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  • #16
    Im also trying low dose accutane now reduced from 5mg every other day to 3,33mg. Now its a 7th week going.
    First 4 weeks were great, you could see by your eyes how the redness is fading from your face ;]
    The 5th week was a major crush moment, for a whole week my redness was counterattacking. My face was looking bad and I was feeling bad. That was the moment when I changed the dose.
    The 6th week was alright and now im at the 7th and it still looks good. Not a major breakthrough but its calm, doesnt flush, just a pink skin without hot redness.

    Some insights I may have.
    My ears are getting more red now I think, unless I imagine thinks, especially after the shower. Didn't notice them as much previosly. But it may be because I was focus more on face.
    Ma hands used to be cold even at the normal or warm temperatures and now it happens more often.
    And I have had all other side effects, dry skin T-shaped on face, nose, lips, forehead, dry eyes. But that is easy to fix.

    Hope you will find your way with Isotretynoin also succesfull.

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    • #17
      Originally posted by RedMage View Post
      Im also trying low dose accutane now reduced from 5mg every other day to 3,33mg. Now its a 7th week going.
      First 4 weeks were great, you could see by your eyes how the redness is fading from your face ;]
      The 5th week was a major crush moment, for a whole week my redness was counterattacking. My face was looking bad and I was feeling bad. That was the moment when I changed the dose.
      The 6th week was alright and now im at the 7th and it still looks good. Not a major breakthrough but its calm, doesnt flush, just a pink skin without hot redness.

      Some insights I may have.
      My ears are getting more red now I think, unless I imagine thinks, especially after the shower. Didn't notice them as much previosly. But it may be because I was focus more on face.
      Ma hands used to be cold even at the normal or warm temperatures and now it happens more often.
      And I have had all other side effects, dry skin T-shaped on face, nose, lips, forehead, dry eyes. But that is easy to fix.

      Hope you will find your way with Isotretynoin also succesfull.
      One of my docs said at the 5th week or so, there is a spike in inflammation from the accutane.

      Pls keep us posted. Are you taking 3.33 mg every other day?

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      • #18
        i tried accutane for 2 wks. a few days of 5 mg / day, a few days of 10 mg / day and a few days of 20 mg / day. I have severe flushing and solid edema and neurogenic rosacea. I was also on 500 mg BID flagyl at the time - which to me helps the flushing (anxiety, night) but not the edema or sensitivity. Was told accutane is the best treatment for solid edema (Morbihans - when it is the main feature of rosacea ... since I have other features, docs go back/forth on giving me this diagnosis).

        Anyway, each of my family members noticed a positive difference with accutane. I could walk down the hall and not feel the air like frostbite on my cheeks. Skin wasn't as red. Skin texture improved. There was a day of extreme itchiness where I'm guessing it was purging all the dead skin cells from my face. For the first couple doses after a dose increase, I think i had hotter ears for an hour - nothing major. It's possible that the flagyl I was on simultaneously was blocking any accutane-induced flushing. (I've been on flagyl before and know what it can and can't do)

        Docs disagreed about target dose - one wanted a slow titration 10-30 mg / wk and the other wanted at least 20 mg / day to start with. Likely patient dependent and depended on my edema, not sure. Both said if I can tolerate it, target dose of 1 mg / day which is 40-60 mg / day for me.

        I stopped, due to a rare side effect that docs aren't sure came from the accutane or not. (More- they don't think it's accutane-related, but I am not sure..) (Intense pressure in my skull.) After I get cleared by a neuro I think plan is to do a slower titration. Out of dozens and dozens of meds, I can see a solution working with full dose rosacea antibiotics (either 1-2) paired with an accutane course. I am a severe case, and for a while was bedbound from the rosacea (frostbite or burning sensations from the air). From what I understand from my longtime derm, the interstitial fluid is just stuck on my face, with nowhere to go but sensitizing the nerves. If the lymphatics can work better, there will be less inflammation, less nerve sensitivity, less flushing, less edema.

