Guide
-
Posts
3,762 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Blogs
Gallery
Store
Downloads
Posts posted by Guide
-
-
5 hours ago, Mistica said:
Maybe we can dig up some more scientists?
Wouldn't it be nice to have volunteers who would dig up some more scientists? I dug up 45 medical professionals that have something to do with rosacea. So I should order the 'I dug up the RRDi MAC' Tee shirt, all 45 if them.
-
10 minutes ago, Mistica said:
Yes, total number of posts and large subject matter. People sharing their experiences and the discussions (at times) as to why a treatment is working or not working. Here in the RRDI there seems to be little of that. There are a number of studies in the archives, which is all well and good, but not actual discussions, which is a shame, given the fact there are a large number of doctors and a few scientists here. Perhaps they only have mild symptoms so they are not driven to ponder the biology of rosacea in their spare time? I am speculating of course.
I see. It took nearly seventeen years to gather 45 medical professionals who have anything to do with rosacea into one medical advisory committee (consultants) and it was like pulling teeth because volunteering isn't on most individuals' plates these days. In order to allow their names to be put on the list they agreed to volunteer for only ten minutes a month if they have the time to do so. The one perk the RRDi has with this is we have their contact information and we can personally ask questions and usually they respond with email and allow us to post their response for them since, like most rosaceans today, everyone posts at social media and they don't post here at the RRDi. All this effort of gathering together the MAC and the 1.3K members is going up in smoke if the donations are not forthcoming to keep this effort active. I can't do this alone and I am seventy years old. The handwriting is on the wall, 'The RRDi is dying.' We need some young blood to take over. We can register the RRDi as a non profit in any state if that is needed, if we have the funds to register if that would help whoever takes over. Otherwise, there are some hoops that have to be done to dissolve the RRDi.
-
1 hour ago, Mistica said:
There are no archives full of information as can be found in the rosaceagroup.org, rosacea-support.org or perhaps to a lesser degree, the RRDI. Perhaps one of the reasons that the RRDI does not retain the visitors it gets, is due to lack of extensive archives? I am only speculating. Mistica
Hi Mistica,
Thanks for your lovely post. Could you explain why you state 'perhaps to a lesser degree, the RRDi'? Is it because of the total number of posts at RF and RS are greater than the number in the RRDi?
-
micro RNAS courtesy of Wikimedia Commons
"Hundreds of publications have described the influence of ceRNA regulation in normal and disease cells, but ceRNA regulation and its effects continue to be debated in scientific circles." [1]
Competing endogenous RNA (ceRNA) may have implications in the genetic theory on the cause of rosacea.
"The exact molecular mechanisms of rosacea are unclear; however, this disorder is expected to be the result of a combination of several causes with genetic predisposition....In conclusion, this is the first study to identify the ceRNA network in rosacea....The lncRNAs and mRNAs identified in our study may play key roles in rosacea development....More in-depth researches are needed to better characterize the lncRNAs and mRNAs in rosacea." [2]
More Research on Competing endogenous RNA (ceRNA) Needed
Do you want more research on this for rosacea? Could a non profit rosacea patient advocacy grassroots organization collect donations and sponsor such an investigation? Could 10K members each donate ONE DOLLAR to do this?
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.
End Notes
[1] Competing endogenous RNA, Wikipedia
[2] Biomed Res Int. 2020;2020:9705950 Full Text
Identification of Long Noncoding RNA Associated ceRNA Networks in Rosacea.
Wang L, Lu R, Wang Y, Wang X, Hao D, Wen X, Li Y, Zeng M, Jiang X -
Gold nanoshell-mediated Photothermal therapy (PTT) has been used to treat acne. [1] There is a paper on using PTT for rosacea. [2] Photothermal therapy "is an extension of photodynamic therapy, in which a photosensitizer is excited with specific band light. This activation brings the sensitizer to an excited state where it then releases vibrational energy (heat), which is what kills the targeted cells. Unlike photodynamic therapy, photothermal therapy does not require oxygen to interact with the target cells or tissues. Current studies also show that photothermal therapy is able to use longer wavelength light, which is less energetic and therefore less harmful to other cells and tissues." [3] Gold nanoparticle-mediated PTT has been used to target cancer so there are more papers on this subject. [4]
Naomi Halas (Rice University, TX, USA) created the gold-silica nanoshells in 1997 demonstrating by varying the thickness of the gold shell that the nanoshells interactions with specific wavelengths of light could be tuned. These gold nano shells are 150 nm in thickness. At least one company, Nanospectra, manufactures Auroshell. [5]
Auroshell is an inert, non toxic particle fifty times smaller than a red blood cell.
