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  • Originally posted by nat007 View Post
    Yeh but there is quite some antagonism going on there too Brady, I'd say more than around here and another thing I noticed; the approach there is a bit different from here. Not better or worse, but I see a lot more emphasize on natural treatment options (which is great) but not as much on scientific approaches; some ladies promoting bleach on their faces and pesticides and when you warn and say pls be careful you are a bit of a party pooper, or so it felt to me. I wouldn't say it is an upgrading to this forum, this is still the number one Rosacea place to be as far as I am concerned, but it's good that there is diversity. But yeh facebook has a few rosacea groups actually, and since most people post with their own facebook account, I found the atmosphere to be strangely enough more antagonizing at times. Or maybe that is just because I say opposing stuff and give opposing opinions now and then, not sure if it is partly because of my own approach perhaps. But, more information can be found there.

    Brady for our Mirvaso lists, there is a problem with the Mirvaso testimonials on these closed of rosacea groups on facebook, as you have to be a member to view them and that means we can't link to them in our lists. I am still in limbo about adding their testimonials or not, as we can't link. Curious about your thoughts on this?
    Ok. I joined to browse the posts there and did a cursory look and discovered David Pascoe joined too. Couldn't find your posts but I really didn't take the time to do a real search. I agree with you that since it is impossible to link to a post about Mirvaso one way or the other I am not going to add any of their private posts to any of my lists.

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    • I used my fb account 'Scarlet Red' there Brady
      My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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      • I'm reading on that same fb forum now that there are tests done with a cream similar to Mirvaso by the company Allergan. It is supposed to be without the Mirvaso rebound. A member there posts her experience with it as she is in the test group. She can't say why this test product is able to counteract the rebound problems whereas Mirvaso isn't, but lets hope she is right and this new product will give some better results than Mirvaso has so far..

        This is some more info on the product trials: http://rosacea-support.org/allergans...r-redness.html
        Sorry if there have already been posts here on the forum on this
        My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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        • Interesting! As the article says, they're mindful of the poor reports on Mirvaso. So surely they wouldn't put out a product that has the same rebound problem. Though who knows! Curious that they're using the ingredient in Affrin - which has the rebound problem. Wonder how they would get around that?

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          • I have no idea how they could.. The person on this private forum shares pictures and she seems to do ok, but I also see some red pics of her now and then and when people ask how this new product prevents rebound, where Mirvaso can't, she says she doesn't know. Being in a test group, they don't give her too much information.

            This is a quote from that link in my previous post:
            "Oxymetazoline is the active ingredient in decongestant products like Afrin, Sudafed OM and Vicks Sinex as well as in eye drops like Visine LR.
            A well known side effect of Visine is rebound redness, where continued use leads to the redness that you were originally treating. Extended usage of Afrin can also lead to rebound nasal congestion.
            "

            No idea yet how they will counteract it, but I'm skeptical..
            My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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            • Yes, unfortunately, we've seen by way of Mirvaso that companies can get drugs to market that don't work. Kind of gives the other pharmas the impetus to do the same. Let's hope Allergan will deliver something that works and does no harm.

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              • Yeh I agree, would love to have a cream that makes you pale all night, just go out and dance again
                Fingers crossed they take a good look at what went wrong with Mirvaso/Galderma and do it better this second time around.
                My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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                • Originally posted by nat007 View Post
                  Yeh I agree, would love to have a cream that makes you pale all night, just go out and dance again
                  Fingers crossed they take a good look at what went wrong with Mirvaso/Galderma and do it better this second time around.
                  Here we go again Nat . Lets all get our hopes up . To be let down again .

                  Rebound and Rosacea are part and parcel .

                  Theres always going to be Rebound for Rosacea / Flushers .

                  Sun, Alcohol, Cold .Creams

                  So no matter what your face comes in contact with . theres always going to be a element of rebound

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                  • Originally posted by davekelly View Post
                    Here we go again Nat . Lets all get our hopes up . To be let down again .

                    Rebound and Rosacea are part and parcel .

                    Theres always going to be Rebound for Rosacea / Flushers .

                    Sun, Alcohol, Cold .Creams

                    So no matter what your face comes in contact with . theres always going to be a element of rebound
                    I know Dave.... I'm beyond skeptical to be honest but just don't want to sound like a right grump, ditching everything before it came out of the test phase already.
                    But I'd be very surprised too if they tackled the rebound, not just for some mild rosaceans but for the whole spectrum of rosaceans using it.
                    Sure, there is always rebound at play for us, but most don't get it from a neutral moisturizer. It's the chemical constriction of blood vessels which these new creams tend to cause,
                    and the disproportionate rebound you get as a return; the further you stretch the elastic the more forceful it will snap back, or something along those lines
                    Still hope this cream will be different, but with the same reserve as you
                    My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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                    • Originally posted by nat007 View Post
                      I know Dave.... I'm beyond skeptical to be honest but just don't want to sound like a right grump, ditching everything before it came out of the test phase already.
                      But I'd be very surprised too if they tackled the rebound, not just for some mild rosaceans but for the whole spectrum of rosaceans using it.
                      Sure, there is always rebound at play for us, but most don't get it from a neutral moisturizer. It's the chemical constriction of blood vessels which these new creams tend to cause,
                      and the disproportionate rebound you get as a return; the further you stretch the elastic the more forceful it will snap back, or something along those lines
                      Still hope this cream will be different, but with the same reserve as you
                      The only cure I can see for Redness and Flushing [ Rosacea /KPRF ] will only come from a Laser

                      But this laser hasn't been invented yet . A laser that actually removes all redness and brings your skin back to the way it used to be .

