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I'm curious how many of you have been diagnosed with pityriasis folliculorum?

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  • I'm curious how many of you have been diagnosed with pityriasis folliculorum?

    I'm almost 100% certain this is what I have. There's been non stop dryness, the classic white spikes of dry skin coming out of every follicle (which I now know may be clusters of demodex tails), persistant redness and splotchy colored skin. My skin has a sandpaper feel and appearance that looks nothing like eczema or sebhorric dermatitis or rosacea, keratotis pilaris, it looks EXACTLY like the pics I've found of pityriasis folliculorum, EXACTLY. There's also tingling and mild itching. Also checked my lashes and on the left eye there were a couple spots of skin at the base of the lash.

    I'm in absolute shock and horror, i've had this issue for 8 years now with no idea what was going on. I tried getting help for a year or so, but derms kept just throwing meds at me that did nothing and seemed clueless. Eventually I gave up trying to get help because i was going no where and losing money that I didn't have and realized I probably will just have to live like this. So I did for the next 7 years. Kinda funny I ended up back here after my last post years ago. I saw a new rosacea cream mentioned on another forum and was curious about it, because even though I don't think what I have is really rosacea, the derms that did treat me tried out rosacea meds with very mild success from metrogel. So I thought to look into Soolantra and did a search here out of curiousity.

    I found the posts by MissM and Elmo, their experiences are 100% the same as mine. Weird flakes that seemed to come out of nowhere that would not go away and persistent sandpaper textured skin. I'm not sure how this infestation happened, but when I first had issues I was living in a house with mold that caused facial swelling, flushing and a weak immune system. I decided to quit washing my face with soap and only using water, thinking that would cure the flushing. Instead of moisturizers, I used oils like emu or vaseline. Basically I was creating the perfect environment for demodex to thrive (hot flushing skin, no cleansers and only using water over face, slathering my skin in oils, and a weakened immune system from mold).


    I really don't know the point of posting all this, I guess it's theraputic? My anxiety is through the roof since i've read about this. Why didn't any of the derms recognize what was going on, why would they have not taken a skin sample to look under a microscope? Do derms not recognize this infestation because it's rare? If I make an appointment, will they think i'm a crazy person for bringing this all up?

    If I do in fact have pityriasis folliculorum, how do I make sure it's completely eradicated? Sounds like the soolantra cream would take care of issues on the face, but if it's in lashes, scalp or ears is there a shampoo that helps or maybe an oral medication to kill everything?


    I found this info last night. check out page 25 figure A, that's what my skin looks like, although i'm a bit blotchier. I may have never been diagnosed because as you can see her skin looks normal until it's magnified
    https://pdfs.semanticscholar.org/e91...96beabab83.pdf
    Last edited by SaraL; 26 December 2018, 05:02 AM.

  • #2
    I've never heard that word (pityriasis) used for demodex before. We just call it demodectic rosacea. I was diagnosed (after 5 years) with demodex in August and have been treating it very successfully since. I used tea tree oil to kill them and now I've been on metronidazole to reduce the residual redness. I am also on a seboregulator for my preexisting seborrheic dermatits which has completely gone into remission. Demodectic rosacea is the best kind of rosacea because it's the most treatable, I think. I'd be happy if that's what you have. I'm glad it's the one I have.

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    • #3
      Originally posted by SaraL View Post
      If I do in fact have pityriasis folliculorum, how do I make sure it's completely eradicated? Sounds like the soolantra cream would take care of issues on the face, but if it's in lashes, scalp or ears is there a shampoo that helps or maybe an oral medication to kill everything?
      If we're talking about the same disease (demodex brevis), you can't completely eradicate it. It's a microorganism that lives on human skin under normal conditions. The goal isn't complete eradication, it's to reduce the population to a level that you can tolerate. 80% of people live with a demodex population. Even if you take oral ivermectin (that's the oral antiparasitic you're asking about) yes, that will kill them, but they will eventually come back, and you don't want to be taking an oral antiparasitic in perpetuity. Soolantra, the topical you mention, is a topical preparation of ivermectin. It too will reduce the population as long as it's used but probably won't completely eradicate them and they will come back if you stop (though probably not as high a population as before, assuming you adopt good skincare and protect yourself in other ways like diet, immune system, etc). But ultimately, you are probably allergic to the demodex, which is why you are having this problem. You can't completely eliminate the allergen but you can reduce the burden on your immune system by making your skin a hostile environment to the mites so they can't support such a large population.

