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Thread: neurogenic rosacea -- my battle.

  1. #61
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by antwantsclear View Post
    Are you taking cymbalta instead of mirtazapine? One of the reasons I stopped taking mirtazapine was hair loss - have never had a problem again with this since I stopped it.
    I take both.

    If I go down on either the flushing increases significantly and returns on my arms, torso, etc.

    I haven't noticed hair loss side effect personally.

  2. #62
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Rubydo1 View Post
    Hi I joined and I’m in awe of the work you do, but I’ll be honest and tell you why I don’t visit.
    It’s the website I find it not very user friendly. Have you thought about linking to Instagram and Facebook.
    If you use Instagram you could link to etsy to sell or raise money for rosacea research.
    And maybe also Seborrhoeic Dermatitis research as I find it incredible that no one has developed a face treatment that doesn’t involve harsh chemicals. Washing your face with shampoo is impossible if you have extremely sensitive skin.
    But I truly think you need to use a different platform.
    The history of the RRDi goes a while back to 2004 when the owner of RF at that time was Warren Stuart who recommended we setup the RRDi forum using Invision Community instead of vBulletin. It would be good to understand why in detail you are able to post freely here at RF using vBulletin and find Invision Community 'not very user friendly'? I don't see much difference to me. The forum is found here:

    https://irosacea.org/forums/

    On our website which includes many pages, which members are not allowed to post comments on pages, it also includes an affiliate store, which at the present, we can't allow members to rate a product or comment since the RRDi is not selling anything but is generating a small amount of income for our non profit. We know that many thousands are viewing our website since we get a Google Analytics report that 4.3K users visited last month in January which is a typical report.

    I wish we could make our website more 'user friendly' but since our funds are very low right now, we may simply have to close up shop and let the RRDi disappear since basically volunteering has dramatically dropped recently and rosaceans don't care if the RRDi shuts down. It does cost money to keep a rosacea database of information like RF has for rosacea and for now David Pascoe is footing the bill to keep RF going. When the donations are gone for the RRDi it will simply dissolve. We can't afford to change to a different platform but if we do because of some generous donation that allows us to switch we will obviously announce it. I have written a post about volunteering if that makes any difference. Can you imagine how many hours volunteers would take to transfer all the data on rosacea that is currently on the RRDi website over to another platform? And if we simply keep the rosacea data on the current website and use another platform why? We do have accounts with social media.

    The RRDi has accounts with Facebook:
    https://www.facebook.com/RosaceaResearch/

    Reddit
    https://www.reddit.com/r/RosaceaResearch/

    LinkedIn:
    https://www.linkedin.com/company/15465371/

    Instagram
    https://www.instagram.com/irosacea/

    And if a volunteer wants to oversee the Instagram account for the RRDi all a volunteer has to do is get the authority to do this from the RRDi and spend the volunteer time doing this. That would be incredible to have a volunteer who would do that for the RRDi, but alas, volunteering isn't happening. And if you look at the RRDi Instagram account, it obviously needs attention. And we really need someone to manage our Twitter account which is really a mess. Any volunteers? Contact us.
    Last edited by Brady Barrows; 25th February 2020 at 09:20 PM.
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  3. #63
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    Quote Originally Posted by owldog View Post
    Thanks laser cat! 70-80% success rate is amazing! I will be so happy with that. That's definitely making me feel hopeful.

    The neurologist is now trialling me on Cymbalta/ duloxetine. If this doesn't work then next up gabapentin and then Mexileitine. He also mentioned Effexor if the Cymbalta doesn't agree with me. But I'm guessing they're about the same?

    He said he can get hold of the Mexelitine. It's very just costly here in the UK privately but it can be done on the NHS so there'll be a bit of a wait for it. He also reconfirmed his diagnosis of EM. The flaring has spread unfortunately to my knees now.

    Are you still on the Cymbalta? If so do you take it at night? I'm going to be taking it along with the mirtazapine. I'm really hoping it helps with the night/ sleep flaring.


    Antswantclear, I'm considering botox as well. I understand it's been helping you? The neurologist I'm seeing can do it but he normally does it for migraines so I'm not sure he's familiar with doing it on my cheeks. Can you recommend anywhere that is experienced at doing it for rosacea in the UK?
    Hi Owldog - have sent you a PM about botox for flushing.

  4. #64
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    Quote Originally Posted by antwantsclear View Post
    Hi Owldog - have sent you a PM about botox for flushing.
    Thanks antwantsclear. Just replied to your PM. Not sure if it went through as it's not showing up in my sent items. Let me know if you haven't received it.

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