        Best

        Another note - from what I read in literature, seems like accutane can work better for solid facial edema with an antihistamine (like ketotifen).
        Last edited by laser_cat; 21 January 2021, 08:21 PM.

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        • #19
          Originally posted by laser_cat View Post
          i tried accutane for 2 wks. a few days of 5 mg / day, a few days of 10 mg / day and a few days of 20 mg / day. I have severe flushing and solid edema and neurogenic rosacea. I was also on 500 mg BID flagyl at the time - which to me helps the flushing (anxiety, night) but not the edema or sensitivity. Was told accutane is the best treatment for solid edema (Morbihans - when it is the main feature of rosacea ... since I have other features, docs go back/forth on giving me this diagnosis).

          Anyway, each of my family members noticed a positive difference with accutane. I could walk down the hall and not feel the air like frostbite on my cheeks. Skin wasn't as red. Skin texture improved. There was a day of extreme itchiness where I'm guessing it was purging all the dead skin cells from my face. For the first couple doses after a dose increase, I think i had hotter ears for an hour - nothing major. It's possible that the flagyl I was on simultaneously was blocking any accutane-induced flushing. (I've been on flagyl before and know what it can and can't do)

          Docs disagreed about target dose - one wanted a slow titration 10-30 mg / wk and the other wanted at least 20 mg / day to start with. Likely patient dependent and depended on my edema, not sure. Both said if I can tolerate it, target dose of 1 mg / day which is 40-60 mg / day for me.

          I stopped, due to a rare side effect that docs aren't sure came from the accutane or not. (More- they don't think it's accutane-related, but I am not sure..) (Intense pressure in my skull.) After I get cleared by a neuro I think plan is to do a slower titration. Out of dozens and dozens of meds, I can see a solution working with full dose rosacea antibiotics (either 1-2) paired with an accutane course. I am a severe case, and for a while was bedbound from the rosacea (frostbite or burning sensations from the air). From what I understand from my longtime derm, the interstitial fluid is just stuck on my face, with nowhere to go but sensitizing the nerves. If the lymphatics can work better, there will be less inflammation, less nerve sensitivity, less flushing, less edema.

          Best

          Another note - from what I read in literature, seems like accutane can work better for solid facial edema with an antihistamine (like ketotifen).
          Thank you for the update! I hope that the side effect gets cleared and that the Accutane helps you. It worked great for me when I was younger- I took it when I was about 19 (over a decade ago) for some moderate, but persistent acne. I think I can remember it lessening the general inflammation in my face and it was like my face sort of slimmed down, in addition to working on the actual acne breakouts. I do plan on trying it again at a low-dose for my flushing and edema issues. Like you mentioned, the edema seems to cause the flushing and vice versa- hoping there's something that can break that cycle.

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          • #20
            Originally posted by Jamoverton View Post
            Thank you for the update! I hope that the side effect gets cleared and that the Accutane helps you. It worked great for me when I was younger- I took it when I was about 19 (over a decade ago) for some moderate, but persistent acne. I think I can remember it lessening the general inflammation in my face and it was like my face sort of slimmed down, in addition to working on the actual acne breakouts. I do plan on trying it again at a low-dose for my flushing and edema issues. Like you mentioned, the edema seems to cause the flushing and vice versa- hoping there's something that can break that cycle.
            Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.

            Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
            At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.

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            • #21
              Originally posted by laser_cat View Post
              Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.

              Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
              At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.
              Lol! Too funny, my family has become extra attuned to how I handle different temps as well, haha.

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              • #22
                Originally posted by laser_cat View Post
                Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.
                Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
                At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.
                Hope you are ok laser_cat.
                Brady Barrows
                Blog - Join the RRDi


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                • #23
                  Originally posted by Brady Barrows View Post
                  Hope you are ok laser_cat.
                  Thank you Brady - yes head pressure is fine now. 3 docs now think unrelated to accutane. I won't go into the details but will say that. We are going to retry accutane. I really thought it was going to make me flush, but it didn't.

