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Originally posted by geobiders View PostI have been reading that Galderma are actually one of the largest sponsors of the National Rosacea Society and also are funding the research in to Neuropeptide PACAP modulators for rosacea. Initially I felt very angry with Galderma over Mirvaso but with these other points in mind I think its fair to say that they are on our side.
Im just don't understand why they did not spend their money on something more viable than Mirvaso. They must have known even though their test results don't show it that this rebound issue is going to deter many away from this product. The PACAP research looks like the most promising research for the future treatment of rosacea, treating the problem at the source. I hear is costs up to 900 million to get drugs FDA approved, shame they did not invest the money in some modern technology like PACAP. The unfortunate thing is that as much as we are annoyed with Galderma if they loose too much money with Mirvaso it may actually hinder the company from developing future treatments like this.
Interesting point. Its great of Galderma that they sponsor rosacea research. Hope they keep doing that. I wished they had made a great new product to combat the rosacea flushing and its great that it helps a group of patients, but when people report they get worse from it, that is serious. Like with accutane, it works well for a lot of (acne)patients but when you read the posts from rosacea patients who developed sometimes debilitating rosacea after using accutane, that's serious and tragic for the small % who affects this. Their aim must be the produce profit making medication I reckon, to keep their company viable, and when things go well they can sponsor independent rosacea research. So it makes sense that they opt for a 900 million (wow really??) costing FDA procedure instead of giving it away for research. I hope the company doesn't go down and money will keep flowing to research but things are not going at a very fast pace the past decades
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"The next morning I went to my doctor",
You could setup the appointment that fast. That is impressive.
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Mirvaso Issues!
I have controlled my rosacea (for the most part), for some time, through diligent use of gentle products, mineral sunscreens, an occasional use of a sulfur based wash, and avoiding triggers-lets just say keeping rosacea controlled becomes a part of life. I was at my Dermatologist a few weeks ago, and she was excited to let me know about Mirvaso, and honestly I was as well from what she said. I read all the information, and tried a spot test, and it was good, no “rebounding” effect. I used for two days only, on the following day I decided not to use. After about an hour, my face was warm, and then hot really painful, red blotches, and it persisted for hours and by the late evening had calmed to a sunburn look. The next morning I went to my doctor, she said she is now hearing the same “rebound” effects from her other patients. I asked her why Galderma would keep it on the market and that I thought it should be pulled, and she agreed and said it probably will be taken off the market. I’m on day 4 since I stopped and every day at the same time it happens, and I’m concerned there will be permanent damage-this has been a huge set back.
I wish I never took Mirvaso, and in my opinion these short terms results do not merit the potential long term problems-no one should take this medication ever. I read here that others had similar experieces and I wish that we all can revert back to the baseline of skin that is healthy, and leave this episode behind us.
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Originally posted by geobiders View PostI have been reading that Galderma are actually one of the largest sponsors of the National Rosacea Society and also are funding the research in to Neuropeptide PACAP modulators for rosacea. Initially I felt very angry with Galderma over Mirvaso but with these other points in mind I think its fair to say that they are on our side.
Im just don't understand why they did not spend their money on something more viable than Mirvaso. They must have known even though their test results don't show it that this rebound issue is going to deter many away from this product. The PACAP research looks like the most promising research for the future treatment of rosacea, treating the problem at the source. I hear is costs up to 900 million to get drugs FDA approved, shame they did not invest the money in some modern technology like PACAP. The unfortunate thing is that as much as we are annoyed with Galderma if they loose too much money with Mirvaso it may actually hinder the company from developing future treatments like this.
And do you think that it may be possible for doctors to eventually discover that the rebound effect is something to consider before prescribing Mirvaso? I think they will eventually know more about this and explain carefully to each patient after handing them a sample that if they experience rebound to stop using it or to modify its use. A significant number of rosacea patients will use Mirvaso for years just as a significant number use accutane.
