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  • New here - subtype 1 rosacea, trialling Remeron and Clonidine under Dr Chu's care

    Hi fellow rosaceans

    I have been reading this forum for a few months so I thought I would introduce myself and firstly say thank you for all the invaluable information I have found on this forum. Secondly, I would welcome your views on potential treatment options to pursue.

    My story
    I'm a 30 year old female without a typical atopic profile (very fair, porcelain skin, eczema, allergies, childhood asthma). Shortly after moving to London from Sydney in April this year to start a new job as a lawyer, I began experiencing severe facial burning and flushing. It was so severe that I couldn't sleep at all, and was in intense pain at work - it felt like someone was pouring acid all over my face. The GP I saw initially thought it was allergies/eczema and prescribed me a strong antihistamine together with a steroid cream. The antihistamines didn't really help matters and I was loath to use the steroid on my face as I was aware of the potential side-effects. Also, from the research I had done, my symptoms seemed more like rosacea than eczema. So I got myself an appointment to see Dr Chu in July and, in the meantime, convinced the GP and another dermatologist I saw to put me on Clonidine and Mirtazapine based on the research I had done on the forum and the wonderful Natalja's very helpful blog. I also started being quite careful with my diet (cutting out alcohol and trying to adopt a low carb/low sugar diet) and doing anything I could to minimise allergies (taking the antihistamine, getting dustmite covers, keeping a very clean apartment etc). Oh, and I also stay out of the sun, use mineral makeup with an SPF (Jane Iredale) and use very gentle skincare (wash my face with bottled water and use the Avene Tolerance Extreme line and thermal mist).

    I started on the Clonidine (50mcg 3 times a day) and Remeron (15mg taken just before bed) in May. These did seem to help quite a bit, and the Remeron certainly helps me sleep. So far I haven't had any side effects from these meds - I already had low blood pressure but the Clonidine didn't lower it too much more, and I haven't put on any weight from the Remeron thus far.

    However, just before seeing Dr Chu, in June, I had a very nasty outbreak where my whole face was red, burning and incredibly swollen for around a week (for which time I couldn't go to work). I was virtually unrecognisable. My mum even flew over from Australia to support me as I was very scared, unable to sleep due to the pain and having some dark thoughts. I saw Dr Chu and he diagnosed me with co-existing conditions - severe atopic dermatitis (which had become infected) and rosacea. He prescribed an antibiotic (doxy) and told me I was on the right path with the Clonidine and Remeron for the rosacea.

    I also went to an allergist/immunologist and been tested for allergies and other conditions such as mastocytosis and lupus. Tests came back negative for mastocytosis and lupus, however my Immunoglobin E levels were extremely high and allergy tests revealed very severe allergies to dustmites and moderate allergies to pollen and cat dander.

    What next?

    Unfortunately, while my symptoms have diminished due to the medication, I'm still experiencing very painful flare ups and the condition has a significant effect on my quality of life. In particular, I react very badly to heat (including hot food) and warm rooms (which is very hard to control). My flushing also seems to come on during sleep (although I try to alleviate this by sleeping with my head elevated and with light covers on). I think stress is also a trigger so I try and stay as calm as possible - that being said, I'm a very calm, chilled out person naturally and it's only since experiencing this very painful condition that I have become stressed. I have a position as a barrister to start next year and am terrified about the potential impact of the condition on my career (I can't imagine making submissions to a judge while experiencing the intense burning pain). Also, I hate the unpredictability of the condition and not being able to plan things - I've already had to cancel trips due to extreme flare ups and suffered through my horrible 30th birthday party where the heating caused my cheeks to burn intensely - I stayed out due to all the people that had come to see me but was in agony the whole time. I suspect that my co-existing skin conditions tend to flare each other up and that my skin barrier is very weak as a result.

    So, I would very much welcome any advice or suggestions on what to do next. Potential things I have thought about are:

    - continuing with the Clonidine and Mirtazapine as these do seem to be helping (in people's experience, do the effects build up over time?)
    - doing a very strict elimination/anti-inflammatory diet to really pinpoint any food triggers
    - trying RLT
    - trying other medications such as Mepacrine or Plaquenil
    - trying a beta blocker such as Propranolol
    - trying to repair my skin barrier - anyone have any advice on how to do this?
    - from the research I have done, it seems that antibiotics don't really help subtype 1 rosacea - but would it be worth trying out Oracea just to see if it helps?

