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Thread: Retinoid highly recommended by top-rated dermatologist on RRDi

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    Default 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; 21st June 2020 at 09:25 PM.

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    Senior Member Mistica's Avatar
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    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.
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    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; 1st July 2020 at 03:10 AM.

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    Senior Member Brady Barrows's Avatar
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    Quote 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.
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    Quote 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; 25th June 2020 at 02:43 PM.

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    Quote 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..

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    Quote 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.

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    Senior Member Brady Barrows's Avatar
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    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; 30th June 2020 at 02:37 PM.
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    Quote 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.

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    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; 2nd July 2020 at 02:18 PM.

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