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  • Hi, im new to this site as a member but have been looking around the threads for some years now. I decided to actually join because I wanted to have my say on mirvaso. I have been following this treatment for years as im sure have a considerable amount of people on this website. What is happening here is truly WRONG and I feel that as a group of people suffering with this condition the only way we are going to get heard is if we can all agree on this. We all know that this is the truth but for some reason people seem to be getting condemned for stating it on this forum. People who are supposed to be the mediators here are not taking a stand on this and I feel that it is a bit of a cop out. Im very surprised that given the reports we've had on all the rosacea forums there is no one standing up, perhaps a leader figure on these sites and taking some action on this. The reports we should be hearing from a product like this are 'it didn't work for me' not five weeks later im still suffering??? I feel so annoyed when I read these posts and even more annoyed that we seem to be accepting this as ok??? I cant believe they are still planning on releasing it in the uk and again I feel truly sorry for people who have not been reading these forums and are not aware of these terrible side affects.

    Comment


    • Originally posted by jrlhamcat2 View Post
      Thanks for posting. I guess you are in IT.

      Anything else of interest in the database about Mirvaso?
      More of a data-quality role than IT but you're in the right ballpark.
      Not particularly interesting news I admit - just a mention of trials taking place in Russia and Sweden.

      For the other poster, yes it's from the UKMi New Drugs Online Database. Just assuring to know we're looking at a reasonable time-frame on this thing should it be approved. Like I say, i'll keep my eye on it for any changes in status...

      Comment


      • Very Valid Points

        Originally posted by geobiders View Post
        Hi, im new to this site as a member but have been looking around the threads for some years now. I decided to actually join because I wanted to have my say on mirvaso. I have been following this treatment for years as im sure have a considerable amount of people on this website. What is happening here is truly WRONG and I feel that as a group of people suffering with this condition the only way we are going to get heard is if we can all agree on this. We all know that this is the truth but for some reason people seem to be getting condemned for stating it on this forum. People who are supposed to be the mediators here are not taking a stand on this and I feel that it is a bit of a cop out. Im very surprised that given the reports we've had on all the rosacea forums there is no one standing up, perhaps a leader figure on these sites and taking some action on this. The reports we should be hearing from a product like this are 'it didn't work for me' not five weeks later im still suffering??? I feel so annoyed when I read these posts and even more annoyed that we seem to be accepting this as ok??? I cant believe they are still planning on releasing it in the uk and again I feel truly sorry for people who have not been reading these forums and are not aware of these terrible side affects.
        Hi geobiders, your post deserves some recognition from either a moderator or longer standing
        Members regarding the silence I think you hear ( as well as I) re: Galderma's Golden ticket to hell.
        Only they can respond and I hope they do. My take on the silent outrage is a few things: heartbreak
        And disbelief, desire to remain neutral permits hope to prevail for some rosaceans who want to try
        It, it is still so new--- not enough reports yet statistically ( don't need anymore bad reports IMO). And
        Probably there are those that have already moved on: we are looking for something that works and mirvaso
        So REDILY does not. So you want a leader for the RED REVOLUTION ? Hmmmmmm. I think
        So Brady Barrows does a darn fine job.

        What can we do as individuals? As you said, people who are uninformed may head for Red disaster. One
        Idea I had at my derm last week: I informed her of the terrible results from this forum. I gave her
        The web address and threads to read. Redspectfully. Will she read? I hope. Last, I do not believe,
        If you read more posts, " we" as a forum are accepting this situation as okay.". Your anger is one voice of
        Many who are RedMad about fellow sufferers suffering a drug deal gone bad. I'm glad you posted!!!
        Best regards, Birdie

        Comment


        • I know that the OP (David) has been around for a long time on this and other forums. He has always been a good advocate for rosaceans as have other moderators. I was a little surprised that some sided with Galderma reports instead of actual users, but perhaps they did not want to jump to any conclusions and have a knee jerk reaction. Perhaps in time, when there is sufficient data, some others will weigh in. Personally, I have seen enough to know that Mirvaso is probably going to be bad for just about everyone (relative high confidence level). But some people like to have data over extended periods and from multiple sources, which is OK too.