    Anyone have any advice or suggestions? I am due to see Dr Chu again in late September. He is truly a fantastic doctor and pioneering in the rosacea field I believe, but in my two appointments so far (as he is so busy) the appointment goes very quickly and I haven't been able to really discuss my condition with him in depth.

    All the best,
    Madhatter

  • #2
    I should clarify that the antibiotics Dr Chu prescribed were for the infected dermatitis, not the rosacea, and were only a one week course (Doxy 100mg per day). The course cleared the infection up and my skin was very good for around 2 weeks after that.

    Comment


    • #3
      Originally posted by madhatter View Post
      I should clarify that the antibiotics Dr Chu prescribed were for the infected dermatitis, not the rosacea, and were only a one week course (Doxy 100mg per day). The course cleared the infection up and my skin was very good for around 2 weeks after that.
      Is there any chance of you putting up a photo of one side of your face . So I will know what Im dealing with here

      Because subtype 1 Rosacea [Flushing] doesn't need any medication or creams. You just need to leave your face alone and do your best to avoid your triggers

      heated rooms etc, No medication on earth will solve that one [heated room flushing] for you or anyone else .

      Comment


      • #4
        Originally posted by madhatter View Post
        Hi fellow rosaceans

        I have been reading this forum for a few months so I thought I would introduce myself and firstly say thank you for all the invaluable information I have found on this forum. Secondly, I would welcome your views on potential treatment options to pursue.

        My story
        I'm a 30 year old female without a typical atopic profile (very fair, porcelain skin, eczema, allergies, childhood asthma). Shortly after moving to London from Sydney in April this year to start a new job as a lawyer, I began experiencing severe facial burning and flushing. It was so severe that I couldn't sleep at all, and was in intense pain at work - it felt like someone was pouring acid all over my face. The GP I saw initially thought it was allergies/eczema and prescribed me a strong antihistamine together with a steroid cream. The antihistamines didn't really help matters and I was loath to use the steroid on my face as I was aware of the potential side-effects. Also, from the research I had done, my symptoms seemed more like rosacea than eczema. So I got myself an appointment to see Dr Chu in July and, in the meantime, convinced the GP and another dermatologist I saw to put me on Clonidine and Mirtazapine based on the research I had done on the forum and the wonderful Natalja's very helpful blog. I also started being quite careful with my diet (cutting out alcohol and trying to adopt a low carb/low sugar diet) and doing anything I could to minimise allergies (taking the antihistamine, getting dustmite covers, keeping a very clean apartment etc). Oh, and I also stay out of the sun, use mineral makeup with an SPF (Jane Iredale) and use very gentle skincare (wash my face with bottled water and use the Avene Tolerance Extreme line and thermal mist).

        I started on the Clonidine (50mcg 3 times a day) and Remeron (15mg taken just before bed) in May. These did seem to help quite a bit, and the Remeron certainly helps me sleep. So far I haven't had any side effects from these meds - I already had low blood pressure but the Clonidine didn't lower it too much more, and I haven't put on any weight from the Remeron thus far.

        However, just before seeing Dr Chu, in June, I had a very nasty outbreak where my whole face was red, burning and incredibly swollen for around a week (for which time I couldn't go to work). I was virtually unrecognisable. My mum even flew over from Australia to support me as I was very scared, unable to sleep due to the pain and having some dark thoughts. I saw Dr Chu and he diagnosed me with co-existing conditions - severe atopic dermatitis (which had become infected) and rosacea. He prescribed an antibiotic (doxy) and told me I was on the right path with the Clonidine and Remeron for the rosacea.

        I also went to an allergist/immunologist and been tested for allergies and other conditions such as mastocytosis and lupus. Tests came back negative for mastocytosis and lupus, however my Immunoglobin E levels were extremely high and allergy tests revealed very severe allergies to dustmites and moderate allergies to pollen and cat dander.

        What next?

        Unfortunately, while my symptoms have diminished due to the medication, I'm still experiencing very painful flare ups and the condition has a significant effect on my quality of life. In particular, I react very badly to heat (including hot food) and warm rooms (which is very hard to control). My flushing also seems to come on during sleep (although I try to alleviate this by sleeping with my head elevated and with light covers on). I think stress is also a trigger so I try and stay as calm as possible - that being said, I'm a very calm, chilled out person naturally and it's only since experiencing this very painful condition that I have become stressed. I have a position as a barrister to start next year and am terrified about the potential impact of the condition on my career (I can't imagine making submissions to a judge while experiencing the intense burning pain). Also, I hate the unpredictability of the condition and not being able to plan things - I've already had to cancel trips due to extreme flare ups and suffered through my horrible 30th birthday party where the heating caused my cheeks to burn intensely - I stayed out due to all the people that had come to see me but was in agony the whole time. I suspect that my co-existing skin conditions tend to flare each other up and that my skin barrier is very weak as a result.