                      The way I look at it no redness = no flushing

                      As I said before we are still about 10 years away from a cure .

                      Magic Creams are never going to work .
                      davekelly
                      Senior Member
                      Last edited by davekelly; 16 August 2014, 09:55 PM.

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                      • Laser is russian roulette unfortunately. Works for many and makes some worse. And when it does, there is no way back.
                        They really should work on one which cuts back this risk drastically... Another ten years, lets hope
                        My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

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                        • TV Show - Mirvaso Negative Side Effects

                          Don't know if anyone saw this but there is a programme broadcast here in the UK called 'My Naked Secret', in a nutshell its a programme focusing on people with embarrassing and hidden medical conditions. The programme is broadcast on the TV Channel TLC, which I think is only available on satalite over here e.g. sky.

                          Anyways there was an episode relating to a female that suffers from Rosacea (seemed to be subtype 2). The show follows the female receiving psychological support from a psychologist and attending at a clinic to receive medical treatment for the condition. To cut a long story short she is prescribed Mirvaso and it is built as a brand new rosacea treatment and she is the first patient in Europe to try it, presumably the episode was filmed a few months ago. The doctor is clearly seen giving her Mirvaso in the episode, however she reported that she experienced worsening rebound flushing with continued use so had to discontinue the use of Mirvaso like many of us on here! On the episode they show a couple of photos showing the rebound flushing. I personally am quite pleased, in a way that the producers of the show did not mislead viewers and the true reaction of the female patient was highlighted and shown.

                          The episode is still available on Sky on demand for all the UK members!

                          I remember I applied to go onto this show about 12 months ago, as the production company had appealed for people suffering with skin conditions to audition. I went through part of the auditioning process but pulled out when they started mentioning that they would need to interview my family and friends as part of the auditioning process. I'm glad I didn't go through with it now, as I have tried Mirvaso myself and experienced the rebound flushing!

                          Will try and see if the episode is available online for non-UK members, in the meantime here is a link to the programmes website (Episode 7 - Anna):

                          http://www.uk.tlc.com/shows/my-naked-secret/episodes/

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                          • Originally posted by roasceaclearwannabe View Post
                            Don't know if anyone saw this but there is a programme broadcast here in the UK called 'My Naked Secret', in a nutshell its a programme focusing on people with embarrassing and hidden medical conditions. The programme is broadcast on the TV Channel TLC, which I think is only available on satalite over here e.g. sky.

                            Anyways there was an episode relating to a female that suffers from Rosacea (seemed to be subtype 2). The show follows the female receiving psychological support from a psychologist and attending at a clinic to receive medical treatment for the condition. To cut a long story short she is prescribed Mirvaso and it is built as a brand new rosacea treatment and she is the first patient in Europe to try it, presumably the episode was filmed a few months ago. The doctor is clearly seen giving her Mirvaso in the episode, however she reported that she experienced worsening rebound flushing with continued use so had to discontinue the use of Mirvaso like many of us on here! On the episode they show a couple of photos showing the rebound flushing. I personally am quite pleased, in a way that the producers of the show did not mislead viewers and the true reaction of the female patient was highlighted and shown.

                            The episode is still available on Sky on demand for all the UK members!

                            I remember I applied to go onto this show about 12 months ago, as the production company had appealed for people suffering with skin conditions to audition. I went through part of the auditioning process but pulled out when they started mentioning that they would need to interview my family and friends as part of the auditioning process. I'm glad I didn't go through with it now, as I have tried Mirvaso myself and experienced the rebound flushing!

                            Will try and see if the episode is available online for non-UK members, in the meantime here is a link to the programmes website (Episode 7 - Anna):

                            http://www.uk.tlc.com/shows/my-naked-secret/episodes/
                            Wow great to see the struggles of us rosaceans being beamed on TV! I wouldn't touch Mirvaso with a bargepole! I do think the UK is quite ahead of others in portraying the suffering of rosaceans: Daily Mail (not my fav news source by any means) did many exposes on rosacea and rhinophyma treatment which were interesting.

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                            • Originally posted by roasceaclearwannabe View Post
                              Don't know if anyone saw this but there is a programme broadcast here in the UK called 'My Naked Secret', in a nutshell its a programme focusing on people with embarrassing and hidden medical conditions. The programme is broadcast on the TV Channel TLC, which I think is only available on satalite over here e.g. sky.

                              Will try and see if the episode is available online for non-UK members, in the meantime here is a link to the programmes website (Episode 7 - Anna):

                              http://www.uk.tlc.com/shows/my-naked-secret/episodes/
                              Would love to see it if anyone ever gets hold of a copy !

                              thanks,
                              davidp.
                              Get Rosacea News here - https://rosacea-support.org

                              Comment


                              • If anyone cares, I finally experienced the rebound redness.

                                I used Mirvaso consistently for a few months with no side effects. I returned to my baseline redness after 6-8 hours, but no crazy flushing. Stopped using it after a while because 6-8 hours is not enough for a full day redness coverage. It doesn't work as well if you reapply at the end of the day. So if I really needed to cover up my red face I was better off with makeup.

                                Pulled it out again this month because my baseline redness had improved, and I felt like I could deal with Mirvaso instead of a full face of makeup. The third day I used it I got a TERRIBLE red flush as it wore off. The places that were reddest were the places that were normally the most pale. You could clearly see the outline of where I had applied the cream on my face that morning. It took 3-4 days for the flush to go down. So...Mirvaso is out.

                                Disappointing. It worked well for quite a while. Not sure what tripped the wire.

                                All you naysayers can say I told you so.

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