          Comment


          • Originally posted by hozer2k View Post
            I know that the OP (David) has been around for a long time on this and other forums. He has always been a good advocate for rosaceans as have other moderators. I was a little surprised that some sided with Galderma reports instead of actual users, but perhaps they did not want to jump to any conclusions and have a knee jerk reaction. Perhaps in time, when there is sufficient data, some others will weigh in. Personally, I have seen enough to know that Mirvaso is probably going to be bad for just about everyone (relative high confidence level). But some people like to have data over extended periods and from multiple sources, which is OK too.
            Well stated

            Comment


            • Originally posted by hozer2k View Post
              I know that the OP (David) has been around for a long time on this and other forums. He has always been a good advocate for rosaceans as have other moderators. I was a little surprised that some sided with Galderma reports instead of actual users, but perhaps they did not want to jump to any conclusions and have a knee jerk reaction. Perhaps in time, when there is sufficient data, some others will weigh in. Personally, I have seen enough to know that Mirvaso is probably going to be bad for just about everyone (relative high confidence level). But some people like to have data over extended periods and from multiple sources, which is OK too.
              Not being an actual user of Mirvaso myself I can't offer too much expert opinion on its efficacy. I am surprised at the size of the push back against Mirvaso from bad reactions though.

              The official channels are there i.e. report a problem to the FDA and Galderma, and I do hope that everyone who has had a bad reaction will report it.

              If enough reports come in then some sort of official explanation will eventually be required. Who knows, maybe it might even be withdrawn, or perhaps more warnings included in the packaging.

              Remembering that there is solid, verified, blinded, multi-centre, large clinical test data that shows that the vast majority of permanent red faced rosacea sufferers get a good response.

              Any information to the contrary needs to be gathered and reported in detail to be able to mount a big enough argument that something might be wrong because the real world isn't showing the same as the clinical trials.

              Let me throw another thought out there - there might dozens of thousands of happy users out there that we don't hear from. Only Galderma can know how many prescriptions are being filled and how many refunds are being asked for.

              So let me say again, please report any problems you have from your own use of Mirvaso


              To report SUSPECTED ADVERSE REACTIONS, contact Galderma Laboratories, L.P. at 1-866-735-4137 or

              FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
              Get Rosacea News here - https://rosacea-support.org

              Comment


              • Originally posted by David Pascoe View Post
                Remembering that there is solid, verified, blinded, multi-centre, large clinical test data that shows that the vast majority of permanent red faced rosacea sufferers get a good response.
                This is puzzling. That said, I am aware of a few drugs (not rosacea related) that also have great results from studies but real world users have a lot issues with. One in particular has been around quite a while and hundreds of forum users have consistently stated the issues. Who knows where the breakdown occurs, but I do believe it can (and does) occur. I think it is only a matter of time before rosaceans accept there is a breakdown with respect to Mirvaso.

                Let me throw another thought out there - there might dozens of thousands of happy users out there that we don't hear from.
                Maybe, but people LOVE to praise things when they work as well. They are especially inclined to step in when something works for them but forum users are predominately stating it does not. This because of a tendency to defend something that they find beneficial. Rosacea is such a very difficult disease to treat that if people were finding it beneficial, they would be so happy to share their results and encourage others. So where are they? Shouldn't there be at least one by now that says this is great and no rebounds? Just a single person who says it works like it is advertised would mean something. I think if those people existed, they would have been saying so. It is human nature to want to help and share positive experiences. The thing is...they have to actually exist for that to happen. 2.5 months later we have yet to heard of someone who does not suffer rebounds. We have a consensus that this drug causes rebounds. It would appear the active ingredient is simply going to cause rebounds.