        So, I would very much welcome any advice or suggestions on what to do next. Potential things I have thought about are:

        - continuing with the Clonidine and Mirtazapine as these do seem to be helping (in people's experience, do the effects build up over time?)
        - doing a very strict elimination/anti-inflammatory diet to really pinpoint any food triggers
        - trying RLT
        - trying other medications such as Mepacrine or Plaquenil
        - trying a beta blocker such as Propranolol
        - trying to repair my skin barrier - anyone have any advice on how to do this?
        - from the research I have done, it seems that antibiotics don't really help subtype 1 rosacea - but would it be worth trying out Oracea just to see if it helps?

        Anyone have any advice or suggestions? I am due to see Dr Chu again in late September. He is truly a fantastic doctor and pioneering in the rosacea field I believe, but in my two appointments so far (as he is so busy) the appointment goes very quickly and I haven't been able to really discuss my condition with him in depth.

        All the best,
        Madhatter
        Hi Madhatter

        i also suffer from subtype 1 and have had to deal with the flushing and horrible burning sensations for over ten years now, so i understand the pain you have been experiencing. In my case, i was put on a low dose of clonidine, 50 mcg per day, by my doctor, to see if it helped with my flushing and burning. Like you, i did experience some improvement, but it was by no means significant enough to improve my life, so i went back to my dermatologist. To cut a long story short, i am now on 150 mcg of clonidine per day, and although it has not stopped my flushing and burning completely, i am much better than i was before using this drug. Dont get me wrong, i still struggle, i still have horrible days, but before taking clonidine, everyday was completely unbearable. My point is, it might be worth discussing a higher dose of clonidine with your dermatologist,(make sure he listens to what you have to say), it might be worth a try. In addition to this, I have also found improvement through ipl treatments, moisturising and sunscreen, but i am fully aware that everyone has different experiences with their symptoms and conditions, so what works for one, might not work for another. I hope this helps a little Madhatter and i hope you have success in improving your condition.

        burner

        Comment


        • #5
          Originally posted by madhatter View Post
          I should clarify that the antibiotics Dr Chu prescribed were for the infected dermatitis, not the rosacea, and were only a one week course (Doxy 100mg per day). The course cleared the infection up and my skin was very good for around 2 weeks after that.
          Hi mad hatter, very sorry you are going through this. Did your flares
          Totally subside then on the doxy? Because if so, perhaps this is
          A medication you could consider while you evaluate your next step.

          I'm not familiar with the meds you are currently taking, although like
          You, I read all I can about them knowing the strong possibility
          Of having to make these choices in the future. Have pinned down
          The nature of your exact triggers? One of my worst is heat combined
          With strong light and humidity. This is very basic, so forgive me if
          You have tried: icing your facial skin? The method I have worked
          For myself ( I live in a semi tropical climate) is this: even if I have
          A pretty bad flush, I just touch the ice pack to skin for 60 sec.
          On each area and wait several minutes before applying again. Rebound
          Flushing and freezing the delicate skin is why I'm so overly careful. So
          Far, it takes time, but I can ease the flair down. I recently bought a
          Freeze "roller" like the one derms use after an IPL from Amazon. It
          Goes in the freezer and I simply roll the coolness on my skin. The
          Smooth metal roller is filled with a gel. So it freezes and you can
          Roll the coolness on very evenly over the whole face. I then spray
          Avene thermal water on my skin. This is very calming to my skin
          And lately, because of this product, I can dine outside in the
          Evening with friends and cool my skin when it starts to get
          Warm.

          I don't know how much you have read about manuka honey or raw
          Honey as a cleanser for your face. It took me many months ( Auburn's
          Treatment) at a very slow pace ( I have seb derm as well) and what I
          Have discovered is how remarkable the skin barrier improvement is.
          Still flush, yes. But my skin looks better, feels better and never/ almost
          Do I need moisturizer since honey is great humectant. Since you
          Were diagnosed with an infection, perhaps honey with its anti-
          Bacterial properties would be helpful?

          Last, a year ago I started eating Paleo diet. The improvements in
          My skin in 2 weeks was miraculous. Since, I've added more carbs
          Because the diet caused great weight loss. Still trying how to
          Manage the carbs as they do inflame my skin. Currently I'm
          Reducing my gluten intake to almost zero. Then, zero.