One paper on using gold nanoshell-mediated PTT for acne states, "The treatment of enlarged facial pores with gold nanoshell-mediated PTT produced excellent results with no side effects." [6]
The paper on using gold nano shell-mediated PTT for rosacea full text is available for purchase by Wiley Online as seen below but the RRDi is broke and we can't even purchase this to review the research paper full text. So do you understand why the RRDi needs donations to keep going? But you will always have Facebook, Reddit and the other rosacea social media groups when the RRDi dissolves due to lack of funds since we will be out of funds soon.
More Research on Gold nanoshell-mediated PTT
Do you want more research on this for rosacea? Could a non profit rosacea patient advocacy grassroots organization collect donations and sponsor such an investigation? Could 10K members each donate ONE DOLLAR to do this?
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.
End Notes
[1] Dermatol Ther. 2020 Jan;33(1):e13189. doi: 10.1111/dth.13189. Epub 2019 Dec 23.
Gold nanoshell-mediated photothermal therapy for acne vulgaris
Kui Young Park, Hye Sung Han, Ji Yeon Hong, Seong Jun Seo, Sang Ju LeeLasers Surg Med. 2019 Oct;51(8):686-693. doi: 10.1002/lsm.23099. Epub 2019 May 14.
Acne Treatment With Light Absorbing Gold Microparticles and Optical Pulses: An Open-Label European Multi-Centered Study in Moderate to Moderately Severe Acne Vulgaris Patients
Christine Sofie Krohn Fuchs, Christiane Bay, Maurice Adatto, Hans Lomholt, Merete Haedersdal[2] Photodermatol Photoimmunol Photomed. 2020 Dec 11;:
Gold photothermal therapy for refractory papulopustular rosacea: A case series.
Park KY, Han HS, Park JW, Lee HW, Seo S[3] Photothermal Therapy, Wikipedia
[4] 592,000 results for “Gold nanoparticle-mediated” in Semantic Scholar
[5] Nanospectra
[6] Med Laser 2019;8(2):97-100 https://doi.org/10.25289/ML.2019.8.2.97 pISSN 2287-8300ᆞeISSN 2288-0224
Gold Nanoshell-Mediated Photothermal Therapy for Facial Pores
Sang Ju Lee, Jeanne Jung, Seung Hui Seok, Dong Hyun Kim
Gold_Nanoshell-Mediated_Photothermal_Therapy_for_F.pdf -
1 hour ago, Andrea Hernandez Nunez said:
How do they inject this? In muscle or subcutaneously ?
"Subcutaneous injection of botulinum toxin A is equally effective in achieving paralysis of the underlying frontalis muscle as IM botulinum toxin A administration. In addition, the SC route may result in less pain to patients receiving botulinum toxin A injection for rejuvenation of the upper face."
JAMA Facial Plast Surg. May-Jun 2014;16(3):193-8. doi: 10.1001/jamafacial.2013.2458.
Subcutaneous vs intramuscular botulinum toxin: split-face randomized study
Eli A Gordin, Adam L Luginbuhl, Timothy Ortlip, Ryan N Heffelfinger, Howard Krein"The injections used during BOTOX treatments are administered both directly into the muscle (intramuscular) and into the area between the skin and the muscle (subcutaneous). These injections are felt as tiny pin pricks."
How BOTOX® Is Injected"Ideally, Botox is administered directly into the desired muscle, making it an IM injection. However, Botox is often administered as a subcutaneous facial injection in the tissue overlying the target muscle, and diffusion of the neurotoxin into the underlying muscle produces the desired effect."
Injection: The Third Method of Drug Administration"The most popular area of use for BOTOX® is the face. By relaxing different facial muscles – from the forehead to the neck – wrinkles can be minimised, resulting in the smoothing of the overlying skin."
