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  • Retinoid highly recommended by top-rated dermatologist on RRDi

    I've never really seen too many reports on using a retinoid for type 1, but I had the chance to visit a dermatologist from the RRDI list (https://irosacea.org/mac/) and she highly recommended it. She said the "evidence from dermatologists that it works is profound" and recommended I use it for my type 1.

    What do you guys think? I was honestly a bit surprised about this recommendation.

    Insurance doesn't cover this, so it's $120 but I'm going to try the samples when they come in.
    Last edited by beherenow; 21 June 2020, 09:25 PM.

  • #2
    She said the "evidence from dermatologists that it works is profound"
    I believe that statement is erroneous and there is no evidence whatsoever that I know of that supports the use of retinoids in type one.
    In fact they can cause or worsen rosacea.
    I am one of those people.
    Both topical and oral retinoids have played a role into pushing my very well controlled mild rosacea into really severe flushing.

    Even normal skins suffer significant irritation from retinoids.
    When normal skins are irritated from a product, in most cases, the person can stop using the product and after a few weeks, the skin will return to 'normal'. IE, pre-retinoid use.
    The problem with rosacea skin, and particularly type one and flushers, is that inflammation promotes more inflammation and it can be very difficult for the skin to recover. Often the inflammation and increased symptoms become the new 'norm' and it is an extremely difficult cycle from which to escape.


    There is one lady here, who after being on LDN for a period of time has successfully introduced topical retinoids with success and there are also the odd reports of other people using products with little issue, but in general, retinoids have a very poor record for our skins.

    I am sure you can find similar opinions by going through the archives on this forum.

    A number of people here find topical niacinamide to be useful in reducing symptoms and strengthening the skin. If it is low dose, it is generally non irritating as long as it is in a benign base.

    There are a number of studies supporting it's use, which can be easily googled.
    Previous Numerous IPL.
    Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

    Comment


    • #3
      Thanks for your feedback. Yes, I was also surprised as I haven't come across any successful reports either. Here's an old article where she (the dermatologist I visited) recommends it: https://www.dermatologytimes.com/vie...argets-rosacea

      She made a pretty confident claim that it's effective and promulgated by dermatologists across the board, which does make me somewhat skeptical now -- although I did really like her. She was actually telling me she had rosacea herself and has been using different retinoids for awhile now. So I'd love to hear some more perspectives if anyone out there is a proponent of retinoids.

      I've seen about 3 dermatologists over the last few years now and it just doesn't seem like they take enough time to read through some of the anecdotal reports of the products they recommend. A different dermatologist I visited was totally ignorant about the negative reactions people have experienced with Rhofade and Mirvaso.

      All in all, I'm not sure of the best course of action for me at the moment. I have mild type 1 -- and I'm basically keeping it simple with sodium sulfacetamide face wash and a moisturizer. Occasionally I'll take a beta blocker. I'm honestly skeptical of any topical because it does seem like the primary culprit for me is just blood vessels, and rosy cheeks do run in my family. Just trying to manage things as best as I can so it doesn't worsen over the next ~50 years of my life (in my early 20s).
      Last edited by beherenow; 1 July 2020, 03:10 AM.

      Comment


      • #4
        Originally posted by beherenow View Post
        I've never really seen too many reports on using a retinoid for type 1, but I had the chance to visit a dermatologist from the RRDI list (https://irosacea.org/mac/) and she highly recommended it. She said the "evidence from dermatologists that it works is profound" and recommended I use it for my type 1.
        What do you guys think? I was honestly a bit surprised about this recommendation.
        Insurance doesn't cover this, so it's $120 but I'm going to try the samples when they come in.
        The usual formula for low dose isotretinoin is a "dosage range of 0.5 to 1mg/kg/day." [1]

        Typically this would be .3 mg/kg/day. Another report states, "Very low-dose isotretinoin (e.g., 10–20 mg once to five times a week, equivalent to 5 mg/day) is an effective treatment for mild to moderate papulopustular rosacea and is well tolerated." [2]

        So you didn't say whether you were recommended high dose isotretinoin or low dose isotretioin? Most of the negative reports about isotretinoin are those who take high dose. Here is a list of anecdotal reports.