          There are other things that help, but this post is getting long. I
          Would suggest certain supplements but as you are on these meds,
          It may not be a good idea. Hope this helps. Birdie

          Additionally: in my experience it is worth it to get your thyroid levels
          Hormone levels and cortisone levels checked. There other things
          That cause flushing.
          Last edited by Birdie; 3 August 2014, 11:25 AM. Reason: Addition

          Comment


          • #6
            Thank you all very much for taking the time to reply, it is very kind of you and I really appreciate it.

            Davekelly - Thanks for your comment, I agree generally with the idea of putting as little on the skin as possible. I am pretty minimal with my skincare although my skin does seem to benefit from using a little moisturiser (Avene) and it doesn't seem to irritate it. Also, I have facial eczema this tends to flare up more if I don't moisturise. I also agree with you in terms of avoiding triggers and try and do this as much as possible although as my main triggers seem to be heat and sleeping, this is difficult - the only way would be to stop living really! I don't really go in direct sun and always wear a wide brimmed hat. Any tips on how you avoid your heat-related triggers? I'll try and put a picture up soon to show you my symptoms. Although I'd rather not be on medication, (and hope that I'll be able to come off it down the line), I'm determined to do absolutely everything in my power to tackle my rosacea, so as this seems to be helping my plan is to stick with it for now. Horses for courses!

            Burner - Thanks for posting and glad that you too found some relief from Clonidine. That's a good idea re increasing the dose to see if it helps - indeed, Dr Chu did say that I could increase the dose up to 3 x .75mcg a day, so I might try this and see if it makes a difference. I'm a bit scared to try IPL because of all the negative stories I have read (and I seem to have very sensitive, reactive skin) but it's definitely something to keep in mind down the line I think as many people like yourself report benefit. I notice you are also in the UK, do you see Dr Crouch in Swindon? As you also have bad flushing, have you tried out any of the other medications like mirtazapine or the anti-malarials?

            Birdie - Thanks very much for all your helpful advice. If I'm having a really bad flare up (like now in fact) I do find some relief in cool packs, I also keep a big bottle of water in the freezer so that I always have ice water to sip on which also seems to help calm down a flush. The roller sounds interesting as well! I've read the warm room phenomenon though and am a bit wary of constantly cooling my face, so I think your caution of avoiding prolonged icing/rebound flushing is an important one. And, as of tomorrow, I'm going to be quite strict with my diet (I think Paleo is a good fit for me too) and see if that helps - difficult as I have a very sweet tooth, especially with the mirtazapine, but if it helps my skin I'll give it a go! At the very least, it can only improve one's overall health which has to be a positive (I suppose one of the silver linings of this condition is that it compels you to become a healthier person overall?). Inspiring to hear that you have found improvement with this. I'll keep a journal and report back on my progress. Also, I'd be interested to hear about what supplements you might recommend - I'm not aware of any negative interactions my medication might potentially have with supplements but will be sure to research it.

            Once again, thanks everyone for your words of wisdom and advice. Have a lovely evening.

            Comment


            • #7
              Originally posted by madhatter View Post
              Thank you all very much for taking the time to reply, it is very kind of you and I really appreciate it.

              Davekelly - Thanks for your comment, I agree generally with the idea of putting as little on the skin as possible. I am pretty minimal with my skincare although my skin does seem to benefit from using a little moisturiser (Avene) and it doesn't seem to irritate it. Also, I have facial eczema this tends to flare up more if I don't moisturise. I also agree with you in terms of avoiding triggers and try and do this as much as possible although as my main triggers seem to be heat and sleeping, this is difficult - the only way would be to stop living really! I don't really go in direct sun and always wear a wide brimmed hat. Any tips on how you avoid your heat-related triggers? I'll try and put a picture up soon to show you my symptoms. Although I'd rather not be on medication, (and hope that I'll be able to come off it down the line), I'm determined to do absolutely everything in my power to tackle my rosacea, so as this seems to be helping my plan is to stick with it for now. Horses for courses!

              Burner - Thanks for posting and glad that you too found some relief from Clonidine. That's a good idea re increasing the dose to see if it helps - indeed, Dr Chu did say that I could increase the dose up to 3 x .75mcg a day, so I might try this and see if it makes a difference. I'm a bit scared to try IPL because of all the negative stories I have read (and I seem to have very sensitive, reactive skin) but it's definitely something to keep in mind down the line I think as many people like yourself report benefit. I notice you are also in the UK, do you see Dr Crouch in Swindon? As you also have bad flushing, have you tried out any of the other medications like mirtazapine or the anti-malarials?