Where on the Face Can BOTOX® Be Injected?"But it differs from conventional Botox as it does not iron out wrinkles caused by muscle contractions.” That's right: Botox injected at the top layer of the skin works to control oil and redness while making pores appear smaller, which could mean fewer breakouts, but won't stamp out wrinkles."
“Microdosing” Is The New Botox Trend Spiking In New York & L.A.
-
-
The answer to the question is to social media platforms.
What can you do to volunteer?
Watch this trailer (less than a minute)Longer Version Below
This post is about rosacea and social media platforms where all the rosaceans have gone and is an in-depth deep dive into this subject. Before we look at some of the data on this it would be good to go back in time and look at the history of the internet and rosacea, before the advent of social media. *
Sixteen years ago when the RRDi was founded by rosacea sufferers with the motive to form a grassroots patient advocacy group that could have a united voice to the medical community who at that time didn’t take any rosacea patient advocacy group for rosacea seriously because none existed. Does the medical community take seriously a united effort from any social media platform group on rosacea that is a grassroots patient advocacy group? I will let you think about that question.
There were two such organizations formed in 2004, one by David Pascoe (and others) and the other, the RRDi which involved myself (and others) who split into two camps. David Pascoe opted to using an html website for his non profit organization for rosacea and we opted for the Invision Power Board platform. David’s non profit, the Rosacea Research Foundation, was a similar grassroots organization that was more popular, raising $16K in a very short time and then quickly disbanded by the end of 2005, donating the entire money raised to the NRS, which was ironic, since both the RRDi and the RRF were formed because rosaceans wanted their own grassroots organization and were not happy with the NRS and its organization, how it was spending its donations, mostly on private contractors owned by one of the NRS board members, and very little on rosacea research. But the glimmer of hope is that the RRF shows what can be done with a grassroots patient advocacy non profit organization.
The RRDi software platform was Invision Power Board which evolved into the Invision Community.
The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies.
The RRDi eventually hosted the entire website and forum on Invision Community servers. The RRDi continued to grow with members (1.3K) and small donations and over the course of almost seventeen years we have received around $15.5K which is around $900/year in donations. We did spend about $6K on education grants sponsored by Galderma and the rest spent to keep the website going and legally continue as a non profit with registration fees and published one edition of our print on demand journal. It does cost money to keep a non profit organization going, even if no one is receiving a salary, no employees and no payments to private contractors owned by one of the board members. We don’t do that. Everyone is a volunteer. Pro bono.
Then over the years the members and posts have dropped to nearly zero. We know we have traffic to our website because Google Analytics shows we do, nearly 4K visit our website each month, but they do not engage. So what happened? Where have all the rosaceans gone? Back in 2004 there were many volunteers and they were working hard to create a grassroots, rosacea patient advocacy non profit organization. Where are they now?
Around the same time the RRDi was formed, Zuckerberg began Facebook, a social media and social networking service, with a different but similar platform as the ‘forum’ style platform and Facebook took off and exceeded all expectations and became the number one social platform. Others followed, i.e., Instagram, Twitter, Reddit and that list goes on.
According to Search Engine Journal, in 2020 Facebook has 2.45 billion users, Instagram 1 billion users, Reddit 430 million, Snapchat 360 million, Twitter 330 million users, Pinterest 320 million, LinkedIn 310 million. So let's analyze where the rosaceans are on these social media platforms and what they are doing.
When you do a rosacea search on Facebook you can find where rosaceans have gone. The number one Facebook that comes up is the NRS with nearly 40K friends and 41K followers.
This non profit organization for rosacea has spent 10% of its donations on rosacea research over a twenty year period. 60% of the donations are spent on two private contractors owned by one of the board members. The Board Members of this Non Profit Organization are NOT rosaceans, and are comprised of businessmen (three), dermatologists (two), one RN, and a medical editor. For More Information. This non profit is heavily sponsored by pharmaceutical companies which is shown on its website if you scroll towards the bottom you will see the following:
While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?As far as known, the Rosacea Support Group is the next largest Facebook group with 15K followers and 14K likes. It states clearly that this is a non profit organization but there is absolutely no evidence that RSG is registered as non profit. This is David Pascoe's group and his website is making money because there are affiliate links and sponsors for rosacea treatments but there is no evidence that this group engages in any rosacea research or has any influence on the medical community.
RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma.
The Rosacea Spanish Facebook has 6K followers and nearly 6K likes.
Rosacea Awareness says it is an actual 'community' and the official link is to StudyKIK.com which is a site for clinical trials. The about page at StudyKik says, "StudyKIK is the leading website where clinical trial companies list their studies and eager volunteers find them to sign up instantly." The Facebook ABOUT page doesn't explain who is running it but on the MORE INFORMATION link at the bottom of the page it links to its Instagram page that doesn't explain who this Facebook account belongs to but obviously it is somehow connected to StudyKik who say they are 'volunteers.' Nevertheless, 5.5K follow and like this Facebook Group. Do you think this social media 'community' has any influence on the medical community as a voice for rosaceans? It has 13K followers and likes.
If you know of any other rosacea Facebook groups which should be in this list, please find the reply button and let us know.
While there are rosaceans obviously on Instagram, figuring out which one is the most popular is difficult to say the least. Some of the ones who come up in the search box are #rosacea, #rosácea, #rosaceatreatment, #rosaceaskincare, and this list goes on and on. For example, the NRS has an account shown below:
As previously mentioned about the NRS Facebook group and how this non profit represents businessmen and dermatologists who are the voice behind this organization and is not run by rosacea sufferers, apparently, the NRS Instagram isn't as popular with posts and followers as its Facebook group is. If you know of an Instagram account that is more popular that should be mentioned, please find the reply button and let us know. There are rosaceans at Instagram but are any accounts representing rosacea sufferers as a united group that influences the medical community about rosacea?
Reddit appears to be the more popular social media website for rosaceans. There are 'subreddits' that are specifically made up of rosaceans while there are other subreddits that discuss rosacea, i.e., r/SkincareAddiction (1.2m members), r/30PlusSkinCare (124K members), r/medical (63.8K members), r/Accutane (29.6K members), r/AusSkincare (27K members) and others but we will mention one rosacea subreddit below:
You can see the number of members above in this subreddit and now lets try to figure out who runs this? Note below the results:
Does this give you an idea of who is running this huge subreddit? Is this a registered non profit organization? Is it run by businessmen or medical professionals? What credentials are behind the moderators? Why do they hide behind cryptic display names? This gives you an idea of where the rosaceans have gone and rosaceans love it this way, behind cryptic display names. Do you think that this subreddit rosacea group with 21K members have any influence on the medical community to find the cure for rosacea or engage in any rosacea research?
Are there rosaceans on snapchat? Did a search on 'stories' and got this result:
Did a google search with no results either. So if you know if there are rosacea sufferers on snapchat, can you please find the reply button to this post and tell us what you know.
Did a search on twitter with 'rosacea' and all sorts of 'tweets' come up but there isn't any one post that shows a united effort for rosaceans to come together into one cohesive patient advocacy group. Searched the 'National Rosacea Society' and discovered it has 3201 followers and 563 following on December 1, 2020 (which we mentioned about in Facebook and Instagram). Doesn't appear that there is any attempt with rosaceans to unite with twitter into one large group with a 'voice.'
Did a search on Pinterest using the 'board' as the choice and got a number of 'boards' shown below or you can see for yourself by clicking here.The first one on the top left is Talonted Lex, a beauty blogger, who has rosacea and on Pinterest has 9.5K followers. The second one on the top row from the left is May Lindstrom Skin who has a 'lifelong battle with severe eczema and perioral dermatitis' with 2.6K followers at Pinterest. The third one from the left top row is Clare Baucom who doesn't explain who she is but has 1.9K followers on her 'Rosacea Sensitive Skincare' and lots of over the counter treatments. This keeps on going but most of the 'boards' are selling over the counter treatments for rosacea. Do you know of any 'board' at Pinterest that is the voice of all rosacea sufferers in a patient advocacy united group that the medical community listens to?