                  I had an interesting experience where I was on 1000 mg flagyl for a while, and I took high dose benadryl (a yr ago?). After enough benadryl, it felt like water balloons in my cheeks collapsed, I was totally temp tolerant, fluid gushed out of my eyes and nose like those gates had been blocked with inflammation, and the skin could "glide easier" along my bones and I couldn't stop smiling because I could. My neck was slimmer and more flexible. Inner nose burning resolved and eye burning resolved. It didn't last, but it made me think that getting rid of the edema could be the way to go, for everything else.

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                  • #24
                    Originally posted by laser_cat View Post
                    Thank you Brady - yes head pressure is fine now. 3 docs now think unrelated to accutane. I won't go into the details but will say that. We are going to retry accutane. I really thought it was going to make me flush, but it didn't.

                    I had an interesting experience where I was on 1000 mg flagyl for a while, and I took high dose benadryl (a yr ago?). After enough benadryl, it felt like water balloons in my cheeks collapsed, I was totally temp tolerant, fluid gushed out of my eyes and nose like those gates had been blocked with inflammation, and the skin could "glide easier" along my bones and I couldn't stop smiling because I could. My neck was slimmer and more flexible. Inner nose burning resolved and eye burning resolved. It didn't last, but it made me think that getting rid of the edema could be the way to go, for everything else.
                    That is amazing. Your benadryl experience ties in with what an intelligent GP said to me a few weeks ago-the edema is from an immune system reaction. I am on a trial of Montelukast and if that doesn?t work, we?re going to try a strong anti-histamine. She is convinced this is the way to go for the edema and it makes sense to me. I?ll keep you all updated. I find GPs are so supportive and really analyse and treat symptoms-dermatologists haven?t a clue what to do and just try and sound intelligent but do nothing to help.

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                    • #25
                      Originally posted by Momof View Post
                      That is amazing. Your benadryl experience ties in with what an intelligent GP said to me a few weeks ago-the edema is from an immune system reaction. I am on a trial of Montelukast and if that doesn?t work, we?re going to try a strong anti-histamine. She is convinced this is the way to go for the edema and it makes sense to me. I?ll keep you all updated. I find GPs are so supportive and really analyse and treat symptoms-dermatologists haven?t a clue what to do and just try and sound intelligent but do nothing to help.
                      That's interesting. I hear of Montelukast helping.

                      For the solid edema - I hear of antibiotics, accutane (accutane being best), and antihistamines helping. I hope to find some combination of these. I actually think other drugs - like klonopin, cymbalta, etc - only help by weakly targeting that innate immune system. (decreasing cytokines indirectly).

                      I recently asked a derm why he never bothered to target the (insane) blood flow for me, and he said it's not pathological in his eyes. He said, "if you biopsy red, you will see inflammation".

                      Yeah with the benadryl - though it was bittersweet experience (not sure why i didn't just keep taking it ... i was worried it wasn't sustainable and rebounding or something .... ) it really made me think, wow, this all could melt away for a near 100% recovery. It's not that the blood vessels are overreactive or bla bla. Honestly it almost seemed like the lymph nodes got kicked into gear (neck CT scan shows I have mildly large lymph nodes) and could clear out the infllammation .... idk. I kept stretching my upper back and neck because the inflammation was gone there, as well.

                      Anyway, good luck. Hopefully each of us get improved quality of life. <3 somehow!

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                      • #26
                        PS - as for your GP - I now think university hospital derms or derms with national reputations bla bla can overthink things. I went to a derm at my local health clinic (patient told me he was very good) and he looked at my pictures and face and said - the intensity of the flushing feels like an inflammatory reaction to me. Hospital derms were trying so hard to control the blood vessels / nerves bla bla and and he just kind of used common sense. "No, you can't rein that in with a beta blocker." Ahhhhh breath of fresh air...
                        I'm glad you have a good relationship with your GP, momof!
                        Last edited by laser_cat; 24 January 2021, 06:17 PM.