                Comment


                • Good posts, Geobiders and responders. I agree with you and am surprised as well that there is such a (relative) laissez-faire mentality towards the rather appaling state of Mirvaso experiences shared here so far. I also think that nobody wants to look and sound like a right pessimist just yet, now that there is still some uncertainty of the actual amount of bad responders to Mirvaso versus those seeing benefit. I am convinced that a good portion of rosacea patients will inevitably face rebound flushing and lets hope I'm wrong, but as long as that is just an assumption, it seems too strong to already write Mirvaso entirely off as a dangerous and useless rosacea treatment. I am convinced it is, or at least for those with reactive and moderate to severe vascular rosacea. But to take these beliefs already out there and actively start protesting against Mirvaso seems too soon perhaps? I certainly don't want to prevent rosacea patients for whom it might work from trying it.
                  Big pharmaceutical companies like Galderma and so many others will not bend or even move from some bad reviews Im afraid. Call me a sceptic but who knows how they and the FDA process and categorize complaints. If its big money making business, people always tend to find their ways to corrupt virtually anything. I think the best way to get this information about the bad rebound issues out there, is to post on forums like these. Anyone understanding the unpredictability of rosacea should read reviews on new treatments anyway before diving into them. Let's hope they end up here.

                  Look, steroids are seriously worsening many cases of rosacea, yet some derms still prescribe it and some people here still advise it to others. There seems no talking to some. Same for high dosis of roaccutane. You post warnings about it one moment and a few months/weeks/days later its already forgotten again when another poster just starts right where you and others left it.

                  I'll be interested to read more user reviews here
                  Last edited by nat007; 8 November 2013, 10:58 PM.
                  My rosacea related blog: http://scarletnat.blogspot.com/2012/...edication.html

                  Comment


                  • Thank you to everyone for their responses. I was wondering if anyone knew weather tests carried out by these large pharm companies are actually overlooked by an impartial body? Do the FDA get involved with this aspect of the tests?

                    Comment


                    • I'm one of the few that seems to have consistently positive experiences with Mirvaso. At least on this forum. Although my dermatologist said she hasn't had any bad reports yet, and she deals with a number of rosacea patients on a regular basis.

                      I have realized, though, that my "baseline" redness level is as bad as what others call flushing. I am never pale. I never just have that slight pink butterfly tinge. I always look like I have a heat rash.

                      When I actually flush, then I look like I'm going to have a heart attack and die. I get the extreme heat sensations as well. Often I body flush too (face, neck, shoulders, top half of arms).

                      I would assume that for more mild/moderate erythema, the response to Mirvaso wearing off (e.g. the blood vessels un-constricting) would be noticeable. For someone like me, a little vessel dilation as Mirvaso fades is lost in the noise.

                      I suspect that Galderma's positive responses came from a carefully selected pool of applicants with baseline redness similar to mine. Rosacea is such a vague and BROAD diagnosis...it is hard to say what kind of people this drug actually works for.
                      Last edited by GreenGables; 10 November 2013, 09:41 AM.

                      Comment


                      • Originally posted by David Pascoe View Post
                        I do find it hard to reconcile why there does seem to be more reports of being worse off with Mirvaso, than loving it. Also I'm not a big conspiracy sort of guy, lots of conspiracy talk you can find is just lazy thinking it seems to me. So my immediate thought is to try to understand what we might be seeing.

                        The trials were blinded, large scale and independently run. How could those trials not match the anecdotal reports here ? I don't know.

                        Just some guesses, I have not tried it myself and likely never will so this is all speculation.
                        • as I've posted before, those who post in online forums might not represent the same statistical variance as the population at large. Thus any results of online polls etc. unless really large are skewed towards online users motivated enough to join forums. We just don't hear from the happy users.
                        • perhaps the trials selected sufferers differently to the general public just asking for Mirvaso. Although the trials didn't (seem) to identify non permanent-red-facers (i.e. controls) who had to stop Mirvaso, could it be that there are some people for whom it is not best used? Perhaps really only permanent red face sufferers will see the best result/reaction outcomes.
                        • skincare and treatment for the most sensitive skin sufferers is complicated. As everyone knows there are so many factors as to why in some cases skin reacts seemingly differently to one thing one day and not the next. Perhaps there is still a best way to use it that some users haven't discovered yet.