        End Notes

        [1] J Clin Aesthet Dermatol. 2011 Sep; 4(9): 54–61.
        Use of Oral Isotretinoin in the Management of Rosacea
        Hyunhee Park, DO and James Q. Del Rosso, DO, FAOCD

        [2] Australasian Journal of Dermatology, DOI: 10.1111/ajd.12522
        Very low-dose isotretinoin in mild to moderate papulopustular rosacea; a retrospective review of 52 patients
        Marius Rademaker, DM.
        Brady Barrows
        Blog - Join the RRDi


        Comment


        • #5
          Originally posted by beherenow View Post
          I've never really seen too many reports on using a retinoid for type 1, but I had the chance to visit a dermatologist from the RRDI list (https://irosacea.org/mac/) and she highly recommended it. She said the "evidence from dermatologists that it works is profound" and recommended I use it for my type 1.

          What do you guys think? I was honestly a bit surprised about this recommendation.

          Insurance doesn't cover this, so it's $120 but I'm going to try the samples when they come in.
          Whoa. Did the dermatologist test you for microscopic Demodex Skin Mites BEFORE recommending isoretinin/Accutane? I would not take that drug until Demodex is ruled out.

          Accutane/isoretinin has a lot of serious side effects. Accutane/isoretinin works by reducing the output of the oil glands. Demodex eat oil. Reducing the oil in the skin will starve off some of the demodex. But that drug will not directly kill the mites. Once you are off the drug the mite population can bounce back. Over on the Acne.org forums there are many horror stories of accutane side effects and people who are on their 2nd and 3rd rounds of the drug because the "acne" keeps coming back. I suspect that many of these people may have the very common demodex skin mites. Starving the mites of their food may make the skin look better for a while. But once they are off the accutane and the oil returns the mite population rebounds.

          Ask for a demodex test. If the root cause is demodex, the anti-parasitic treatment is much safer, more effective, simpler and potentially shorter. Treatment with the topical Soolantra may be all you need. The topical course takes 12-16 weeks of nightly treatment with the cream. A 2 week oral treatment using Oral Ivermectin and Oral Metronidazole is highly effective and is likely to be far safer than many months on Accutane/isoretinin.

          A good dermatologist can test for demodex with either the light skin scraping test or the glue on a slide test to collect a sample of demodex. Counting demodex under the microscope is tricky. The mites don't like light and will scuttle to the edge of the microscope slide. Some doctors will prescribe the anti-parasitic treatment to rule it out rather than trying to do the tests.

          Accutane/isoretinin Side Effects Reported by users: Hair loss, Extremely dry skin, cracked chapped lips, dry eye, eye irritations, skin prone to infections and subcutaneous infections, skin peeling, dry mouth. Bone tenderness, Loss of visual acuity Extreme sensitivity to sunlight. Liver problems. Reduction of Libido. Birth defects if taken while pregnant. The list goes on.
          https://www.webmd.com/drugs/2/drug-6...st-sideeffects
          Last edited by ElaineA; 25 June 2020, 02:43 PM.

          Comment


          • #6
            Originally posted by ElaineA View Post
            Whoa. Did the dermatologist test you for microscopic Demodex Skin Mites BEFORE recommending isoretinin/Accutane? I would not take that drug until Demodex is ruled out.

            Accutane/isoretinin has a lot of serious side effects. Accutane/isoretinin works by reducing the output of the oil glands. Demodex eat oil. Reducing the oil in the skin will starve off some of the demodex. But that drug will not directly kill the mites. Once you are off the drug the mite population can bounce back. Over on the Acne.org forums there are many horror stories of accutane side effects and people who are on their 2nd and 3rd rounds of the drug because the "acne" keeps coming back. I suspect that many of these people may have the very common demodex skin mites. Starving the mites of their food may make the skin look better for a while. But once they are off the accutane and the oil returns the mite population rebounds.

            Ask for a demodex test. If the root cause is demodex, the anti-parasitic treatment is much safer, more effective, simpler and potentially shorter. Treatment with the topical Soolantra may be all you need. The topical course takes 12-16 weeks of nightly treatment with the cream. A 2 week oral treatment using Oral Ivermectin and Oral Metronidazole is highly effective and is likely to be far safer than many months on Accutane/isoretinin.

            A good dermatologist can test for demodex with either the light skin scraping test or the glue on a slide test to collect a sample of demodex. Counting demodex under the microscope is tricky. The mites don't like light and will scuttle to the edge of the microscope slide. Some doctors will prescribe the anti-parasitic treatment to rule it out rather than trying to do the tests.

            Accutane/isoretinin Side Effects Reported by users: Hair loss, Extremely dry skin, cracked chapped lips, dry eye, eye irritations, skin prone to infections and subcutaneous infections, skin peeling, dry mouth. Bone tenderness, Loss of visual acuity Extreme sensitivity to sunlight. Liver problems. Reduction of Libido. Birth defects if taken while pregnant. The list goes on.
            https://www.webmd.com/drugs/2/drug-6...st-sideeffects
            Are you referring to the oral medication? She was suggesting a topical retinoid. There's no way, or it would be extremely unlikely, that demodex is the root cause of my type 1 rosacea.