              Birdie - Thanks very much for all your helpful advice. If I'm having a really bad flare up (like now in fact) I do find some relief in cool packs, I also keep a big bottle of water in the freezer so that I always have ice water to sip on which also seems to help calm down a flush. The roller sounds interesting as well! I've read the warm room phenomenon though and am a bit wary of constantly cooling my face, so I think your caution of avoiding prolonged icing/rebound flushing is an important one. And, as of tomorrow, I'm going to be quite strict with my diet (I think Paleo is a good fit for me too) and see if that helps - difficult as I have a very sweet tooth, especially with the mirtazapine, but if it helps my skin I'll give it a go! At the very least, it can only improve one's overall health which has to be a positive (I suppose one of the silver linings of this condition is that it compels you to become a healthier person overall?). Inspiring to hear that you have found improvement with this. I'll keep a journal and report back on my progress. Also, I'd be interested to hear about what supplements you might recommend - I'm not aware of any negative interactions my medication might potentially have with supplements but will be sure to research it.

              Once again, thanks everyone for your words of wisdom and advice. Have a lovely evening.
              Its the only product I use on my face because I have to shave . ha ha

              I use the Avene extremely gentle face wash . Ive been using it for about 18 years now . It doesn't dry my skin . So I don't need any moisturiser .

              Eczema you have on your face . that's a spanner in the works .

              The only supplement I do take is Organic Flax seed oil . very similar to Udos Oil .. omega 3,6.9 blend because. I don't eat much fish at all .

              Your Face needs good fats .

              Over all you seem to be heading in the right direction . Take care Im always here to chat

              Comment


              • #8
                Originally posted by madhatter View Post
                Hi fellow rosaceans

                I have been reading this forum for a few months so I thought I would introduce myself and firstly say thank you for all the invaluable information I have found on this forum. Secondly, I would welcome your views on potential treatment options to pursue.

                My story
                I'm a 30 year old female without a typical atopic profile (very fair, porcelain skin, eczema, allergies, childhood asthma). Shortly after moving to London from Sydney in April this year to start a new job as a lawyer, I began experiencing severe facial burning and flushing. It was so severe that I couldn't sleep at all, and was in intense pain at work - it felt like someone was pouring acid all over my face. The GP I saw initially thought it was allergies/eczema and prescribed me a strong antihistamine together with a steroid cream. The antihistamines didn't really help matters and I was loath to use the steroid on my face as I was aware of the potential side-effects. Also, from the research I had done, my symptoms seemed more like rosacea than eczema. So I got myself an appointment to see Dr Chu in July and, in the meantime, convinced the GP and another dermatologist I saw to put me on Clonidine and Mirtazapine based on the research I had done on the forum and the wonderful Natalja's very helpful blog. I also started being quite careful with my diet (cutting out alcohol and trying to adopt a low carb/low sugar diet) and doing anything I could to minimise allergies (taking the antihistamine, getting dustmite covers, keeping a very clean apartment etc). Oh, and I also stay out of the sun, use mineral makeup with an SPF (Jane Iredale) and use very gentle skincare (wash my face with bottled water and use the Avene Tolerance Extreme line and thermal mist).

                - continuing with the Clonidine and Mirtazapine as these do seem to be helping (in people's experience, do the effects build up over time?)
                - doing a very strict elimination/anti-inflammatory diet to really pinpoint any food triggers
                - trying RLT
                - trying other medications such as Mepacrine or Plaquenil
                - trying a beta blocker such as Propranolol
                - trying to repair my skin barrier - anyone have any advice on how to do this?
                - from the research I have done, it seems that antibiotics don't really help subtype 1 rosacea - but would it be worth trying out Oracea just to see if it helps?

                Anyone have any advice or suggestions? I am due to see Dr Chu again in late September. He is truly a fantastic doctor and pioneering in the rosacea field I believe, but in my two appointments so far (as he is so busy) the appointment goes very quickly and I haven't been able to really discuss my condition with him in depth.

                All the best,
                Madhatter
                Reads like a classic case of how Rosacea first starts. Severe episodes of facial flushing out of the blue when you have rarely if at all flushed in your life before. I wonder how it first started with you, what you were doing when you had your first ever flareup..
                After years of flushing/flare-ups and facial swelling what helped me was 3 months with a very strict non processed food diet. More or less like Paleo but a bit easier. No bread, no food with refined sugar(i.e 90% of food available in supermarkets) no more than 50 carbs a day in total . The only natural food I cut out were potatoes, bananas and rice as they are packed with carbs. I also only drank water and nothing else for 3 months which I found helped greatly reduce flushing. It was basically impossible to put on weight eating like this so I eat huge amounts and was never hungry. After the first week I was surprised how easy it was. Now after those 3 months I can eat a wider range of foods and more carbs but the flushing has never been as severe.

