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Re: Help I'm burning up

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  • damomaxwell10
    Thanks KHM and everyone else for your help. I have had about 6 laser treatments using a Versapulse and Gemini laser but it hasn t been effetive for the burning
    Message 1 of 19 , Nov 1, 2009
      Thanks KHM and everyone else for your help.

      I have had about 6 laser treatments using a Versapulse and Gemini laser but it hasn't been effetive for the burning and swelling. Do any of you know if there are any better lasers to use that could make a difference ?

      In regards to Roaccutane. After having just one tablet I noticed my face go a shade whiter but it plateaued there at hasn't budged any further. I kept on taking it for a while but I felt it may have been aggravating things so I've stopped. Not sure if this is right thing to do or whether I should persist further on the expectation of turning a corner at some stage. Any insight people have with Roaccutane I'd be interested to hear.

      Has anyone else been presribed Neurotin ? ... its not something my dermatologist has mentioned. Is there any view on how effective it is for burning ? ... does it help swelling / inflammation ? .... what are the side effects ?

      My dermatologist has mentioned a drug called Endep which she says can in some patients help settle down the facial nerves and reduce pain. Has anyone ever used this and how effective was it ?

      With respect to oral steriods I'd be interested to hear peoples experiences. Its again not something my dermatologist has mentioned. I read somewhere that a short course can knock the inflammation down further whilst the other treatments keep it down. Not sure how true or safe this is ?!

      Is EM something my dermatolgist would be able to pick up ? .... I don't have severe redness so I'm thinking perhaps I don't have it? !

      I had real hope that I could get this under control but I feel there is very little more that Dermatologists can offer .... am I correct in thinking this ? ...is it realistic to think that the burning / swelling will ever go away given the ineffectiveness of the treaments I've tried ??? .... do people with burning/swelling ever spontaneously go into remission ??

      This darned Rosacea has become a big big problem for me, in particular ,my ability to do my job now let alone in the future. I feel completely trapped and close to been out of treatment options.

      Finally (I apologise for the long email) but does anyone know of a dermatologist in Melbourne, Australia (preferrably) or Sydney, Australia that is willing to think outside the tired old ineffective treatments and perhaps have ideas or treatments that are at the forefront of rosacea treatment ??

      Guys, any further guidance you can provide would be much appreciated.

      Thanks


      --- In rosacea-support@yahoogroups.com, "khm4aim" <khm4aim@...> wrote:
      >
      > Humm -
      >
      > OK - here are a couple thoughts:
      >
      > I have used multiple rounds of laser/IPL of various types.
      >
      > For the burning/pain I found IPL to be more effective. however, I started IPL within a couple months of developing the severe burning sensations, so maybe timing has something to do with it as well.
      >
      > You need to break the inflamation cycle.
      >
      > A couple things I noticed made a very quick difference:
      >
      > Alpha Lipoic Acid - by mouth at leas 300 MG/day
      > Boswellia - consider it short term therapy. I don't know that there are any reports on long term therapy.
      >
      > It could not hurt and might help a lot if you did a diet that restricted sugar, carbs, animal fats (all inflamatory). Stage 1 of South Beach made a difference for me in about 5 days, no joke.
      >
      > There is also some evidence that egg yolks are an issue for some sensitive individuals, particulary scrambled. Not a problem for me as far as I can see, but . . . .
      >
      > How would you tolerate a short term course of oral steriod? I mean short - that stuff is NASTY.
      >
      > Hope there is something helpful for you here
      >
      > KHM
      >
      > --- In rosacea-support@yahoogroups.com, "damomaxwell10" <damomaxwell10@> wrote:
      > >
      > > Hi All .... my Rosacea presents itself with severe burning, sensivity and swelling sensations particularly of the nose.
      > >
      > >
      > > I've managed to get the inflammation somewhat but its still a daily struggle because even talking causes the burning to increase. Its like have severe sunburn all day every day without relief. The burning never goes away.
      > > my sensitivty and the burning pain is becoming debilitating.
      > >
      > > I'm at a loss as to what to do ? .... I've tried laser with little success.
      > >
      >
      > >
      >
    • Gabriella
      If you are considering Alpha Lipoic, as KHM recommended, I ve heard really good things about Jarrow s. Diabetics get a lot of relief from nerve pain. It s
      Message 2 of 19 , Nov 2, 2009
        If you are considering Alpha Lipoic, as KHM recommended, I've heard really good things about Jarrow's. Diabetics get a lot of relief from nerve pain. It's sustained release. Read some reviews of it here:

        http://www.iherb.com/Alpha-Lipoic-Sustain-300-with-Biotin-300-mg-60-Bilayer-Tablets/143?at=0


        Good luck!!!