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                        • #27
                          .https://www.semanticscholar.org/pape...d72b2/figure/0

                          seems like there is a retinoid receptor that is associated with the vit D receptor, according to this. So I could see how accutane could make things worse maybe just like vit D can in creating bad cathelicidins. But accutane should block TLR2 in the other pathway and have anti-inflammatory effects. Anyway just a thought on how/why accutane might be a balance. I don't think it causes flushing by drying out skin - it seems to be a switch in some people for rosacea pathology itself. (It's interesting that accutane induced rosacea can react badly to vit D like ... "regular rosacea"?)
                          Last edited by laser_cat; 11 February 2021, 05:26 PM.

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                          • #28
                            Not to hijack this thread when I'm not the OP -

                            quick update -

                            I cannot tolerate any accutane without other anti-inflammatories like flagyl in the background. I've been on/off flagyl enough to know what it can do, did various titrations of accutane by itself, and flagyl and accutane together. So for accutane by itself, I cannot tolerate 2.5 mg. On flagyl simultaneously for a few weeks prior, I could tolerate 20 mg accutane / day (which is about 0.5 mg / kg for me, a good dose). My longtime doc was surprised that I could tolerate that high dose of accutane being one of the most severe flushers I imagine, that he has seen. So I'm back on flagyl - which I'll be on for life although i'm told it might work less effectively over time - and then maybe try to add back in slow titration accutane when I feel i have enough stability or request ketotifen compounded (mast cell stabilizer used in europe for solid facial edema add-on to accutane) before accutane. If I need more stability, dapsone was recommended - targeting the neutrophils that flagyl also sort of targets - evidence of dapsone for rosacea. Thalidomide was also suggested next at that point as another non antibiotic way to target the innate immune system - but only evidence that it helps rosacea in rats (as far as I know).

                            Accutane by itself- felt like tape being ripped off my face. I was told it can increase cell turnover and sensitize that top layer of skin. Even though I was coating myself in vaseline product all the time. So I can sympathize with how it can help some people, and make others worse.


                            I'm really surprised the OP was able to reset with such a small amount of accutane. I imagine someone would have to manage to do a full course to have lasting effect. Anything else, I'd think symptoms would immediately come back and low dose accutane would have to be for life. So that's really interesting to me. So much we don't know, and so much that might be patient-dependent.

                            edit- It felt like 10 mg accutane / 45 kg person - (I do not recommend this dose for flushers!!) felt like someone poured acid on my nerves, like the nerves thermoTRP receptors were directly activated. (In addition to sensitizing top layer of skin..). I don't know, it's interesting, to think of the "badness" it could do to rosaceans. I got a glimpse I believe on how it could trigger NR, a small glimpse anyway: the mysterious, cruel, and painful result it can have.
                            Last edited by laser_cat; 26 February 2021, 06:58 PM.

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                            • #29
                              Originally posted by laser_cat View Post
                              Not to hijack this thread when I'm not the OP -

                              quick update -

                              I cannot tolerate any accutane without other anti-inflammatories like flagyl in the background. I've been on/off flagyl enough to know what it can do, did various titrations of accutane by itself, and flagyl and accutane together. So for accutane by itself, I cannot tolerate 2.5 mg. On flagyl simultaneously for a few weeks prior, I could tolerate 20 mg accutane / day (which is about 0.5 mg / kg for me, a good dose). My longtime doc was surprised that I could tolerate that high dose of accutane being one of the most severe flushers I imagine, that he has seen. So I'm back on flagyl - which I'll be on for life although i'm told it might work less effectively over time - and then maybe try to add back in slow titration accutane when I feel i have enough stability or request ketotifen compounded (mast cell stabilizer used in europe for solid facial edema add-on to accutane) before accutane. If I need more stability, dapsone was recommended - targeting the neutrophils that flagyl also sort of targets - evidence of dapsone for rosacea. Thalidomide was also suggested next at that point as another non antibiotic way to target the innate immune system - but only evidence that it helps rosacea in rats (as far as I know).