Did a search on LinkedIn and not much happening with rosaceans at this social media business connection site. Professor Tony Chu started a charity named the The Acne & Rosacea Association UK with 57 members. Rosacea Care, who offers treatments for rosacea, is also listed. PCA who also offers treatments for rosacea is listed with 600 members. Not much happening with rosacea patient advocacy movements at LinkedIn.
Conclusion
This is an in-depth look done in December 2020 searching where all the rosaceans have gone and they are happy posting in the above social media groups and could care less if there is any movement to create a grassroots rosacea patient advocacy group like the RRDi. So if you are happy with what is currently happening with where all the rosaceans have gone, good for you.
Et Cetera
What is your idea of what a rosacea non profit should be doing?
Comparing Non Profit Organizations with their Mission
Grassroots Rosacea Non Profit Organization
Reply to this Topic
There is a reply to this topic button somewhere on the device you are reading this post.
* An article published in The Atlantic, WHY THE PAST 10 YEARS OF AMERICAN LIFE HAVE BEEN UNIQUELY STUPID by Jonathan Haidt confirms why rosaceans have left in a mass exodus over to social media.
-
"Patients with rosacea have elevated levels of cathelicidin and elevated levels of stratum corneum tryptic enzymes (SCTEs). Cathelicidin is cleaved into the antimicrobial peptide LL-37 by both kallikrein 5 and kallikrein 7 serine proteases. Excessive production of LL-37 is suspected to be a contributing cause in all subtypes of Rosacea. Antibiotics have been used in the past to treat rosacea, but antibiotics may only work because they inhibit some SCTEs." [1]
"In mice, injection of onabotulinum toxin A significantly reduced LL-37-induced skin erythema, mast cell degranulation, and mRNA expression of rosacea biomarkers...These findings suggest that onabotulinum toxin reduces rosacea-associated skin inflammation by directly inhibiting mast cell degranulation. Periodic applications of onabotulinum toxin may be an effective therapy for refractory rosacea and deserves further study." [2]
Botox has been used to treat rosacea for some time now. [3]
More information on Botox for Rosacea
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.End Notes
[1] Cathlecidin, Wikipedia
[2] J Dermatol Sci. 2019 Jan; 93(1): 58–64.Author manuscript; available in PMC 2020 Nov 22.
Botulinum toxin blocks mast cells and prevents rosacea like inflammation
Jae Eun Choi, MD, Tyler Werbel, MS, Zhenping Wang, PhD, Chia Chi Wu, BS, Tony L. Yaksh, PhD, and Anna Di Nardo, MD, PhDEt cetera
Cathelicidin Peptide LL-37 and Vitamin D3
Hydroxychloroquine Suppresses LL37-induced Mast Cells
Alarmins, Vitamin D, And Other Info
-
-
I decided to try this and bought the Tea Tree Essential Oil for $9 shown above and added one tablespoon into six ounces of baby shampoo and just tried my first treatment to my scalp and face. Kept this mixture on my scalp for five minutes and rinsed. Will update my progress.
Update:
Been using this for a month and definitely improves folliculitis. Highly recommend. My ratio now is three ounces of TTO to seven ounces of baby shampoo. -
-
"Arthralgia and myalgia had the same percentage as reported by the control group and in normal populations; however, Raynaud's phenomenon was slightly greater than reported in the 2 control group and the general populations. There could be an inverse relationship between Raynaud's treatment with vasodilators and rosacea flushing symptom."
A Clinico-Pathological Investigation of Rosacea with Particular Regard to Systemic Diseases, Dr. Mustafa Hassan Marai -
We are compiling a list of arachnicide treatments for rosacea. If you have one we missed, please reply to this post. That is what volunteering is all about, helping other rosaceans find information to treat and ultimately cure rosacea. Arachnicides kill demodex mites.