        Gabriella



        --- In rosacea-support@yahoogroups.com, "damomaxwell10" <damomaxwell10@...> wrote:
        >
        > Thanks KHM and everyone else for your help.
        >
        > I have had about 6 laser treatments using a Versapulse and Gemini laser but it hasn't been effetive for the burning and swelling. Do any of you know if there are any better lasers to use that could make a difference ?
        >
        > In regards to Roaccutane. After having just one tablet I noticed my face go a shade whiter but it plateaued there at hasn't budged any further. I kept on taking it for a while but I felt it may have been aggravating things so I've stopped. Not sure if this is right thing to do or whether I should persist further on the expectation of turning a corner at some stage. Any insight people have with Roaccutane I'd be interested to hear.
        >
        > Has anyone else been presribed Neurotin ? ... its not something my dermatologist has mentioned. Is there any view on how effective it is for burning ? ... does it help swelling / inflammation ? .... what are the side effects ?
        >
        > My dermatologist has mentioned a drug called Endep which she says can in some patients help settle down the facial nerves and reduce pain. Has anyone ever used this and how effective was it ?
        >
        > With respect to oral steriods I'd be interested to hear peoples experiences. Its again not something my dermatologist has mentioned. I read somewhere that a short course can knock the inflammation down further whilst the other treatments keep it down. Not sure how true or safe this is ?!
        >
        > Is EM something my dermatolgist would be able to pick up ? .... I don't have severe redness so I'm thinking perhaps I don't have it? !
        >
        > I had real hope that I could get this under control but I feel there is very little more that Dermatologists can offer .... am I correct in thinking this ? ...is it realistic to think that the burning / swelling will ever go away given the ineffectiveness of the treaments I've tried ??? .... do people with burning/swelling ever spontaneously go into remission ??
        >
        > This darned Rosacea has become a big big problem for me, in particular ,my ability to do my job now let alone in the future. I feel completely trapped and close to been out of treatment options.
        >
        > Finally (I apologise for the long email) but does anyone know of a dermatologist in Melbourne, Australia (preferrably) or Sydney, Australia that is willing to think outside the tired old ineffective treatments and perhaps have ideas or treatments that are at the forefront of rosacea treatment ??
        >
        > Guys, any further guidance you can provide would be much appreciated.
        >
        > Thanks
        >
        >
        > --- In rosacea-support@yahoogroups.com, "khm4aim" <khm4aim@> wrote:
        > >
        > > Humm -
        > >
        > > OK - here are a couple thoughts:
        > >
        > > I have used multiple rounds of laser/IPL of various types.
        > >
        > > For the burning/pain I found IPL to be more effective. however, I started IPL within a couple months of developing the severe burning sensations, so maybe timing has something to do with it as well.
        > >
        > > You need to break the inflamation cycle.
        > >
        > > A couple things I noticed made a very quick difference:
        > >
        > > Alpha Lipoic Acid - by mouth at leas 300 MG/day
        > > Boswellia - consider it short term therapy. I don't know that there are any reports on long term therapy.
        > >
        > > It could not hurt and might help a lot if you did a diet that restricted sugar, carbs, animal fats (all inflamatory). Stage 1 of South Beach made a difference for me in about 5 days, no joke.
        > >
        > > There is also some evidence that egg yolks are an issue for some sensitive individuals, particulary scrambled. Not a problem for me as far as I can see, but . . . .
        > >
        > > How would you tolerate a short term course of oral steriod? I mean short - that stuff is NASTY.
        > >
        > > Hope there is something helpful for you here
        > >
        > > KHM
        > >
        > > --- In rosacea-support@yahoogroups.com, "damomaxwell10" <damomaxwell10@> wrote:
        > > >
        > > > Hi All .... my Rosacea presents itself with severe burning, sensivity and swelling sensations particularly of the nose.
        > > >
        > > >
        > > > I've managed to get the inflammation somewhat but its still a daily struggle because even talking causes the burning to increase. Its like have severe sunburn all day every day without relief. The burning never goes away.
        > > > my sensitivty and the burning pain is becoming debilitating.
        > > >
        > > > I'm at a loss as to what to do ? .... I've tried laser with little success.
        > > >
        > >
        > > >
        > >
        >
      • Russie Smith
        Hello all, My derm has suggested I try Pyratine XR cream. It is extremely expensive $150 per bottle of the cream and was wondering how long a bottle lasts. I
        Message 3 of 19 , Nov 2, 2009
          Hello all,

          My derm has suggested I try Pyratine XR cream. It is extremely expensive $150 per bottle of the cream and was wondering how long a bottle lasts.
          I am fairly skeptical about buying something so expensive, so any feedback would be most appreciated!

          Thanks.

          Russie
        • Lauria
          Does anyone ever look into this?? http://www.rosacea.org/patients/materials/triggers.php Are they saying that these definetly make you flare up?? I eat alot
          Message 4 of 19 , Nov 9, 2009
            Does anyone ever look into this??
            http://www.rosacea.org/patients/materials/triggers.php
            Are they saying that these definetly make you flare up?? I eat alot of Spinach and I don't flare up. Or does it only flare on some people?? I'm confuse..
            Lauria


            [Non-text portions of this message have been removed]
          • Maura Anderson
            As evidenced by the title Factors that MAY trigger rosacea flare-ups and the fact this was compiled from patient histories, no, they are not definite
            Message 5 of 19 , Nov 9, 2009
              As evidenced by the title "Factors that MAY trigger rosacea flare-ups" and
              the fact this was compiled from patient histories, no, they are not definite
              triggers for everyone.