                        I didn't set out to make a convincing list, so everyone feel free to continue to speculate themselves I just don't buy into the theory that Mirvaso was a known disaster and has been rushed through the FDA just to make money. The FDA is there to stop that, so that theory is highly unlikely.
                        I concur. Obviously Galderma couldn't have got past the FDA approval knowing that it doesn't work. It must work for some, as other prescription treatments work for some. Those who experience good results from Mirvaso will not be posting in this forum or any other rosacea forum since they went their happy way with a successful treatment. That doesn't mean that these ones won't have long term effects with Mirvaso, and we probably will be hearing from these ones much later as they Google Mirvaso along with the words 'rebound, bad effects, risks,' etc., and find this forum.

                        Comment


                        • Sadly, I'm going to have to add my experience to the negative reviews, which is a shame, because I had a lot of hope for this.

                          I used this for two weeks. The first few days when I was using the sample, it seemed to work really well. It cleared up the redness, and whatever rebound there was wasn't really enough for me to notice. I got myself a tube of the stuff thinking I had something that really worked. However, it didn't take long, and I started noticing my rebounds. They would get worse each time. It got to a point where my nose and cheeks got super bright red, redder than my normal flushing ever gets. I decided to do some research to see if I should continue using the cream or not. After reading the overwhelmingly negative responses on here, I decided to stop. It's been a week since I've stopped using the cream. My face isn't as bad as that last flush I had, but it's definitely still more red than it was when I first started using Mirvaso.

                          I'm really sad about this, you guys; the first few days gave me so much hope. Now I'm just hoping that my base redness doesn't stay like this, and goes back to what it was prior to using the cream. :\

                          I made a report to the FDA. http://www.fda.gov/Safety/MedWatch/H...rt/default.htm
                          Last edited by MsQuinzel; 12 November 2013, 07:19 PM.

                          Comment


                          • Whew! I went through the 80 pages of this thread and here are the official results so far (and searching in some other threads):

                            3 Positive Reports
                            19 Negative Reports

                            You can read all of them by clicking here.

                            Now this isn't a clinical study which is what Galderma did. And factoring in that those who have positive experiences with any rosacea treatment are not likely to come to this forum or any other rosacea forum because the treatment works for them and there is no need to search or post, this only means that we have a few reports gathered so far that if you decide to accept Mirvaso treatment be aware of the possible risks which Galderma clearly warns every patient about. Just about all pharmaceutical treatments have potential risks and side effects and when you pick up the prescription you are warned about these with the product insert. If you accept the treatment you are responsible for the consequences. This thread is more about ranting on Galderma which has products specifically to treat rosaceans. To expect a prescription drug to successfully treat all rosacea cases is naive. Oracea, which is reported in this forum to be a successful treatment for rosacea, which Galderma also produces, has probably way more negative reports than Mirvaso has received so far and there is no recorded ranting and disparaging remarks about Galderma in those threads. What we want is for Galderma to continue to offer more products to treat rosacea and badgering this pharmaceutical giant will get you no where.

                            I will continue to update my page on Mirvaso and could use some help. Please join the RRDi and help.

                            Comment


                            • Originally posted by Brady Barrows View Post
                              Whew! I went through the 80 pages of this thread and here are the official results so far (and searching in some other threads):

                              3 Positive Reports
                              19 Negative Reports

                              You can read all of them by clicking here.