      As far as if you're concerned that you have demodex folliculorum in your eyelashes, an ophthalmologist can tell you if you do, that's what happened in my case, but unless you have blepharitis they might not want to treat that. Oral ivermectin will nail those too I'm sure. As far as scalp, I suppose you could use a tea tree shampoo (I use one by Dr Organics but you could also just put a couple drops of tea tree essential oil into whatever shampoo you like, I guess) and see if that helps. As for ears, I have no idea.

      Where I live the only oral ivermectin that is sold is the veterinary one so I haven't personally taken that step, but I've been pretty satisfied overall with managing my condition with good skincare in the wake of a tea tree oil demodex die-off and metrogel for the redness. It is effective but it takes many months to see a significant reduction in redness. I can tell you at least that within 2-3 months of my demodex die-off, my skin texture (as opposed to color) was the best it's been since I was 8 years old. The color is something I'm still working on.

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      • #4
        Hi Dryad,

        This is a different issue altogether. It's a build up of scaly skin caused by a massive demodex infestation of hair follicles, another member mentioned her experience here

        https://rosaceagroup.org/The_Rosacea...due-to-Demodex


        Page 25 here is very interesting. Figure 6 A is what I believe i'm experiencing.
        https://pdfs.semanticscholar.org/e91...96beabab83.pdf

        Here's a basic explanation of demodex folliculorum also called pityriasis folliculorum
        https://www.dermnetnz.org/topics/demodex/

        Comment


        • #5
          Originally posted by SaraL View Post
          Hi Dryad,

          This is a different issue altogether. It's a build up of scaly skin caused by a massive demodex infestation of hair follicles, another member mentioned her experience here

          https://rosaceagroup.org/The_Rosacea...due-to-Demodex


          Page 25 here is very interesting. Figure 6 A is what I believe i'm experiencing.
          https://pdfs.semanticscholar.org/e91...96beabab83.pdf

          Here's a basic explanation of demodex folliculorum also called pityriasis folliculorum
          https://www.dermnetnz.org/topics/demodex/
          It's not really different, I have what MissM had. It's just that most dermatologists don't break it down that far. They just tell us "it's caused by demodex" and they don't specify more than that. In my case I don't know which variation of demodectic disease I had/have, just that demodex is the reason behind it. Whether that's because I have too much of an immune response or not enough is unknown (at least to me). However I was diagnosed with an infestation of demodex folliculorum by an ophthalmologist for the first time in 2015. I usually call what I have d. brevis but it's a combination of d. brevis and d. folliculorum. I think this is the case for everyone with demodicosis.

          Comment


          • #6
            Here are some more articles of interest to this topic: British Journal of Dermatology-Human Demodicosis - Revisit and a Proposed Classification-2014.pdf
            6-Forton-epidemiology JAAD 2005 for research gate.pdf
            Ayers-Demodex article 1963-ref to frosted skin-ptpmcrender.fcgi.pdf
            Ayres-Etxra-facial Rosacea is rare but does exist-letter-1963.pdf

            Dr. Forton has what appears to be the prevailing, current opinion of European doctors, but Dr. Samuel Ayres, Jr., an American, has been writing about this since 1930 -- I believe he invented the term pityriasis folliculorum. Please note that he attributes this condition to a build up on the surface of the skin due to a lack of ordinary daily cleaning with soap and water, plus of course a unique predisposition to the condition.

