacea and chronic rhinosinusitis (CRS) as the following quote concludes:  "Patients with rosacea and CRS manifested severe erythematotelangiectatic rosacea. There was enough evidence to suggest an association between rosacea and CRS. Clinical and radiological assessments of the paranasal sinuses are recommended." Med Princ Pract 2014;23:511-516 (DOI:10.1159/000364905) Rosacea and Chronic Rhinosinusitis: A Case-Controlled Study Al-Balbeesi A.O.  Department of Dermatology, King Khalid University Hospital, King Saud University, Riyadh, Saudi Arabia [5] "There is no research regarding hormones and their effect on rosacea," Dr. Bergfeld said. "However, it has been widely observed that rosacea is often aggravated at menopause and sometimes during mid-cycle." Women May Need Added Therapy, Rosacea Review, NRS [6] Cardiovascular Diseases and Rosacea [7] "The HLA-DRA locus is associated with rosacea as well as with other inflammation-associated disorders, such as inflammatory bowel diseases including ulcerative colitis, Crohn’s disease, and celiac disease....Moreover, Spoendlin et al. found that an increased risk of rosacea was observed particularly during the period of increased gastrointestinal tract inflammation. Thus, the overlap in the genetic relevance of HLA-DRA between rosacea and inflammatory bowel diseases might imply a potential link between these disorders...Patients with rosacea have a higher risk of cardiovascular comorbidities including hypertension, dyslipidemia, and coronary artery disease than that seen in controls. Rosacea severity was also found to be dependent on the presence of cardiovascular comorbidities....In addition, the association between cardiovascular diseases and rosacea might also be explained by enhanced expression of the cathelicidin, which has been observed both in the course of atherosclerosis and rosacea. The GWAS by Chang et al. [20] also revealed that patients with rosacea shared a genetic locus with type 1 diabetes mellitus; this association was further confirmed by a population-based study as well....Patients with rosacea have a significantly increased risk of neurologic disorders such as migraine, depression, complex regional pain syndrome, and glioma...Recently, an increased interest has been shown in the potential associations between neurodegenerative diseases and rosacea....For example,...Parkinson’s disease...dementia, especially Alzheimer disease..." Int J Mol Sci. 2016 Sep; 17(9): 1562. Published online 2016 Sep 15. doi:  10.3390/ijms17091562, PMCID: PMC5037831 Rosacea: Molecular Mechanisms and Management of a Chronic Cutaneous Inflammatory Condition Yu Ri Woo, Ji Hong Lim, Dae Ho Cho, and Hyun Jeong Park, Chris Jackson, Academic Editor [8] Study Finds Possible Link Between Kidney Disease and Rosacea, NRS [9] Clin Exp Dermatol. 2019 Jan 31;:
      The mental health burden in acne vulgaris and rosacea: an analysis of the US National Inpatient Sample. Singam V, Rastogi S, Patel KR, Lee HH, Silverberg JI [10] J Am Acad Dermatol. 2015 Aug 6;
      Rosacea is associated with chronic systemic diseases in a skin severity-dependent manner: Results of a case-control study.
      Rainer BM, Fischer AH, Luz Felipe da Silva D, Kang S, Chien AL      
    • The above report was done with 'questionnaires' and was not done with placebo controlled double blind studies. Again, the above study on diet and rosacea is simply anecdotal reports.  Another point to question is, does the tea consumed by the respondents to the 'questionnaire' have sugar? 
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