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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.

  5. #65
    Senior Member laser_cat's Avatar
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    Default nose flaring

    Just a quick post about nose flaring (swelling, flushing, and for me it burns on the inside of my nose).

    Things that help me:

    -oral metronidazole (about 3 wks in on 250 mg x2 dose, 80% improvement): Derm said there is no true time limit on how long someone can take it and was ok with me taking it indefinitely, trying to reduce to lowest effective dose if possible, if I took a high dose probiotic. (I cannot tolerate side effects)

    -opioids (I will rebound if I stop them abruptly). Depends on dose, which one. On fentanyl it was 100% improvement. A few days into ketamine iv, there was 90% improvement

    -high dose NSAID's - at least 600 mg x2 for a couple days, 100% improvement with 800 mg x3.

    -zomidamide, cymbalta, mexiletine: ~50% improvement, but depends on dose.

    -I'm going at the immune angle hard right now with Imuran, Xeljanz, and Keflex: ~80% improvement.

    Things that did not help me:

    -nasalcrom, antihistamines, vasoactive drugs, diet changes, laser, doxy, all topicals including capsaicin, oral steroids, botox, sympathetic nerve block

    What I've heard / read anecdotally that helped others:

    -topical amitriptyline/ketamine, paxil, low dose accutane, vit D, nasalcrom

    For me the nose flushing was triggered by clonidine use - my nose was like ice and was quick to flush/swell whenever it sensed heat. Getting off it helped but not completely. I'm guessing body introduced some inflammation in attempt to heal it (connective tissue? nerves?) and got caught in a permanent state for whatever reason
    Last edited by laser_cat; 2nd April 2020 at 10:06 PM.

  6. #66
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    Quote Originally Posted by laser_cat View Post
    Just a quick post about nose flaring (swelling, flushing, and for me it burns on the inside of my nose).

    Things that help me:

    -oral metronidazole (about 3 wks in on 250 mg x2 dose, 80% improvement): Derm said there is no true time limit on how long someone can take it and was ok with me taking it indefinitely, trying to reduce to lowest effective dose if possible, if I took a high dose probiotic. (I cannot tolerate side effects)

    -opioids (I will rebound if I stop them abruptly). Depends on dose, which one. On fentanyl it was 100% improvement. A few days into ketamine iv, there was 90% improvement

    -high dose NSAID's - at least 600 mg x2 for a couple days, 100% improvement with 800 mg x3.

    -zomidamide, cymbalta, mexiletine: ~50% improvement, but depends on dose.

    -I'm going at the immune angle hard right now with Imuran, Xeljanz, and Keflex: ~80% improvement.

    Things that did not help me:

    -nasalcrom, antihistamines, vasoactive drugs, diet changes, laser, doxy, all topicals including capsaicin, oral steroids, botox, sympathetic nerve block

    What I've heard / read anecdotally that helped others:

    -topical amitriptyline/ketamine, paxil, low dose accutane, vit D, nasalcrom

    For me the nose flushing was triggered by clonidine use - my nose was like ice and was quick to flush/swell whenever it sensed heat. Getting off it helped but not completely. I'm guessing body introduced some inflammation in attempt to heal it (connective tissue? nerves?) and got caught in a permanent state for whatever reason
    Laser_cat really appreciate the update.

    That's great that you've been making progress with immunosuppressives. Are these improvements just for the nose flushing? Or do they also help for the overall flushing including cheeks and ears?

    I only ask because I oddly find different drugs help just for the nose flushes for me. It seems to be a slightly different mechanism to the flushing I get on my cheeks and ears.

  7. #67
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by owldog View Post
    Laser_cat really appreciate the update.

    That's great that you've been making progress with immunosuppressives. Are these improvements just for the nose flushing? Or do they also help for the overall flushing including cheeks and ears?

    I only ask because I oddly find different drugs help just for the nose flushes for me. It seems to be a slightly different mechanism to the flushing I get on my cheeks and ears.
    Yes I agree about the nose being different. Topical amitriptyline 6-10% (I recently added diazepam 2% and baclofen 5%, but it's the amit. that's doing the heavy lifting..) is great for my ears - so I think more nerve-based there, less inflammation. My nose is the opposite - responding more to immune agents. My cheeks are the hardest to treat - I think maybe sympathetic hyperexcitability (social flaring, cold->hot flaring - which for me responds to low dose propranolol), unchecked neurogenic inflammation (botox has been great for night flaring, afternoon flaring in the past for me ... but could never really help my nose flares), and maybe a different type of inflammation than the nose ... not sure.

    My cheeks aren't significantly helped by my current immune drugs although I still need several more weeks to do a full trial. My cheeks/eyelids are helped some in terms of the swelling. My jaw joint is now 100% (both sides had pain with chewing) and in theory that should calm the trigeminal nerve which might help with facial redness/pain. Even if the immune drugs don't help my cheeks significantly on their own, I wonder if they might help the nerve-based drugs work better. My doc said he had a patient who needed both lyrica and IVIG for improvement, and that it was really the combination that worked well for her.

    Frustrating that cheeks, nose, ears sort of have their own micro-environments!

    Take care

    edit - opioids are great for my nose, as well as "time of day" flaring on cheeks/nose. A pain doc told me they probably work by binding to either end of the sensory nerves to prevent release of substance p, glutamate, etc. (they don't help social flaring for me.) They are maybe the only thing so far I've found to help both my nose and cheeks together + equally (though I personally don't think the side effects are worth it)

    edit 2 - Oh! I forgot to say, that oral metro DID HELP MY CHEEK STABBING TYPE OF PAIN, that mexiletine couldn't get. (Baclofen could get this, but it didn't work quite right for me.) Unfortunately I had to stop the oral metro due to side effects, but we'll see if my current immune cocktail is able to get that, too. My guess is by suppressing nearby immune cells, it inhibited cytokine and nerve growth factor release that would otherwise activate sensory nerves through TRPV1 / nerve growth factor receptors.
    Paper saying efficacy of lidocaine is dependent on: concentration of lidocaine, type of pain, and presence of nearby inflammation/nerve growth factor - "Lidocaine differentially affects NGF‐induced mechanical hyperalgesia (analgesic effect) and heat sensitivity of nociceptors (sensitizing effect). These opposing responses may be attributed to block of sodium channels vs. sensitization of TRPV1. "
    https://onlinelibrary.wiley.com/doi/...in.2011.08.004
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    Last edited by laser_cat; Yesterday at 07:49 PM.

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