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  • #16
    Originally posted by Rainykite View Post
    I want to thank everyone for replying to this post! God knows we need each other. It truly helped me reading everyone's post. I have had some very dark days but have been learning to accept this condition even though I still am trying to figure it out at the same time still! One day at a time... Life is very unpredictable! I will hold onto every good moment and keep holding onto hope. It's kind of interesting... A few days after I posted, I was very down and then I met a beautiful dog who was living on the streets and she would not let anybody near her. Well I am happy to say she lives with us now and she is the sweetest soul, I feel that she has also had a rough life and it was a quick reminder that we all need help in this life. Here is a picture of her.
    Peace & love. [ATTACH=CONFIG]4297[/ATTACH]
    I looked back and think I found your post with these questions:

    My questions -
    1. Has anybody had side effects from using Protopic? Is it possible this side effect will be permanent? Or that the drug was so potent when absorbed (obviously it was) that the side effects started to occur to other areas of the face?
    Are you using Tacrolimus now (oral or topical) and for what?
    2. I have read about Demodex living in hair follicles and that they will spread rapidly to other areas of the face especially if the skin is dry. The doctor and dermatologist do not know what i am talking about and therefore i have not been tested. I am heavily wondering about this even though i do not have any bumps.
    You can learn a great deal about Demodectic Rosacea if you take an hour or so to read.
    3. Does Seborrheic Dermatitis ever occur on the cheek bones for anybody?? (I saw Iluvjesse444 videos on youtube and she shows her Seborrheic Dermatitis being present on her cheekbones) Can Seborrheic Dermatitis occur anywhere on the face for others?
    Yes, on the cheek bones, facial area, forehead, scalp and torso. You can learn more here.
    4. Nobody has diagnosed me with Rosacea yet but would Rosacea just occur this rapidly and aggressively in 5 days from not using moisturizer or cleanser?!? I have read that Rosacea usually starts showing slow signs before it gets to this point which i had absolutely none.
    Haven't heard of rosacea occurring that rapid due to NOT using a moisturizer or cleanser. What is rosacea? What are you diagnosed with, SD?
    Last edited by Brady Barrows; 13 September 2016, 07:27 AM.
    Brady Barrows
    Blog - Join the RRDi


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    • #17
      Hi Brady,

      I formed SD in my brow area from using topical coconut oil. I was given topical Protopic for the SD in the brow area. The first day that I applied Protopic, it caused local redness and induced flushing in my eyelid area with heat or emotions. 2 months later I stopped using Protopic and my eyes/brow area were very swollen from discontinuing use. The doctor misdiagnosed me with periorbital dermatitis and told me to only wash my face with water for a week even though the rest of my face was completely fine. After 5 days of only using water the SD spread to other areas of my face and questionably rosacea formed during this as well. I have been diagnosed with SD/Rosacea. I am managing the SD very well which is located mostly on my forehead now... The rosacea I've been learning about... I get flushing frequently on cheeks and my nose now and have been learning food/weather triggers. I believe it's demodex considering what happened within 5 days of only using water. I've been using permethrin which has shown steady improvement so far but not complete. The dermatologist gave me doxycycline and metro and sent me out the door. I refuse to take these because of all the research I've done and my horrible experience with Protopic I'm very weary now of medication. I was referred to a new dermatologist 2 months ago but have not heard from the office yet. Thanks!

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      • #18
        The squeaky wheel gets the grease. Try calling the new derm's office and ask if there are any cancelations that you might get in and explain how urgent this is. You will be surprised at how you can get in to see the new derm if you squeak loud enough. Explain what you have done to the dermatologist and why you are not so keen on meds. However you may want to ask him about Soolantra. Also might want to read this post about speaking to the doc.
        Brady Barrows
        Blog - Join the RRDi


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        • #19
          Apparently the office has been busy updating their data analysis and did not get my referrals. I can get in as early as tomorrow, fingers crossed this dermatologist is familiar with demodex. Canada does not carry Soolantra... I think it is called Rosiver here but I'm not sure if all practices carry this product. Thanks.

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          • #20
            Derms in Canada are well informed about demodex, as I have been told, and Rosiver is commonly prescribed.

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            • #21
              I remember very well when all started. I felt so depressed ans sad, i always thought that all the people are judging me and that I'm the only one with this condition, i really don't remember how i passed over this, maybe this is because i just decided to accept the thing the way it is and that's all...