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            • #7
              Thanks for the links Tom. Dryad, you're right I think we are talking about the same issue but just that everyone's system reacts differently to the high levels of mites, which is why some have rosacea, periodontal dermatitis, and some people don't even have an inflammatory response. I'm sorry, I think I misunderstood you.

              So I guess my question now is does the average dermatologist test for and treat this issue? I have an open minded GP, I may just end up discussing this with him and see if he would be willing to do a skin scraping sample or biopsy if possible

              Comment


              • #8
                "Pityriasis folliculorum [PF] is an often over-looked clinical entity” and cases are ‘mostly female.’ Frank Powell, MD explains that there is ‘usually a history of rarely using soap or water to cleanse the facial skin but instead using cleansing creams.’ These individuals often apply moisturizers and complain of a burning or itchy sensation. He also states that the diagnosis of PF is ‘facilitated by use of dermatoscopy, which shows a distinctive picture of the presence of multiple white keratotic material consisting of keratin encrusted demodex mites protruding upwards from the follicular orifices.’ This condition ’seems to be caused by an over population of mites facilitated by the frequent use of creams and the lack of face washing with soap and water.’ source
                Brady Barrows
                Blog - Join the RRDi


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                • #9
                  Well i've read a ton and printed out material for my dr. I hope he takes me seriously. After more research I found there's an association between using elidel, protopic, steroids and demodicoidosis. Around the time this all started, I was put on all 3 medications and symptoms got worse.

                  I'm 99% sure this is what i'm dealing with, crossing my fingers that I can get treatment finally
                  Last edited by SaraL; 28 December 2018, 07:24 AM.

                  Comment


                  • #10
                    Hi Sarat, the primary problem with employing skin scraping or biopsy is that everyone has a resident population of demodex, so a doctor can easily brush it off, because of course, he would find demodex. (Dr. Forton's article states that 100% of his subjects were found to have demodex.)

                    And, there is no test for the allergic reaction (cascade of signs and symptoms) that result in demodicosis. So we are left with observation and logical inferences.

                    However, docs don't like to say or imply, "try this and see what happens," but under the circumstances treating a likely allergy to demodex involves a topical arachnicide (miticide) like Soolantra, which is in fact the only logical approach. Plus of course, daily showering with mild surfactants, rinsing completely, and then applying a non-occlusive lotion to minimize TEWL.

                    Comment


                    • #11
                      Originally posted by Tom Busby View Post
                      Hi Sarat, the primary problem with employing skin scraping or biopsy is that everyone has a resident population of demodex, so a doctor can easily brush it off, because of course, he would find demodex. (Dr. Forton's article states that 100% of his subjects were found to have demodex.)

                      And, there is no test for the allergic reaction (cascade of signs and symptoms) that result in demodicosis. So we are left with observation and logical inferences.

                      However, docs don't like to say or imply, "try this and see what happens," but under the circumstances treating a likely allergy to demodex involves a topical arachnicide (miticide) like Soolantra, which is in fact the only logical approach. Plus of course, daily showering with mild surfactants, rinsing completely, and then applying a non-occlusive lotion to minimize TEWL.
                      There is a video here on the science of testing for demodex mites in rosacea from Professor Frank Powell's research:

                      https://www.youtube.com/watch?v=WnnbwHWSHTQ

                      As the video implies, there is a greater interest in demodex mite caused rosacea in Ireland and some European countries, more scepticism in the US, and virtually no interest in the UK in this amongst dermatologists.

                      What mild surfactants and non-occlusive lotion would you suggest?
                      Last edited by antwantsclear; 29 December 2018, 10:26 AM.

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                      • #12
                        that video is disgusting and fascinating at the same time lol. I talked to my Dr today about all my skin issues and demodex mites, he really didn't know much but read what I brought him and was texting his friend who's a dermatologist about pityriasis folliculorum. The dermatologist talked about doing a skin biopsy and to rule out morgelloan's. Kind of annoyed that morgelloan's was brought up by the derm, but thankfully my Dr went ahead and prescribed the Soolantra.