                              Accutane by itself- felt like tape being ripped off my face. I was told it can increase cell turnover and sensitize that top layer of skin. Even though I was coating myself in vaseline product all the time. So I can sympathize with how it can help some people, and make others worse.


                              I'm really surprised the OP was able to reset with such a small amount of accutane. I imagine someone would have to manage to do a full course to have lasting effect. Anything else, I'd think symptoms would immediately come back and low dose accutane would have to be for life. So that's really interesting to me. So much we don't know, and so much that might be patient-dependent.

                              edit- It felt like 10 mg accutane / 45 kg person - (I do not recommend this dose for flushers!!) felt like someone poured acid on my nerves, like the nerves thermoTRP receptors were directly activated. (In addition to sensitizing top layer of skin..). I don't know, it's interesting, to think of the "badness" it could do to rosaceans. I got a glimpse I believe on how it could trigger NR, a small glimpse anyway: the mysterious, cruel, and painful result it can have.
                              I'm sorry it didn't work out for you without the anti-inflammatories. Perhaps you can revisit it once you're stable on flagyl. Interesting that it works synergistically and you can almost by-pass the nerve irritation side effect by taking it with flagyl.

                              I think I'm getting something similar to that ripped tape feeling when I take 5 mg- I seem to be getting nerve spasms and that feeling of raw exposed skin on my left cheek (which has always been more sensitive) about 6-8 hours after my dose. I also get a bad flush in the afternoon the day after my dose and it triggers some ear flushing.

                              However I think I'm able to tolerate 2.5mgs so far. Ugh my skin must have changed so much in the last 2 years, I used to be able to tolerate 20mgs a day before.

                              I've been taking 2.5mgs 4 times a week. This week I'm going to try taking it every day. My skin has suddenly got even more oily so I'm assuming it's pushing out all the sebum and hopefully will settle down over the next few weeks.

                              On this dose it seems to be helping some of the redness on my face. I notice after showering my cheeks tend to go really red and stay red for hours however now they seem to recuperate faster. Bizarrely my skin feels a bit stronger, less reactive.

                              My nose flushing is still happening every night but it's only going on for an hour as opposed to 3 hours and I'm not getting as much swelling on my cheekbones.

                              I'm really surprised too that the OP could get such good results from Accutane on such a low dose and for such a short amount of time. I know that for me, if this works, I'm probably going to have to convince my derm to prescribe it to me for the rest of my life.

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                              • #30
                                Originally posted by patrick33 View Post
                                I started Accutane in December 2019 after exhausting all other treatments(antibiotics, topicals etc) over the last 7 years. My Doctor suggested low dose accutane at 5mg a day but even this dose caused my flushing to increase slightly. After a two week delay to get generic 2.5mg tablets, I started a dose of 2.5mg a day for the first month followed by 2.5mg every other day for the following three months. Finished the course at the start of May and my flushing is completely gone (been 4 months clear now). Only side effect I had was slightly dry lips, my doctor didn't even take blood test checks because he said the dose was too low. I began to get better after around 3 weeks in and the swelling took around 6 weeks. My Rosacea started in 2013 with extreme bouts of flushing and swelling, cheeks and nose mainly. Main triggers were food and bending/laying down. Never had any papules/pustules or acne.

                                It feels strange now being over it, almost like what was all the fuss about. I understand now why people without rosacea view it as trivial. Of course when you have it, it's like the end of the world and I'll never forget that.
                                Also this isn't remission, I had previously flushed every day for 7 years, now it's just gone. Since May I have had warm showers, helped my brother painting his house out in the summer sun for 7 hours. I'm eating ice cream and drinking cola (liquid sugar) with no flushing. Also put on around 14 pounds of weight and my skin is not flushing, like a normal person.

                                The only thing I don't understand is how this has worked, I've been looking at lots of research about ultra low dose Isotretinoin and, the only thing I have come up with is that at low dose it can normalize the immune response of exaggerated toll like receptors (tlr2).
                                This is just wonderful, I remember Prof Chu said sometimes Rosacea can just burn itself out. I guess when the skin barrier is repaired. I?m happy for you.

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