                The other important treatment and biggest surprise that helped me after years trying every medication was the sun. It sounds ridiculous and we hear horror stories about the sun and Rosacea, but I found staying out in the strong sun for a maximum of 7 minutes at a time for 4 times a day had a huge impact on reducing and getting rid of flushing. For 7 minutes I go out in the sun with no sun cream at 9am, 11am, 2pm and 4pm. So 28 minutes in total, not long enough to damage or burn my skin. After 3 months of doing that the flushing is gone.
                Interestingly on pubmed a new july 2014 medical journal on the cause of Rosacea states that people in the northern hemisphere develop a mechanism that overproduces the skins innate immune defence to make up for a lack of sun. That is what then leads them to become more susceptible to developing Rosacea. Getting more natural sun in a safe non dangerous way might switch that mechanism off. I am amazed at what 3 months of going in the sun for short periods has done to my flushing.
                Last edited by redtere; 4 August 2014, 01:03 PM.

                Comment


                • #9
                  Originally posted by redtere View Post
                  Reads like a classic case of how Rosacea first starts. Severe episodes of facial flushing out of the blue when you have rarely if at all flushed in your life before. I wonder how it first started with you, what you were doing when you had your first ever flareup..
                  After years of flushing/flare-ups and facial swelling what helped me was 3 months with a very strict non processed food diet. More or less like Paleo but a bit easier. No bread, no food with refined sugar(i.e 90% of food available in supermarkets) no more than 50 carbs a day in total . The only natural food I cut out were potatoes, bananas and rice as they are packed with carbs. I also only drank water and nothing else for 3 months which I found helped greatly reduce flushing. It was basically impossible to put on weight eating like this so I eat huge amounts and was never hungry. After the first week I was surprised how easy it was. Now after those 3 months I can eat a wider range of foods and more carbs but the flushing has never been as severe.

                  The other important treatment and biggest surprise that helped me after years trying every medication was the sun. It sounds ridiculous and we hear horror stories about the sun and Rosacea, but I found staying out in the strong sun for a maximum of 7 minutes at a time for 4 times a day had a huge impact on reducing and getting rid of flushing. For 7 minutes I go out in the sun with no sun cream at 9am, 11am, 2pm and 4pm. So 28 minutes in total, not long enough to damage or burn my skin. After 3 months of doing that the flushing is gone.Interestingly on pubmed a new july 2014 medical journal on the cause of Rosacea states that people in the northern hemisphere develop a mechanism that overproduces the skins innate immune defence to make up for a lack of sun. That is what then leads them to become more susceptible to developing Rosacea. Getting more natural sun in a safe non dangerous way might switch that mechanism off. I am amazed at what 3 months of going in the sun for short periods has done to my flushing.
                  You must be a unique case mate . Because if any other Flusher followed that advice it would pure madness .

                  What about 4 X 7 minutes at a time in a heated room as well every day .You might as well throw that in also
                  Last edited by davekelly; 4 August 2014, 05:28 PM.

                  Comment


                  • #10
                    xxxxxxx

                    Originally posted by madhatter View Post
                    Hi fellow rosaceans

                    I have been reading this forum for a few months so I thought I would introduce myself and firstly say thank you for all the invaluable information I have found on this forum. Secondly, I would welcome your views on potential treatment options to pursue.

                    My story
                    I'm a 30 year old female without a typical atopic profile (very fair, porcelain skin, eczema, allergies, childhood asthma). Shortly after moving to London from Sydney in April this year to start a new job as a lawyer, I began experiencing severe facial burning and flushing. It was so severe that I couldn't sleep at all, and was in intense pain at work - it felt like someone was pouring acid all over my face. The GP I saw initially thought it was allergies/eczema and prescribed me a strong antihistamine together with a steroid cream. The antihistamines didn't really help matters and I was loath to use the steroid on my face as I was aware of the potential side-effects. Also, from the research I had done, my symptoms seemed more like rosacea than eczema. So I got myself an appointment to see Dr Chu in July and, in the meantime, convinced the GP and another dermatologist I saw to put me on Clonidine and Mirtazapine based on the research I had done on the forum and the wonderful Natalja's very helpful blog. I also started being quite careful with my diet (cutting out alcohol and trying to adopt a low carb/low sugar diet) and doing anything I could to minimise allergies (taking the antihistamine, getting dustmite covers, keeping a very clean apartment etc). Oh, and I also stay out of the sun, use mineral makeup with an SPF (Jane Iredale) and use very gentle skincare (wash my face with bottled water and use the Avene Tolerance Extreme line and thermal mist).