                        One thing that could be an issue though, is if this helps my Dr doesn't want to refill the prescription. I can understand where he's coming from, he's not a derm and said he rarely deals with skin issues so I get his hesitation. i'm assuming i'll know whether or not it's working before finishing the full 45mg tube anyways

                        Comment


                        • #13
                          Originally posted by SaraL View Post
                          that video is disgusting and fascinating at the same time lol. I talked to my Dr today about all my skin issues and demodex mites, he really didn't know much but read what I brought him and was texting his friend who's a dermatologist about pityriasis folliculorum. The dermatologist talked about doing a skin biopsy and to rule out morgelloan's. Kind of annoyed that morgelloan's was brought up by the derm, but thankfully my Dr went ahead and prescribed the Soolantra.

                          One thing that could be an issue though, is if this helps my Dr doesn't want to refill the prescription. I can understand where he's coming from, he's not a derm and said he rarely deals with skin issues so I get his hesitation. i'm assuming i'll know whether or not it's working before finishing the full 45mg tube anyways
                          There was a period about ten years or so ago that demodex mites were not taken seriously when rosacea was discussed (does anyone remember Dr. Linda Sy?#). This goes back a very long time ago (over a hundred years actually*), but now that Soolantra has become the gold standard of rosacea treatment, along with Oracea, most dermatologists are now treating for demodectic rosacea first to rule out the mites. Of course, not all cases of rosacea are demodectic, so it is simply one of the many treatments in the armamentarium used. At least now demodectic rosacea is accepted by those who are professionals in dermatology. As you know not all physicians are keeping up with the latest information out there for not only rosacea, but for all the diseases, since it is difficult to keep up with everything and that is why physicians specialize into narrow practices. Glad your physician gave you the Rx for Soolantra. You should know within 30 days whether it works or not for you.

                          #Dr. Linda Sy said in 2000, “I personally believe demodex mites are incidental parasites that prey on compromised skin causing secondary symptoms, not unlike bacteria & fungi. They are not the primary cause of rosacea. Therefore, I suspect that not all rosaceans have demodex as a relevant factor.” She also points out in the same post that “Demodex folliculorum has been mentioned as an aggravating factor to rosaceans for many decades and yet, I have not seen any formal double blind study done on this front. (This supports the wisdom of independent research funding by rosaceans). As you have presented, articles have been published, reporting individuals (a number of whom are immunocompromised) who responded to rx of demodex .” See end note 64 for more examples like this.

                          *"From these and other statements it is seen that in suggesting the thought that these minute forms of life are etiological factors in even some of the phases of acneform diseases, I shall be but little in accord with the highest authorities. In antagonism to these views, I may say that the results of my observations appear to indicate a close relationship of the parasites with the diseased condition."
                          Demodex Folliculorum in Diseased Conditions of the Human Face
                          Proceedings of the American Society of Microscopists, Vol. 8, 1886, page 123, Published by: Wiley-Blackwell
                          Last edited by Brady Barrows; 30 December 2018, 08:28 AM.
                          Brady Barrows
                          Blog - Join the RRDi


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                          • #14
                            Originally posted by Brady Barrows View Post
                            There was a period about ten years or so ago that demodex mites were not taken seriously when rosacea was discussed
                            I remember it well Brady, even slightly more recently than 10 years ago I'd suggest. I recall clearly how even mentioning demodex in an online post would quickly bring multiple howls of derision. I'm glad things have moved on...

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                            • #15
                              I seem to have these small white "spikes" all over my face. Including my forehead and eyebrows. Can I put soolantra on these areas of the face? I will be seeing my dermatologist this upcoming week. I am afraid that he may but out of touch. But I'm going to try to reason with him. Of course in a respectful manner.
                              Also can anyone give me some ideas on cleansers to use? I haven't washed my face in a long time. I've only been using water. Which has clearly exacerbated the issue. I'm afraid of using the wrong soap or cleanser. Any advice would be greatly appreciated.
                              One more thing. Is it important to cleanse the skin before applying soolantra? Or does that even matter?

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