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Thread: Looking for a derm/Dr. that understands neurogenic rosacea

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    Default Looking for a derm/Dr. that understands neurogenic rosacea

    I'm wondering if anyone can recommend a doctor that is willing to prescribe treatments beyond the usual meds for rosacea, ideally in or near PNW USA? My PCP and the dermatologists I've seen are really befuddled by my symptoms, which I think are neurogenic rosacea (sudden onset of flushing, flushing at night when I lay down, swelling of nose and cheeks). At this point I'm willing to travel to see someone that doesn't stare at me like I'm crazy during appointments!

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    You might want to ask Martin Steinhoff or some of the other doctors at UCSF dermatology. They wrote a paper about this condition some years ago. Maybe they'll know of a doctor closer to you. https://jamanetwork.com/journals/jam...article/426431

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    Quote Originally Posted by Jamoverton View Post
    I'm wondering if anyone can recommend a doctor that is willing to prescribe treatments beyond the usual meds for rosacea, ideally in or near PNW USA? My PCP and the dermatologists I've seen are really befuddled by my symptoms, which I think are neurogenic rosacea (sudden onset of flushing, flushing at night when I lay down, swelling of nose and cheeks). At this point I'm willing to travel to see someone that doesn't stare at me like I'm crazy during appointments!
    I think it's worth being willing to travel to get them prescribed by a knowledgeable dermatologist - then a good PCP or local derm is likely to be willing to follow their direction once they know it works for you.

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    Have you asked about pregabalin (Lyrica)?
    Brady Barrows
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    Quote Originally Posted by Brady Barrows View Post
    Have you asked about pregabalin (Lyrica)?
    I haven't really looked into Lyrica yet- I thought that was more for pain, or is that not the case? I actually don't have the pain symptom, which seems like it's fairly common with neurogenic rosacea. My symptoms are more the uncomfortable burning flush and swelling. If it could help with that I would definitely look into it!

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    Quote Originally Posted by antwantsclear View Post
    I think it's worth being willing to travel to get them prescribed by a knowledgeable dermatologist - then a good PCP or local derm is likely to be willing to follow their direction once they know it works for you.
    That makes sense- thank you for the tip!

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    Quote Originally Posted by jrlhamcat2 View Post
    You might want to ask Martin Steinhoff or some of the other doctors at UCSF dermatology. They wrote a paper about this condition some years ago. Maybe they'll know of a doctor closer to you. https://jamanetwork.com/journals/jam...article/426431
    Thank you! I will look into contacting one of these doctors, I think that could be really helpful.

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    Quote Originally Posted by Jamoverton View Post
    I'm wondering if anyone can recommend a doctor that is willing to prescribe treatments beyond the usual meds for rosacea, ideally in or near PNW USA? My PCP and the dermatologists I've seen are really befuddled by my symptoms, which I think are neurogenic rosacea (sudden onset of flushing, flushing at night when I lay down, swelling of nose and cheeks). At this point I'm willing to travel to see someone that doesn't stare at me like I'm crazy during appointments!
    I recommend Tim Berger at UCSF derm. He is referral only. He has the most experience with neurogenic rosacea that I've found in US, and also with related conditions like neuropathic itch and feet erythromelalgia. I hear patients of his and other derms as well describe him as a "world class doctor" - and I agree. He has good knowledge of the skin, rheumatology, and small fiber nerves. Keep in mind there are no answers for this, yet though.
    Last edited by laser_cat; 12th November 2019 at 10:58 PM.

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    Quote Originally Posted by laser_cat View Post
    I recommend Tim Berger at UCSF derm. He is referral only. He has the most experience with neurogenic rosacea that I've found in US, and also with related conditions like neuropathic itch and feet erythromelalgia. I hear patients of his and other derms as well describe him as a "world class doctor" - and I agree. He has good knowledge of the skin, rheumatology, and small fiber nerves. Keep in mind there are no answers for this, yet though.
    Thank you for the recommendation!

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