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  • Update on Anecdotal Reports

    With a little help from Al and Natalja I have revised the update due duplicates these two found. So the revised list now shows:

    28 Positive
    71 Negative

    I would love to give editing privileges to anyone who wants to help with this list. Wouldn't it be great if a bunch of rosacea sufferers got together and worked on projects like this and tried to help fellow rosacea sufferers? Wow, a non profit organization actually exists with this sole purpose but it is difficult to get volunteers to help. As with most activities in life, most people want money to actually do work. Volunteering isn't for everyone. But if you have the volunteer spirit which was at the heart of why the RRDi was formed, please let me know. I could use some help.
    Brady Barrows
    Blog - Join the RRDi


    Comment


    • I guess the question is how far do you want to go with this? Is there really much of a point now?

      28 positive, 71 negative tells the whole story.

      If you break it down further, of the 28 positive only a handful of those are confirmed positives (long term positive results). The others are only reported positive because they were initial reports (without later updating about the rebound) or that they cut it with steroids or antihistamine. Filtered down to long term regular use (as directed by Galderma), there are just a few people (out of about 100) that it actually worked for.

      I mean, we can keep collecting data, etc. but how much more value would that really add? There are plenty of data points to make an informed decision.

      Comment


      • Originally posted by wiry View Post
        I guess the question is how far do you want to go with this? Is there really much of a point now?

        28 positive, 71 negative tells the whole story.

        If you break it down further, of the 28 positive only a handful of those are confirmed positives (long term positive results). The others are only reported positive because they were initial reports (without later updating about the rebound) or that they cut it with steroids or antihistamine. Filtered down to long term regular use (as directed by Galderma), there are just a few people (out of about 100) that it actually worked for.

        I mean, we can keep collecting data, etc. but how much more value would that really add? There are plenty of data points to make an informed decision.
        I agree that the numbers coming in initially should give some indication of what is actually happening. It is interesting to note what is written in the clinical study done on Mirvaso according to the product insert:

        "14 CLINICAL STUDIES MIRVASO topical gel was evaluated for the treatment of moderate to severe, persistent (nontransient) facial erythema of rosacea in two randomized, double-blind, vehicle-controlled clinical trials, which were identical in design. The trials were conducted in 553 subjects aged 18 years and older who were treated once daily for 4 weeks with either MIRVASO topical gel or vehicle. Overall, 99% of subjects were Caucasian and 76% were female. Baseline disease severity was graded using a 5point Clinical Erythema Assessment (CEA) scale and a 5-point Patient Self Assessment (PSA) scale, on which subjects scored either “moderate” or “severe” on both scales."

        According to Med Library the clinical study involved 330 subjects:

        "During clinical trials, 1210 subjects were exposed to MIRVASO topical gel. A total of 833 subjects were treated for persistent (nontransient) erythema associated with rosacea, and 330 of those were treated once daily for 29 days in vehicle-controlled trials."

        It is so difficult to understand how that many rosacea sufferers were treated with Mirvaso during the clinical trials and didn't receive the results that are being reported all over the internet. And where are the positive reports? Why are they so few?
        Brady Barrows
        Blog - Join the RRDi


        Comment


        • Yeh I agree, until we reach the 1210 user reviews, mirroring the test group numbers, I´ll keep counting and adding them to the Mirvaso review list (both available on my blog and Brady´s spreadsheet list). `There are plenty of data points to make an informed decision.` Uhm not really. Apart from shattered news articles with shattered user reviews over the net, and only about 14 that I found so far, often difficult to find. The info which is ´plenty´ and easy to find is the Galderma manual and good result stats, not this type of well rounded, actual relevant info. Of the almost 102,000 viewers of this thread I am sure some like to keep up to date with the scores of positive versus negative reports, as they are in such ridiculous stark contrast with Galderma´s test numbers?
          My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

          Comment


          • Hi was just googling Mirvaso and came across these user comments regarding the drug:

            http://www.justanswer.com/dermatolog...-s-pretty.html

            Comment


            • Originally posted by roasceaclearwannabe View Post
              Hi was just googling Mirvaso and came across these user comments regarding the drug:

              http://www.justanswer.com/dermatolog...-s-pretty.html
              Thanks! Not sure... this person didn´t seem to suffer from flushing and redness of the skin, he/she only describes sudden acne like pimples? But it makes a positive review nevertheless I guess, thank for linking it
              My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

              Comment


              • Yea I did think that too!

                I just wanted to ask about Mirvaso, as it seems that it is highly likely its going to arrive here in the UK within the next couple of months, if I want test if I am allergic to the brimonidine would I react regardless of where I applied the Mirvaso e.g. to my arm? I am dying to know if the NHS are going to supply this drug!