Accutane users have been reporting for some time now that it causes similar if not worse results yet millions of prescriptions are continuing to be used by acne and rosacea sufferers. Accutane is still be used and discussed. No one knows the percentage of users who experience accutane induced rosacea. There hasn't been any studies done on this. Only reports in the forums about it.
Mirvaso will continue to be used in greater numbers and we will probably see similar results. And Galderma will continue to donate a significant amount of money to the NRS as they have been doing this for years. Very few rosacea sufferers care how Galderma or the NRS spends it money. I do care and have been explaining for years how the NRS spends its money and most simply don't care. Galderma doesn't care how the NRS spends its money either.Last edited by Brady Barrows; 15 December 2013, 05:32 PM.
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I have been reading that Galderma are actually one of the largest sponsors of the National Rosacea Society and also are funding the research in to Neuropeptide PACAP modulators for rosacea. Initially I felt very angry with Galderma over Mirvaso but with these other points in mind I think its fair to say that they are on our side.
Im just don't understand why they did not spend their money on something more viable than Mirvaso. They must have known even though their test results don't show it that this rebound issue is going to deter many away from this product. The PACAP research looks like the most promising research for the future treatment of rosacea, treating the problem at the source. I hear is costs up to 900 million to get drugs FDA approved, shame they did not invest the money in some modern technology like PACAP. The unfortunate thing is that as much as we are annoyed with Galderma if they loose too much money with Mirvaso it may actually hinder the company from developing future treatments like this.Last edited by geobiders; 15 December 2013, 03:13 PM.
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Originally posted by johnabetts View PostSee post #4 in this thread http://www.rosaceagroup.org/The_Rosa...ial-Oil-Remedy
score now is 16 Positive and 54 Negative
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Mary Stockinger is mentioned again in a similar report on WCBS, New York: http://newyork.cbslocal.com/2013/12/...acea-patients/
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blacksmith, I think it would be best to send you a private message since this is off topic.
I have been getting links to other Mirvaso reports to other sites which require a lot of careful reading to add them to my list. I have decided that a spreadsheet would be more conducive to making the list and divided this into two spread sheets, one for positive which still stands today at 14 and one negative which stands today at 41.
It would be such a nice gesture for someone who knows spreadsheets to assist in this search and careful placing of anecdotal reports with the date of the post, display name of the poster, the actual post and the link to the post. As everyone is so busy I understand that this is a lot to ask but please let me know if you can assist. Also the ones I listed in the spreadsheets while adding them I discovered one poster the link is no longer working so I eliminated this post. It was for imgar. I will add more reports when I have the time.
If you want to help, it is a Google Spreadsheet and can be worked with others as a team. Google has made collaboration on a document the standard that others are imitating. If you are not aware of how this is done watch this short video:
Here are links to the reports:
Positive
Negative
If you want to be on the team let me know in a private message. Thanks.Last edited by Brady Barrows; 13 December 2013, 06:27 PM.
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Originally posted by Brady Barrows View PostThis is getting overwhelming trying to compare all these different lists. I am going to think of a different method where we can all collaborate on the same list using Google Spreadsheets. This will take some time to set up, but I will let you know.
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Ok Brady, in the mean time I'll keep checking the apprx. 10 websites we know to contain Mirvaso reviews, and check them daily for new ones, and keep searching for new websites where reviews appear. Trying to keep up to date so in the new spreadsheet you can use the updated lists too. I used yours as a base, so thats the big chunk still at the moment.
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Originally posted by nat007 View PostNot sure rosaceawannabeclear, I hope Brady or someone else can comment on your video.
I found more reviews on Mirvaso here, below this post from David Pascoe http://rosacea-support.org/mirvaso-r...-the-news.html
Not sure they are already on your list Brady, I added them on mine here http://scarletnat.blogspot.fr/2013/1...responses.html
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Not sure rosaceawannabeclear, I hope Brady or someone else can comment on your video.
I found more reviews on Mirvaso here, below this post from David Pascoe http://rosacea-support.org/mirvaso-r...-the-news.html
Not sure they are already on your list Brady, I added them on mine here http://scarletnat.blogspot.fr/2013/1...responses.html
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