              Every case is individual and everyone has different sets of triggers that
              may overlap. It would be far easier if there was a list of triggers everyone
              could avoid and thus be fine.

              - M

              On Mon, Nov 9, 2009 at 8:20 PM, Lauria <goldpony@...> wrote:

              > Does anyone ever look into this??
              > http://www.rosacea.org/patients/materials/triggers.php
              > Are they saying that these definetly make you flare up?? I eat alot of
              > Spinach and I don't flare up. Or does it only flare on some people?? I'm
              > confuse..
              > Lauria
              >
              >
              > [Non-text portions of this message have been removed]
              >
              >
              >
              > ------------------------------------
              >
              > --
              > NEW!: Rosacea Support Community http://rosacea-support.org/community
              > Resource Pages: http://rosacea-research.org/wiki
              > Yahoo! Groups Links
              >
              >
              >
              >


              --
              Maura Anderson - Author of Sensual, Magical, Unconventional Tales
              Bittersweet -- available NOW from Aspen Mountain Press
              Escape to Me -- available soon from Ellora's Cave
              http://www.realmsoftheraven.com


              [Non-text portions of this message have been removed]
            • Aurelia.Dawn
              Hi Laura, Yes, is the web site of the National Rosacea Society (NRS), a body set up to increase awareness of rosacea by educating patients,
              Message 6 of 19 , Nov 9, 2009
                Hi Laura,

                Yes, < rosacea.org > is the web site of the National Rosacea Society (NRS), a body set up to increase awareness of rosacea by educating patients, doctors and the public, and by encouraging research, including funding studies.

                As Maura said, that is a list of triggers that might POSSIBLY cause flare-ups for SOME rosaceans. It is best read in conjunction with the NRS's list showing triggers by percentage of survey respondents. Perhaps best to start from this page, which has three links leading off it:
                http://www.rosacea.org/patients/materials/triggersindex.php

                "Below are lists of common rosacea trigger factors that may affect various individuals. The first was compiled from patient histories, and the second lists results of a patient survey by the National Rosacea Society. Neither list necessarily includes everything that may cause a flare-up, but they may be helpful in determining one's own trigger factors. Patients are encouraged to keep a diary of daily activities or events and relate them to any flare-ups they may experience."

                1. things that have been recorded as triggers by at least one patient of the (most eminent) derm who compiled the list:
                http://www.rosacea.org/patients/materials/triggers.php

                2. list showing the percentage of people affected by particular triggers, from a survey of 1,066 rosaceans. Many people have multiple triggers, but most have just a few and some never identify any.
                http://www.rosacea.org/patients/materials/triggersgraph.php

                3. diary form to help identify personal triggers (can be printed out or mailed)
                http://www.rosacea.org/patients/materials/diary/index.php

                Kind regards,

                Aurelia
              • Lauria
                That s what I thought. The only thing that flared my Rosacea are Pineapple and Cherry. Lauria ... From: Maura Anderson To: rosacea-support@yahoogroups.com
                Message 7 of 19 , Nov 10, 2009
                  That's what I thought. The only thing that flared my Rosacea are Pineapple and Cherry.
                  Lauria

                  ----- Original Message -----
                  From: Maura Anderson
                  To: rosacea-support@yahoogroups.com
                  Sent: Monday, November 09, 2009 10:56 PM
                  Subject: Re: [rosacea] Rosacea.org



                  As evidenced by the title "Factors that MAY trigger rosacea flare-ups" and
                  the fact this was compiled from patient histories, no, they are not definite
                  triggers for everyone.

                  Every case is individual and everyone has different sets of triggers that
                  may overlap. It would be far easier if there was a list of triggers everyone
                  could avoid and thus be fine.

                  - M

                  On Mon, Nov 9, 2009 at 8:20 PM, Lauria <goldpony@...> wrote:

                  > Does anyone ever look into this??
                  > http://www.rosacea.org/patients/materials/triggers.php
                  > Are they saying that these definetly make you flare up?? I eat alot of
                  > Spinach and I don't flare up. Or does it only flare on some people?? I'm
                  > confuse..
                  > Lauria
                  >
                  >
                  > [Non-text portions of this message have been removed]
                  >
                  >
                  >
                  > ------------------------------------
                  >
                  > --
                  > NEW!: Rosacea Support Community http://rosacea-support.org/community
                  > Resource Pages: http://rosacea-research.org/wiki
                  > Yahoo! Groups Links
                  >
                  >
                  >
                  >

                  --
                  Maura Anderson - Author of Sensual, Magical, Unconventional Tales
                  Bittersweet -- available NOW from Aspen Mountain Press
                  Escape to Me -- available soon from Ellora's Cave
                  http://www.realmsoftheraven.com

                  [Non-text portions of this message have been removed]





                  [Non-text portions of this message have been removed]
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