            Here's the quote btw from the dermatogist I visited, albeit a bit oudated she still maintains this perspective:

            "I tell almost every patient I see that we are going to eventually transition them to tretinoin," Dr. Pelle adds. "Whether they have started with a combination therapy that's medical, or whether they have had laser or light therapy, they always finish up with a gentle sunscreen and a topical retinoid. That's the best way, in my opinion, to maintain them." https://www.dermatologytimes.com/vie...argets-rosacea

            Honestly just a bit suprised by her claims that it's accepted widely by dermatologists. Haven't seen a single successful report on here about retenoids..

            Comment


            • #7
              Originally posted by beherenow View Post
              Are you referring to the oral medication? She was suggesting a topical retinoid. There's no way, or it would be extremely unlikely, that demodex is the root cause of my type 1 rosacea.

              Here's the quote btw from the dermatogist I visited, albeit a bit oudated she still maintains this perspective:

              "I tell almost every patient I see that we are going to eventually transition them to tretinoin," Dr. Pelle adds. "Whether they have started with a combination therapy that's medical, or whether they have had laser or light therapy, they always finish up with a gentle sunscreen and a topical retinoid. That's the best way, in my opinion, to maintain them." https://www.dermatologytimes.com/vie...argets-rosacea

              Honestly just a bit suprised by her claims that it's accepted widely by dermatologists. Haven't seen a single successful report on here about retenoids..
              Sorry, I thought you were referring to the oral retinoid, Accutane generic is called Isotretinoin (oral). I've never heard of topical tretinoin being used for Type 1 rosacea either.

              They do recommend treatment with retinoids after people have healed from laser resurfacing to maintain their smoother skin. Topical retinoids will accelerate skin cell turnover by as much as a factor of 2. Keeps the pores unclogged and reduces fine wrinkles. Topical retinoids can also cause excessive dryness, peeling and sun sensitivity. Topical retinoids don't do a thing for demodex skin mites though. Not sure what good a topical retinoid would do for type 1.

              Comment


              • #8
                Topical retinoids are used mainly for acne but obviously Dr. Pelle is recommending for rosacea. Here is an article explaining topical retinoids.

                You should remember that the article was written in 2005 and she did explain. " "I call it 'redefining,' because we used to think of rosacea in a staged type of progression, where one stage moved to the other, but in fact, that doesn't happen," Dr. Pelle says...."Some dermatologists choose to avoid them, because they are more difficult to use, but over the long term, they really do make a difference for these patients," Dr. Pelle says. "In my experience, at one month you get an improved skin texture, at four months flushing is much less frequent, and at one year there is a normal flush response, substantially decreased redness and few to no flares requiring tetracyclines."

                "I tell almost every patient I see that we are going to eventually transition them to tretinoin," Dr. Pelle adds. "Whether they have started with a combination therapy that's medical, or whether they have had laser or light therapy, they always finish up with a gentle sunscreen and a topical retinoid. That's the best way, in my opinion, to maintain them." "

                Another RRDi MAC member, Dr. Stein-Gold, was one of the authors on another paper published in 2017, Why Topical Retinoids Are Mainstay of Therapy for Acne, which is related.

                In another paper by another doctor written in 2017,
                “As an intermediary step between topical antibiotics and oral isotretinoin, we propose that topical tretinoin may be effective in the management and reduction of rosacea symptoms,” Emily Forward, MD, of the University of Sydney, said at the meeting. There has been recent discussion regarding the use of low-dose isotretinoin in the treatment of rosacea, but safety with long-term use is an issue, she noted."
                Source

                So this inspired me to write a short post on this subject.
                Last edited by Brady Barrows; 30 June 2020, 02:37 PM.
                Brady Barrows
                Blog - Join the RRDi


                Comment


                • #9
                  Originally posted by Brady Barrows View Post
                  Topical retinoids are used mainly for acne but obviously Dr. Pelle is recommending for rosacea. Here is an article explaining topical retinoids.

                  You should remember that the article was written in 2005 and she did explain. " "I call it 'redefining,' because we used to think of rosacea in a staged type of progression, where one stage moved to the other, but in fact, that doesn't happen," Dr. Pelle says...."Some dermatologists choose to avoid them, because they are more difficult to use, but over the long term, they really do make a difference for these patients," Dr. Pelle says. "In my experience, at one month you get an improved skin texture, at four months flushing is much less frequent, and at one year there is a normal flush response, substantially decreased redness and few to no flares requiring tetracyclines."