Arachnicide Treatments for Rosacea
Anti-Parasitic Prescription Agents for Rosacea
Oral Ivermectin and Metronidazole
Ornidazole tablets (500 mg twice a day) and recombinant bovine basic fibroblast growth factor gel (0.2 g/cm twice a day) for an 8-week period (4th post by J Rush)
-
Raynaud syndrome on female airman's hand image courtesy of Wikimedia Commons
Eilleen66 [post no 5] points out at RF, "I was pointing out the coincidence that a lot of people who have rosacea also have Raynauds type symptoms." So I thought I would do a little research on this using the search tool here at the RRDi website by simply typing in 'Raynaud' and see what comes up. Didn't do a Google search, since that takes more time and effort. Are you up to the task of really investigating this subject, googling it, and then add to this thread? Not many are really into doing rosacea research but would rather 'rely on social media groups' to 'help them deal with this disease' [rosacea]. If you do find some point related to this subject, wouldn't it be incredible if you volunteered to post your search results in this thread to help other rosaceans who may be searching this same subject? Be sure to rely on social media groups for your information as most rosaceans do instead of published clinical papers in medical journals. Just kidding.
First off, while exposure to heat and cold is listed on most rosacea trigger lists, i.e., the NRS trigger factor list, there hasn't really been any clinical papers on this subject, as far as known, with double blind, placebo controlled, peer reviewed studies. Also it is not established in any known papers that a lot of rosaceans have Raynaud type symptoms. There are some papers that says 'some' rosaceans have Raynaud syndrome. Wouldn't it be nice to know in a huge study of say 2000 rosaceans what percentage have Raynaud syndrome? Who would pay for such a study?
Wouldn't it be incredible if a rosacea patient advocacy group like the RRDi got 10K members together who all agreed that this should be investigated whether 'a lot of rosaceans have Raynaud type symptoms' and decided they wanted this investigated with an actual double blind, placebo controlled peer reviewed clinical study. If 10K members each gave ONE DOLLAR and everyone agreed this should be done, do you think we could offer this money to some worthy, reputable clinician to actually investigate this subject, i.e., possibly one of the RRDi MAC members or some other reputable authority?
So what are the results of my search using the RRDi search tool on our website? Note below my results with bold added for emphasis:
"A notably high percentage of patients had neurologic (43% [6 of 14]) or neuropsychiatric (50% [7 of 14]) conditions, including complex regional pain syndrome, essential tremor, depression, and obsessive-compulsive disorder. Neurovascular disorders, including headaches (71% [10 of 14]) and Raynaud phenomenon (29% [4 of 14]), as well as rheumatologic disorders (36% [5 of 14]), including lupus, rheumatoid arthritis, fibromyalgia, mixed connective tissue disease, and psoriatic arthritis, were also common." Neurogenic Rosacea
"There is a clear subset of patients seen by both neurologists and dermatologists, whose main complaints are facial pain and dysesthesias. These patients often have a history of prominent facial flushing and blushing in response to various stimuli such as emotional stress, hot beverages, alcohol, spicy foods, exercise, heat, and sun exposure. They may also have erythematous papules and pustules. This cluster of features is most consistent with a diagnosis of rosacea but, when combined with the pain and dysesthesias, a form of complex regional pain syndrome must also be considered. In addition, some patients may have concurrent erythromelalgia and Raynaud's disease, suggesting that the etiology is perhaps more complex." Neuropathic Rosacea
"The role of Helicobacter pylori (HP) in some digestive diseases (gastritis, ulcer, gastric cancer, MALT lymphoma) is well known. It has been suggested relatively recently that infection with HP can be involved in various extra-digestive conditions: respiratory disorders (chronic obstructive pulmonary disease, bronchiectasis, lung cancer, pulmonary tuberculosis, bronchial asthma); vascular disorders (ischaemic heart disease, stroke, primary Raynaud phenomena, primary headache); autoimmune disorders (Sjogren syndrome, Henoch-Schonlein purpura, autoimmune thrombocytopenia, autoimmune thyroiditis, Parkinson's disease, idiopathic chronic urticaria, rosacea, alopecia areata); other disorders (iron deficiency anaemia, growth retardations, liver cirrhosis). Case studies, small patient series and non-randomized trials that have shown a beneficial effect of HP eradication in different conditions are not convincing."
Extragastric manifestations of Helicobacter pylori infection."Biofeedback can improve cutaneous problems that have an autonomic nervous system component. Examples include biofeedback of galvanic skin resistance (GSR) for hyperhidrosis and biofeedback of skin temperature for Raynaud's disease."