                    I started on the Clonidine (50mcg 3 times a day) and Remeron (15mg taken just before bed) in May. These did seem to help quite a bit, and the Remeron certainly helps me sleep. So far I haven't had any side effects from these meds - I already had low blood pressure but the Clonidine didn't lower it too much more, and I haven't put on any weight from the Remeron thus far.

                    However, just before seeing Dr Chu, in June, I had a very nasty outbreak where my whole face was red, burning and incredibly swollen for around a week (for which time I couldn't go to work). I was virtually unrecognisable. My mum even flew over from Australia to support me as I was very scared, unable to sleep due to the pain and having some dark thoughts. I saw Dr Chu and he diagnosed me with co-existing conditions - severe atopic dermatitis (which had become infected) and rosacea. He prescribed an antibiotic (doxy) and told me I was on the right path with the Clonidine and Remeron for the rosacea.

                    I also went to an allergist/immunologist and been tested for allergies and other conditions such as mastocytosis and lupus. Tests came back negative for mastocytosis and lupus, however my Immunoglobin E levels were extremely high and allergy tests revealed very severe allergies to dustmites and moderate allergies to pollen and cat dander.

                    What next?

                    Unfortunately, while my symptoms have diminished due to the medication, I'm still experiencing very painful flare ups and the condition has a significant effect on my quality of life. In particular, I react very badly to heat (including hot food) and warm rooms (which is very hard to control). My flushing also seems to come on during sleep (although I try to alleviate this by sleeping with my head elevated and with light covers on). I think stress is also a trigger so I try and stay as calm as possible - that being said, I'm a very calm, chilled out person naturally and it's only since experiencing this very painful condition that I have become stressed. I have a position as a barrister to start next year and am terrified about the potential impact of the condition on my career (I can't imagine making submissions to a judge while experiencing the intense burning pain). Also, I hate the unpredictability of the condition and not being able to plan things - I've already had to cancel trips due to extreme flare ups and suffered through my horrible 30th birthday party where the heating caused my cheeks to burn intensely - I stayed out due to all the people that had come to see me but was in agony the whole time. I suspect that my co-existing skin conditions tend to flare each other up and that my skin barrier is very weak as a result.

                    So, I would very much welcome any advice or suggestions on what to do next. Potential things I have thought about are:

                    - continuing with the Clonidine and Mirtazapine as these do seem to be helping (in people's experience, do the effects build up over time?)
                    - doing a very strict elimination/anti-inflammatory diet to really pinpoint any food triggers
                    - trying RLT
                    - trying other medications such as Mepacrine or Plaquenil
                    - trying a beta blocker such as Propranolol
                    - trying to repair my skin barrier - anyone have any advice on how to do this?
                    - from the research I have done, it seems that antibiotics don't really help subtype 1 rosacea - but would it be worth trying out Oracea just to see if it helps?

                    Anyone have any advice or suggestions? I am due to see Dr Chu again in late September. He is truly a fantastic doctor and pioneering in the rosacea field I believe, but in my two appointments so far (as he is so busy) the appointment goes very quickly and I haven't been able to really discuss my condition with him in depth.

                    All the best,
                    Madhatter
                    JUST MY OPINION.
                    I think you are suffering from this condition because your biology is tuned to the warmer austrailian climate . When you were back home before you woke up you would sweat from the T- zone on your face. I suspect this does not happen now consequently you are really suffering from not only partially formed secretions but unsecreted secretions. These are toxic and cause the inflammation and redness. Complete digestion cannot be qualified until the waste is excreted. Albiet it is more complicated.

                    Personally my opinion is if you go down the derm route you will never achieve the desired result. The reason for saying this is because these conditions a biologically self perpetuating; tomorrows skin is created today. Only the sufferer can cure this condition and no one else; do not be seduced into laser treatment or else
                    cure

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                    • #11
                      Originally posted by davekelly View Post
                      Its the only product I use on my face because I have to shave . ha ha

                      I use the Avene extremely gentle face wash . Ive been using it for about 18 years now . It doesn't dry my skin . So I don't need any moisturiser .