                Thanks

                Comment


                • According to Anna Holmes PhD allergic testing is done with a patch test. There is a difference between an allergic reaction to brimonidine and rebound. See posts #s 6 & 9 here:


                  http://members.rosacea-research-and-...dpost__p__2280
                  Brady Barrows
                  Blog - Join the RRDi


                  Comment


                  • Originally posted by nat007 View Post
                    Yeh I agree, until we reach the 1210 user reviews, mirroring the test group numbers, I´ll keep counting and adding them to the Mirvaso review list (both available on my blog and Brady´s spreadsheet list). `There are plenty of data points to make an informed decision.` Uhm not really. Apart from shattered news articles with shattered user reviews over the net, and only about 14 that I found so far, often difficult to find. The info which is ´plenty´ and easy to find is the Galderma manual and good result stats, not this type of well rounded, actual relevant info. Of the almost 102,000 viewers of this thread I am sure some like to keep up to date with the scores of positive versus negative reports, as they are in such ridiculous stark contrast with Galderma´s test numbers?
                    Well, internet user reviews will never yield results comparable to a controlled study. About all you can do is subjectively assess results based on user reviews. There is nothing special about 1210 that would yield a direct comparison. 100 data points is pretty darn good for an internet subjective analysis. Do you really think results will change? They were pretty consistent at 10, 20, 50, 100 data points. That trend is not likely to change. The subjective result will be the same : that Mirvaso generally does not work for real world users (at least as prescribed).

                    So while you can continue to go to 1210 user reviews, I really doubt much will change. It just seems like a lot of wasted energy that would be better spent on other things (just my opinion). For example, the use of non prescription products (topicals and supplements) is not well documented on the forum (everything is so hap hazard). Why not try to make effort trying to organize that information instead of beating a dead horse (Mirvaso).

                    Comment


                    • I agree. There are so many other Rosacea treatments that need to be reviewed and analyzed by anecdotal reports in a list just as we have done with Mirvaso. How do you get volunteers to work together on a project? We have the means to collaborate together as a team on a spreadsheet. However getting the team together to work on a spreadsheet is the issue.
                      Brady Barrows
                      Blog - Join the RRDi


                      Comment


                      • I wasn´t entirely serious about gathering exactly 1210 reviews. But it´s easy and not very time consuming to update the list with new reviews at the moment. Takes not more than 20 minutes per day at this point so don´t see it as a waste of energy just yet. Not sure about Brady´s site but I did make inventories of natural anti inflammatory supplements on my blog.
                        The problem with them is that rosaceans react wildly different to them. Take fish oil; some swear by it, others (me too) get crazy flushing from it because of the high histamine levels. Quercetin and bromelain: a friend has his rosacea under control with it, I was badly flushed and inflamened for a week every time I tried it. It makes no sense. Idem. for something like Boswellia. Apart from making lists of natural anti inflammatory products that are out there and linking to those with positive and negative experiences I don´t really see what more we can do? Curious about your ideas though.
                        My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

                        Comment


                        • I used Mirvaso

                          Today was the first time I have tried mirvaso. Previously, I have tried metrogel, finacea and a dozen other treatments for my rosacea and nothing worked. My entire face is red, not just the nose and cheeks. It is also normally irritated and painful. 30 minutes after mirvaso, I looked like a ghost. Pale white. Like I said, it's the first use but so far I'm ecstatic about it. I still have the irritation and burning which my dermatologist is trying to solve but I hope this is the cure for looking like a lobster. It is a little pricey but ask for samples if nothing else has worked for you.

                          Comment


                          • Originally posted by AndyC View Post
                            Today was the first time I have tried mirvaso. Like I said, it's the first use but so far I'm ecstatic about it. ..but I hope this is the cure for looking like a lobster.
                            Andy, what you are experiencing is normal and occurs for everyone that tries Mirvaso. Initially, it works for everyone. But if you dig a little deeper, there is a very high probability that your symptoms will worsen over time (also known as rebound). Once the Mirvaso wears off, the redness will come back with a vengeance. Eventually more and more Mirvaso will not be able to contain it and you will have made your problem worse off. This is a sad, but realistic, outcome if you continue to use it.

                            Comment


                            • Originally posted by AndyC View Post
                              Today was the first time I have tried mirvaso. Previously, I have tried metrogel, finacea and a dozen other treatments for my rosacea and nothing worked. My entire face is red, not just the nose and cheeks. It is also normally irritated and painful. 30 minutes after mirvaso, I looked like a ghost. Pale white. Like I said, it's the first use but so far I'm ecstatic about it. I still have the irritation and burning which my dermatologist is trying to solve but I hope this is the cure for looking like a lobster. It is a little pricey but ask for samples if nothing else has worked for you.
                              AndyC,

                              Be sure and come back in 30 days and let us know how you feel about Mirvaso and if you are still using it. Keep us informed, please. As Wiry, points out, not everyone is happy with Mirvaso and if you can go through this 114 page thread you will see the reports.
                              Brady Barrows
                              Blog - Join the RRDi


                              Comment


                              • WNYT Albany, NY

                                Another news report from WNYT Albany, NY

                                http://www.clipsyndicate.com/video/p.../17047/4854533

                                or

                                http://wnyt.com/article/stories/S3265497.shtml?cat=300
                                Brady Barrows
                                Blog - Join the RRDi


                                Comment

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