Biofeedback, cognitive-behavioral methods, and hypnosis in dermatology: is it all in your mind?"In the capillaroscopic examination in all patients with rosacea atypical capillaries were found. The abnormal capillaries were present in 10 volunteers (63%). In the rosacea group the most common occurred: Raynaud loops in 10 cases (62.5%), meandering capillaries and their elongation also in 10 patients (62.5%) and increasing number of the capillaries in 13 examined persons (81.25%). In the control group the presence of stenosed capillaries was confirmed in 3 examined persons (18.75%) with good visualized subpapillary venous plexus also in 3 cases (18.75%)."
Assessment of microcirculatory system with conventional capillaroscopy in patients with rosacea--preliminary study"Mirvaso gel should be used with caution in patients with depression, cerebral or coronary insufficiency, Raynaud's phenomenon, orthostatic hypotension, thromboangiitis obliterans, scleroderma, or Sjögrens syndrome. Alpha-2 adrenergic agents can lower blood pressure."
FDA OKs Topical Gel to Take Red Out of Rosacea - (Mirvaso)"Use with caution in patients with cerebral or coronary 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.' Warning About Using Rhofade With Cardiovascular Disease
-
One report on this subject states, "the risks of some comorbidities in patients with rosacea are somewhat contradictory, depending upon the study design. Moreover, pathomechanisms associated with the comorbidities of patients with rosacea remain poorly elucidated."
Int J Mol Sci. 2020 Nov 10;21(22):
Updates on the Risk of Neuropsychiatric and Gastrointestinal Comorbidities in Rosacea and Its Possible Relationship with the Gut-Brain-Skin Axis.
Woo YR, Han YJ, Kim HS, Cho SH, Lee JD -
-
A paper recommends "light-emitting diodes therapy combining blue (480 nm) and red (650 nm) light" that "this kind of treatment could represent an effective, safer, and well-tolerated approach for the treatment of such conditions [rosacea]".
J Med Case Rep. 2020 Jan 28;14(1):22
Coupled blue and red light-emitting diodes therapy efficacy in patients with rosacea: two case reports.
Sorbellini E, De Padova MP, Rinaldi F -
-
Clinical Reset by CelleRx according to the manufacturer is "A powerful daily mist, Clinical Reset’s hero ingredient; Hypochlorous Acid (HOCl), eradicates the leading causes of redness, irritation and skin damage without stripping the skin. Part of your immune system’s natural response, HOCl is a naturally occurring compound produced by your white blood cells to fight trauma and infection."
Cost: $54 at this page.
Ingredients:
Pure hypochlorous acid, .01% as a preservative in saline."In a recent study, a saline hygiene solution preserved with pure hypochlorous acid was shown to reduce the bacterial load significantly without altering the diversity of bacterial species on the eyelids. After 20 minutes of treatment, there was >99% reduction of the Staphylococci bacteria."
Stroman, D. W; Mintun, K; Epstein, A. B; Brimer, C. M; Patel, C. R; Branch, J. D; Najafi-Tagol, K (2017). "Reduction in bacterial load using hypochlorous acid hygiene solution on ocular skin". Clinical Ophthalmology. 11: 707–714. doi:10.2147/OPTH.S132851. PMC 5402722. PMID 28458509.Cool video showing the spray mist:
There are some less expensive hypochlorous sprays for your consideration mentioned in the next post.
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.
-
Zilxi is the first monocycline topical foam to be approve for rosacea by the FDA and is now available.
Now available announced by Vyne Therapeutics. Ask your dermatologist. Post your experience in this thread. Find the reply button.
"The Company also announced that the annual list price of ZILXI will be $485 per 30-gram canister, in parity with the wholesale price of AMZEEQ® (minocycline) topical foam, 4%, the Company's topical minocycline indicated for the treatment of inflammatory lesions of non-nodular moderate to severe acne vulgaris in adults and pediatric patients 9 years of age and older."
PR Newswire Association LLC. All Rights Reserved. A Cision companyWe have been following minocycline topicals for rosacea for some time now. For more information.