                  "I tell almost every patient I see that we are going to eventually transition them to tretinoin," Dr. Pelle adds. "Whether they have started with a combination therapy that's medical, or whether they have had laser or light therapy, they always finish up with a gentle sunscreen and a topical retinoid. That's the best way, in my opinion, to maintain them." "

                  Another RRDi MAC member, Dr. Stein-Gold, was one of the authors on another paper published in 2017, Why Topical Retinoids Are Mainstay of Therapy for Acne, which is related.

                  In another paper by another doctor written in 2017,
                  “As an intermediary step between topical antibiotics and oral isotretinoin, we propose that topical tretinoin may be effective in the management and reduction of rosacea symptoms,” Emily Forward, MD, of the University of Sydney, said at the meeting. There has been recent discussion regarding the use of low-dose isotretinoin in the treatment of rosacea, but safety with long-term use is an issue, she noted."
                  Source

                  So this inspired me to write a short post on this subject.
                  Interesting, thanks Brady.

                  I'd love to hear from anyone, preferrably with type 1, using topical retinoids. Haven't come across any successful reports on here yet.

                  Comment


                  • #10
                    I tried I believe on my upper neck - a retinaldehyde % that was mentioned in an old French study for type 1 (which I have). It caused redness and irritation badly enough that I didn't want to continue on my neck and didn't want to think about putting on my face.

                    The topical retinoids will activate the sensory nerves / TRPV1 + induce neurogenic inflammation which some rosacea research says is already pathological in our cases. Whether you'll eventually adjust, who knows. If I remember right, the French study (only one I know about on this) is really old, and involves a small sample size. I wonder if someone tried to replicate the research and could not get positive results (which tend not to be published).
                    A derm did recommend I use retin-A after 3-6 rounds of laser therapy for my type 1 and I thought she was crazy. I don't think she knew what she was treating. She was a private cosmetics dermatologist - I now see medical dermatologists at university hospitals.

                    https://pubmed.ncbi.nlm.nih.gov/10473962/
                    Last edited by laser_cat; 2 July 2020, 02:18 PM.

                    Comment


                    • #11
                      Originally posted by laser_cat View Post
                      I wonder if someone tried to replicate the research and could not get positive results (which tend not to be published).
                      This is a subject I have a passion with, rosacea research. Basically there are four non profit organizations for rosacea that have anything to do with rosacea research. One other non profit, the AAD might spend a tiny bit on rosacea research but you would be hard pressed to get an actual amount of how much it spent money on rosacea research.

                      Not considering the RRDi, of the three other rosacea non profit organizations for rosacea, one has taken the lead in sponsoring rosacea research, the NRS, which spends on average 10 cents for every dollar donated to this non profit on rosacea research, and is the leader among the three. The NRS spends the majority (60%) of its donations on private contractors owned by one of its board members. The other thirty percent is spent on running the non profit organization with employees, office expenses, etc. However, because it has done this for so long it has spent the most on rosacea research, even if only 10 percent of its donations actually is spent on rosacea research.

                      The AARS spends about 8 cents on research for a few years, out of every dollar donated to this non profit (techically less than eight cents since some of the research went for acne, not rosacea). In 2018 the AARS spent nothing on research. We have no way of knowing if the ARSC spends any of the donated funds on rosacea research since Canada doesn't require disclosing what non profits spend donations on.

                      The RRDi would love to spend the majority of its donations on rosacea research if there were any funds to do so, but alas, there are no donations coming in for rosacea research. Wouldn't it be a novel idea for rosacea sufferers to get together and sponsor their own rosacea research, i.e., replicating the retinaldehyde French study, or whatever the group wanted to research, instead of the status quo research being done. The vast majority of rosacea research is being sponsored by pharmaceutical companies who one rosacea expert commented, "perhaps not the most credible source of unbiased research." [1]

                      The The National Institutes of Health (NIH) spends yearly over $31 billion and not one cent on rosacea research. [2] You can understand why the NIH ignores rosacea research when you put rosacea in perspective of other diseases. [3]

                      In another related subject that that has an influence on rosacea research is the conflict of interest in dermatological textbooks. [4]

                      So, in conclusion, what would it take to get about 10K rosacea sufferers to each donate one dollar and sponsor their own novel rosacea research like you have proposed? I have a glimmer of hope because over fifteen years ago David Pascoe and his Rosacea Research Foundation pulled rosacea sufferers together and unitedly sponsored rosacea research with $16K. It can be done. David Pascoe owns the Rosacea Forum, this one we are posting in.