                      Eczema you have on your face . that's a spanner in the works .

                      The only supplement I do take is Organic Flax seed oil . very similar to Udos Oil .. omega 3,6.9 blend because. I don't eat much fish at all .

                      Your Face needs good fats .

                      Over all you seem to be heading in the right direction . Take care Im always here to chat
                      Thanks davekelly. Totally agree re the good fats idea - as of today I've started quite a strict Paleo type diet which will incorporate lots of good fats - oily fish, lots of vegetables, olive/coconut oil etc. Will also take flaxseed oil supplements as well and see if that helps (fish oil seems to make me flush for some reason).

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                      • #12
                        Originally posted by redtere View Post
                        Reads like a classic case of how Rosacea first starts. Severe episodes of facial flushing out of the blue when you have rarely if at all flushed in your life before. I wonder how it first started with you, what you were doing when you had your first ever flareup..
                        After years of flushing/flare-ups and facial swelling what helped me was 3 months with a very strict non processed food diet. More or less like Paleo but a bit easier. No bread, no food with refined sugar(i.e 90% of food available in supermarkets) no more than 50 carbs a day in total . The only natural food I cut out were potatoes, bananas and rice as they are packed with carbs. I also only drank water and nothing else for 3 months which I found helped greatly reduce flushing. It was basically impossible to put on weight eating like this so I eat huge amounts and was never hungry. After the first week I was surprised how easy it was. Now after those 3 months I can eat a wider range of foods and more carbs but the flushing has never been as severe.

                        The other important treatment and biggest surprise that helped me after years trying every medication was the sun. It sounds ridiculous and we hear horror stories about the sun and Rosacea, but I found staying out in the strong sun for a maximum of 7 minutes at a time for 4 times a day had a huge impact on reducing and getting rid of flushing. For 7 minutes I go out in the sun with no sun cream at 9am, 11am, 2pm and 4pm. So 28 minutes in total, not long enough to damage or burn my skin. After 3 months of doing that the flushing is gone.
                        Interestingly on pubmed a new july 2014 medical journal on the cause of Rosacea states that people in the northern hemisphere develop a mechanism that overproduces the skins innate immune defence to make up for a lack of sun. That is what then leads them to become more susceptible to developing Rosacea. Getting more natural sun in a safe non dangerous way might switch that mechanism off. I am amazed at what 3 months of going in the sun for short periods has done to my flushing.
                        Thanks for the reply Redtere - looking back I think I had the beginnings of the rosacea in Australia shortly before I left for England, when small pink patches starting appearing on my cheeks, forehead and eyelids - although I thought it was an allergic reaction or eczema (even though I'd never really had eczema on my face before).

                        I am going to give the diet thing a good try. Nothing to lose, right! (Well, except the sensory pleasure of eating chocolate and other sweet foods which is not to be discounted :-)) It's very encouraging to hear about other people's success and I'm very pleased for you that your flushing has reduced so much, so thanks for sharing this.

                        In terms of sunlight, that's very interesting - I'm generally pretty careful with the sun but do find my skin seems to do better when it's warmer and mildly humid/I get a little bit of sun on my body (maybe because this is good for the eczema and the eczema seems to flare my rosacea up - they egg each other on, so to speak).

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                        • #13
                          Originally posted by madhatter View Post
                          Thanks davekelly. Totally agree re the good fats idea - as of today I've started quite a strict Paleo type diet which will incorporate lots of good fats - oily fish, lots of vegetables, olive/coconut oil etc. Will also take flaxseed oil supplements as well and see if that helps (fish oil seems to make me flush for some reason).
                          Same here when I used to take cod liver oil . Hopefully you will see a big improvement soon .

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                          • #14
                            Hi Madhatter,
                            My suggestion is strenghten your skin barrier A multivitamin for starter if you can handle them and you're not already taking any. To me it sounds as if you're having a mite allergy, even more so since you're allergic to dust mites and cat dander. It can get worse at night (heat, humidity, stress) so that's a hint. If you haven't tried something like tea tree oil to get rid of your own mites that would be the best way to start, simply adding a few drops to your facial cream and then increasing it.

                            Histamine rich food might contribute a lot, I've always been eating an anti histamine diet, but it seems as if I have to go even further. Since you do have pollen allergy that might worsen your symtoms during that season. What type/s of pollen are you allergic to?
                            Are you aware of cross reactions to food while being allergic to pollen?

                            Best of luck!

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                            • #15
                              Me too, I also react very badly to fish oil.

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