HIGHLIGHTS OF PRESCRIBING INFORMATION
For more information on the Zilxi savings card
Zilxi is a minocycline topical foam that has been going through clinical trials for some time now. It has been announced recently as FDA approved for rosacea (see fifth post in this thread). Minocycline, a tetracycline drug, has been shown to be just as effective as doxycycline for rosacea. If you are using Zilxi please find the reply button and post your experience using this new treatment for rosacea.
Reply to this Topic
There is a reply to this topic button somewhere on the device you are reading this post.
-
Dermadexin (also known as Pruridexin or Helioclin® Dermatitis SD Cream) is a topical treatment for dermatitis and seborrhoeic dermatitis developed by Astion Pharma with a unique mechanism of action using a Fatty acid amide hydrolase (FAAH) inhibitor and a NF-kappa B (NF-kB) inhibitor designated as pyridine-3-carboxamide glyceryl monocaprylate (P3CGM), which has an excellent topical safety profile demonstrating a broad range in pre-clinical studies. [1]
It was announced in August 2015 that the FDA accepted 510(k) submission for Dermadexin. [2]
There is now available an over the counter topical, Astion Face Cure (active ingredient Dermadexin), available at Amazon UK or on the Astion Pharma website.
Astion Face Cure contains the active ingredient Dermadexin [Pruridexin] and the inactive ingredients water, liquid paraffin, cetostearyl alcohol, glycerol, niacinamide, sodium cetostearyl sulphate, glyceryl monocaprylate and benzyl alcohol.
Anecdotal Reports
There are at least a couple of positive reports of using the Astion Face Cure, Boris started a thread on this, and post no 141 by freixinet.
End Notes
[1] Dermadexin Executive Summary
[2] FDA Accepts Dermadexin 510(k) Submission, Aug 6th, 2015, Medesthetics
-
While there are reports of successfully using isotretinoin for rosacea that are positive, there are also negative reports like this one. The video below by Leginairerpg is discussing high dose isotretinoin and is NOT discussing low dose isotretinoin which is one of the current state of the art 'off label' treatments for rosacea.
Video by Legionnairerpg
About: This video deals with the effects of ROACCUTANE. If you have spots, don't take this drug, it's the worst you can do for your mind and your body. I m a french victim of this "medic", i fight now for the truth.
Read the comments how controversial this drug has become (at high doses).
-
"Inflammatory conditions such as rosacea, granuloma annulare, and hidradenitis suppurativa benefit from lower oral isotretinoin dosage of 0.3-1 mg/kg/day, whereas, hyperkeratotic diseases such as psoriasis and pityriasis rubra pilaris, consistently respond better to higher dosages of up to 2-4 mg/kg/day for lesion clearance."
Arch Dermatol Res. 2020 Nov 05;:
Oral isotretinoin for the treatment of dermatologic conditions other than acne: a systematic review and discussion of future directions.
Chu S, Michelle L, Ekelem C, Sung CT, Rojek N, Mesinkovska NA-------------------------------------------------------------------
"We hypothesized that isotretinoin induces remission of acne by normalizing the innate immune response to the commensal bacterium P. acnes. Compared to normal subjects, peripheral blood monocytes from acne patients expressed significantly higher levels of TLR-2 and exhibited significantly greater induction of TLR-2 expression following P. acnes stimulation. Treatment of patients with isotretinoin significantly decreased monocyte TLR-2 expression and subsequent inflammatory cytokine response to P. acnes by one week of therapy. This effect was sustained six months following cessation of therapy, indicating that TLR-2 modulation may be involved in the durable therapeutic response to isotretinoin. This study demonstrates that isotretinoin exerts immunomodulatory effects in patients and sheds light on a potential mechanism for its long-term effects in acne."
J Invest Dermatol. Author manuscript; available in PMC 2013 Apr 2.
Published in final edited form as:
J Invest Dermatol. 2012 Sep; 132(9): 2198–2205.
Systemic isotretinoin therapy normalizes exaggerated TLR-2-mediated innate immune responses in acne patients
Melanie C. Dispenza, Ellen B. Wolpert, Kathryn L. Gilliland, Pingqi Dai, Zhaoyuan Cong, Amanda M. Nelson, and Diane M. Thiboutot1,
AHA, BHA and Retinoids and Rosacea - A question to Whitney Bowe, M.D.
in Ask the MAC
Posted
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.