                      End notes

                      [1] A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.

                      [2] Rosacea Research in Perspective of Funding

                      [3] Rosacea Research in Perspective of Idiopathic Diseases

                      [4] Dermatological Textbooks Conflict of Interests
                      Last edited by Brady Barrows; 2 July 2020, 01:52 AM.
                      Brady Barrows
                      Blog - Join the RRDi


                      Comment


                      • #12
                        Originally posted by Brady Barrows View Post
                        This is a subject I have a passion with, rosacea research. Basically there are four non profit organizations for rosacea that have anything to do with rosacea research. One other non profit, the AAD might spend a tiny bit on rosacea research but you would be hard pressed to get an actual amount of how much it spent money on rosacea research.

                        Not considering the RRDi, of the three other rosacea non profit organizations for rosacea, one has taken the lead in sponsoring rosacea research, the NRS, which spends on average 10 cents for every dollar donated to this non profit on rosacea research, and is the leader among the three. The NRS spends the majority (60%) of its donations on private contractors owned by one of its board members. The other thirty percent is spent on running the non profit organization with employees, office expenses, etc. However, because it has done this for so long it has spent the most on rosacea research, even if only 10 percent of its donations actually is spent on rosacea research.

                        The AARS spends about 8 cents on research for a few years, out of every dollar donated to this non profit (techically less than eight cents since some of the research went for acne, not rosacea). In 2018 the AARS spent nothing on research. We have no way of knowing if the ARSC spends any of the donated funds on rosacea research since Canada doesn't require disclosing what non profits spend donations on.

                        The RRDi would love to spend the majority of its donations on rosacea research if there were any funds to do so, but alas, there are no donations coming in for rosacea research. Wouldn't it be a novel idea for rosacea sufferers to get together and sponsor their own rosacea research, i.e., replicating the retinaldehyde French study, or whatever the group wanted to research, instead of the status quo research being done. The vast majority of rosacea research is being sponsored by pharmaceutical companies who one rosacea expert commented, "perhaps not the most credible source of unbiased research." [1]

                        The The National Institutes of Health (NIH) spends yearly over $31 billion and not one cent on rosacea research. [2] You can understand why the NIH ignores rosacea research when you put rosacea in perspective of other diseases. [3]

                        In another related subject that that has an influence on rosacea research is the conflict of interest in dermatological textbooks. [4]

                        So, in conclusion, what would it take to get about 10K rosacea sufferers to each donate one dollar and sponsor their own novel rosacea research like you have proposed? I have a glimmer of hope because over fifteen years ago David Pascoe and his Rosacea Research Foundation pulled rosacea sufferers together and unitedly sponsored rosacea research with $16K. It can be done. David Pascoe owns the Rosacea Forum, this one we are posting in.

                        End notes

                        [1] A Personal Critique on the State of Knowledge of Rosacea, Albert M. Kligman, M.D., Ph.D.

                        [2] Rosacea Research in Perspective of Funding

                        [3] Rosacea Research in Perspective of Idiopathic Diseases

                        [4] Dermatological Textbooks Conflict of Interests
                        How about a rosacea crowd funding page for the RRDI

                        Comment


                        • #13
                          Originally posted by Rubydo1 View Post
                          How about a rosacea crowd funding page for the RRDI
                          Thinks thats a great idea.

                          Comment


                          • #14
                            Originally posted by Rubydo1 View Post
                            How about a rosacea crowd funding page for the RRDI
                            Have no idea how to do that. Do you? Volunteering has benefits.
                            Brady Barrows
                            Blog - Join the RRDi


                            Comment


                            • #15
                              Originally posted by Dan3dwards View Post
                              Thinks thats a great idea.
                              If you know anything about how to do this we can sure use volunteers.

                              However, I did a cursory search and discovered you have to make a website and it costs several thousand dollars at this page, and the RRDi already has a website, we are legally setup to take donations which are tax deductable and we don't have that kind of money to do crowd funding. If someone wants to pay for all that and set it up I am willing to listen. Based upon the Wikipedia article on crowdfunding, which is a for profit venture, doesn't seem to fit what rosacea research is all about in this case, and should be a NON PROFIT venture.
                              Last edited by Brady Barrows; 2 July 2020, 05:00 PM.
                              Brady Barrows
                              Blog - Join the RRDi


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