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              • #22
                Sometimes I don't even feel like I can relate to anyone, as if I'm less of a human for having these conditions (I believe I have facial SD and rosacea). All the things I used to do I no longer do, or even attempt to do because I know I'll look worse for doing them. It just zaps so much energy from you from always being concerned about it that I just don't care anymore... nothing works so why waste the time or money.

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                • #23
                  Originally posted by aafdup View Post
                  Sometimes I don't even feel like I can relate to anyone, as if I'm less of a human for having these conditions (I believe I have facial SD and rosacea). All the things I used to do I no longer do, or even attempt to do because I know I'll look worse for doing them. It just zaps so much energy from you from always being concerned about it that I just don't care anymore... nothing works so why waste the time or money.
                  the exact same feeling I have... it feels like I'm not like the rest and that's why I don't even have to make myself "seen". and i also think the same when nothing works so why waste the time and money... but I see here people saying that they do get some help and their posts make me wanna fight more!

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                  • #24
                    Originally posted by MariaSt View Post
                    Derms in Canada are well informed about demodex, as I have been told, and Rosiver is commonly prescribed.
                    Hi MariaSt! I had my appt today with a new derm (fifth one) and he is the only one who has been familiar with demodex however he told me that demodex is only possible with patients who have sub type 2 rosacea. I have a hard time believing this because I have seen others post on blogs/websites with redness or flushing who have overcome Demodex? Anybody else know more about this? He gave me 2 samples of Rosiver though and also a prescription for Onreltea (mirvaso) ... just read about this prescription and it sounds like a NIGHTMARE! Staying far away from that one!

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                    • #25
                      Originally posted by Sheis4 View Post
                      the exact same feeling I have... it feels like I'm not like the rest and that's why I don't even have to make myself "seen". and i also think the same when nothing works so why waste the time and money... but I see here people saying that they do get some help and their posts make me wanna fight more!
                      I know how you both feel because I also feel like I can't relate to anyone that I know. When I spoke with one of my psychologists she told me that our condition is not normal to speak about when it comes to depression because there are other conditions that have way more awareness/support groups like abuse or eating disorders or recovering addicts, ect. Most psychologists don't even know what to say to me or how to help me because they have never dealt with the psychological aspect of skin conditions but they understand why it would make one depressed... I think there should be more awareness and help about it. Some days I just think well my life did a 180 so I don't care anymore because there is nothing I can do and we are all going to die anyways. pretty sad.

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                      • #26
                        Hi! The role of demodex in sb1 is still under investigation, but I believe that it's useful to try antidemodectic treatments, even if you don't do the skin scraping test. From what I read, there are some people with rosacea sb1, who were helped by the ivermectin cream, it just takes longer time to get rid of the redness than the papules. You are right you want to stay away from Onreltea, use only the Rosiver. Do you live in Toronto?

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                        • #27
                          No I am not in Toronto. I actually have to drive 2 1/2 hours to see derms because we only have 1 in my city and he does not have the best rep. Sometimes I get tiny bumps on my cheeks... but I do flush. I've read that using Protopic can increase demodex, while I was using Protopic I also got very sick which was odd for me. I also have problems with my eyes since this but I'm not sure if my ophthalmologist will be familiar with demodex either... will book another appt with him soon.

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                          • #28
                            Protopic's mechanism of action has the same effect as corticoids have, it blocks the immune response path, so that bacteria can thrive without being killed by our immune cells. It's just an alternative to cortisone, thus should be avoided in rosacea. I know that some derms use Protopic, but do they really know about the biochemistry behind tacrolimus?
                            As for your eyes, your eye doctor should search for demodex. Ask him for Cliradex wipes and clean your eyelids twice a day. Also use artificial tears.

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                            • #29
                              Originally posted by Rainykite View Post
                              because there is nothing I can do and we are all going to die anyways. pretty sad.
                              and yeah.. this is, in fact, what makes me change my mind and say: fu*k it... i'm going to do it. we're all going to die one day and why would they do it and i can't? it is because of the fact that I have rosacea? no thanks

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                              • #30
                                Originally posted by Sheis4 View Post
                                and yeah.. this is, in fact, what makes me change my mind and say: fu*k it... i'm going to do it. we're all going to die one day and why would they do it and i can't? it is because of the fact that I have rosacea? no thanks
                                If I am reading this correctly, you may want to consider that many in this forum who have had severe rosacea have it under control. It is possible to get rosacea under control. Yes, it is difficult but not impossible to get rosacea under control.
                                Brady Barrows
                                Blog - Join the RRDi


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