                              Now this isn't a clinical study which is what Galderma did. And factoring in that those who have positive experiences with any rosacea treatment are not likely to come to this forum or any other rosacea forum because the treatment works for them and there is no need to search or post, this only means that we have a few reports gathered so far that if you decide to accept Mirvaso treatment be aware of the possible risks which Galderma clearly warns every patient about. Just about all pharmaceutical treatments have potential risks and side effects and when you pick up the prescription you are warned about these with the product insert. If you accept the treatment you are responsible for the consequences. This thread is more about ranting on Galderma which has products specifically to treat rosaceans. To expect a prescription drug to successfully treat all rosacea cases is naive. Oracea, which is reported in this forum to be a successful treatment for rosacea, which Galderma also produces, has probably way more negative reports than Mirvaso has received so far and there is no recorded ranting and disparaging remarks about Galderma in those threads. What we want is for Galderma to continue to offer more products to treat rosacea and badgering this pharmaceutical giant will get you no where.

                              I will continue to update my page on Mirvaso and could use some help. Please join the RRDi and help.
                              Are you serious? Did you really just scold the people who have had their emotions toyed with by expert marketing manipulators who took people on an emotional roller coaster for years, as they baited their hooks with well placed press releases and internet "rumors" about this miracle drug, until people were begging, no, demanding that they have access to this medication, only to come away from their first attempts at using it with what appears to be a worsened situation and dashed hopes? Every step of this game is played by the Big Boys and they don't mess around. They spend money on professionals who know how to "manage" humans through their deep primal fears and needs. Core primitive drives are played and played like a maestro. No one is immune. Dirty tricks like making something hard to get and rare, hinting for years that a product is on the way, like deeply establishing that "they" are the experts and the uneducated lowly masses have no idea what they might be talking about and how dare you lowlies question them.. etc.. etc.. ANYTHING to engender emotionality and childhood states of mind, and leave rational assessment behind because when you are in your primal brain, they win.

                              This stuff has been studied and deployed since the turn of the last century.. They know what they are doing and it works very well. The Delphi Technique .... Edward Bernays and the Art of Public Manipulation - video

                              You are however right that, "If you accept the treatment you are responsible for the consequences." No one else has to live with and suffer with them.

                              Comment


                              • Originally posted by Brady Barrows View Post
                                Whew! I went through the 80 pages of this thread and here are the official results so far (and searching in some other threads):

                                3 Positive Reports
                                19 Negative Reports

                                You can read all of them by clicking here.

                                Now this isn't a clinical study which is what Galderma did. And factoring in that those who have positive experiences with any rosacea treatment are not likely to come to this forum or any other rosacea forum because the treatment works for them and there is no need to search or post, this only means that we have a few reports gathered so far that if you decide to accept Mirvaso treatment be aware of the possible risks which Galderma clearly warns every patient about. Just about all pharmaceutical treatments have potential risks and side effects and when you pick up the prescription you are warned about these with the product insert. If you accept the treatment you are responsible for the consequences. This thread is more about ranting on Galderma which has products specifically to treat rosaceans. To expect a prescription drug to successfully treat all rosacea cases is naive. Oracea, which is reported in this forum to be a successful treatment for rosacea, which Galderma also produces, has probably way more negative reports than Mirvaso has received so far and there is no recorded ranting and disparaging remarks about Galderma in those threads. What we want is for Galderma to continue to offer more products to treat rosacea and badgering this pharmaceutical giant will get you no where.

                                I will continue to update my page on Mirvaso and could use some help. Please join the RRDi and help.
                                Hi Brady, thank you for doing this work. Essentially I agree with your assessment of the responsibility
                                On the part of the user of prescription drugs. It is essential to be informed of side effects and risk. I'm
                                Not sure though if the comparison of Oracea and mirvaso is a balanced one in this case. While oracea
                                Aggravated some users gut flora or simply did not work, mirvaso's side effects is revealed directly
                                On the face-- making the rosacea/flushing worse than baseline. And, only time will reveal if the damage
                                Done is irreversible or not. Best regards, birdie

                                Comment

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