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Thread: neurogenic rosacea -- my battle.

  1. #71
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Rtstar View Post
    Hi laser_cat, I was wondering if you tried zz cream before? I think I may have neurogenic rosacea but I'm not too sure. I have undiagnosed non painful EM since I was a child so I do believe there may be a possible connection. I was wondering if zz cream is completely pointless for a neurogenic rosacea sufferer. Did you always know your rosacea was neurogenic or was it after failed treatments did you realize this? If you tried it did it get worse or was it just that nothing changed? I'm about to start using it (still walling for my zz cream to arrive) and am just concerned if my skin gets worse.

    I also read in your thread that you tried Ketamine and Amitriptyline and that it wasn't effective for you. Did you try it as a compound Ketamine 0.5% and Amitriptyline 1% or did you try them separate? I read in another thread that this compound worked for someone and they never came back to update so I assume it means it was successful.
    I think neurogenic rosacea is just another term for flushing with strong sensations like stinging, burning, itching. Eythromelalgia on the face - to me, anyway - seems to be a subtype of neurogenic rosacea + means painful flushing that is exacerbated by heat and relieved by cooling. I don't think there is such a thing as non-painful erythromelalgia ("algia" means pain and pain is technically required for EM diagnosis) except I know the definition of pain is subjective/personal. I consider (non length dependent) small fiber neuropathy to be my primary diagnosis because that is really the only term that sheds some light on pathophysiology. The other 2 are just ... re-describing my symptoms.

    I tried amit and ket individually and together. The ketamine topical made me worse. The amit is effective on my ears only (+higher concentration is better). Everyone responds differently. I have never tried zz cream.
    Last edited by laser_cat; 28th April 2020 at 04:02 PM.

  2. #72
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    Quote Originally Posted by laser_cat View Post
    I think neurogenic rosacea is just another term for flushing with strong sensations like stinging, burning, itching. Eythromelalgia on the face - to me, anyway - seems to be a subtype of neurogenic rosacea + means painful flushing that is exacerbated by heat and relieved by cooling. I don't think there is such a thing as non-painful erythromelalgia except I know the definition of pain is subjective/personal. I consider (non length dependent) small fiber neuropathy to be my primary diagnosis because that is really the only term that sheds some light on pathophysiology. The other 2 are just ... re-describing my symptoms.

    I tried amit and ket individually and together. The ketamine topical made me worse. The amit is effective on my ears only (+higher concentration is better). Everyone responds differently. I have never tried zz cream.
    ok thanks for the response it is very helpful, I will look into the amit and ket after my zz cream treatment. There are people with non-painful EM, sometimes it takes years to become painful and some people never experience pain at all but its harder to diagnose without pain. I will keep following your journey because it is very helpful to me. Thanks again

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    Quote Originally Posted by antwantsclear View Post
    Hi Rtstar - I've been diagnosed with EM symptoms of the ears and the ZZ cream is really helpful. It's certainly worth a try. You may also oral medications to control the flushing symptoms.
    thank you so much! This is what i was hoping for

  4. #74
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by antwantsclear View Post
    Hi Rtstar - I've been diagnosed with EM symptoms of the ears and the ZZ cream is really helpful. It's certainly worth a try. You may also oral medications to control the flushing symptoms.
    You may see a helpful list of treatments to prevent flushing here. And if you purchase the ZZ cream though the RRDi, our non profit organization for rosacea receives a very small affiliate fee to help us keep our website going.
    Brady Barrows
    Blog Join the RRDi



  5. #75
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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
    Hi laser_cat! When you talk about the things that helped you, do you have to be taking all of those things at the same time to get the 100% improvement? Or have you tried all those things at separate time? By 100% improvement from the NSAIDs do you mean it completely stopped your nose flushing? Thanks for all your help!

  6. #76
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    Quote Originally Posted by laser_cat View Post
    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, and "normalized" the temp on my cheeks at baseline. (Baclofen could soothe the stabbing pain + also "normalize" the temp on my cheeks at baseline, 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 and keep TRPV1 sensitized.
    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
    Laser_cat sorry it's taken me so long to get back. Thanks for the detailed response.

    Yes they are their own micro environments which is a handful to manage when nose, cheeks and ears all flush and some medications work for some and exacerbate others.

    You mentioned low dose accutane for possible help with the nose flushing. Mine actually never flushed on accutane. I was on it very low dose for many years. It was only after I stopped when I noticed my nose started flushing and swelling up at the tip. I get the burning on the inside too now.

    I've been trialling hydroxychloroquine and so far so good. I haven't been on it for long so very early days but my ear flushing seems to have been vastly reduced. Now my ears only flush around once or twice a week as opposed to multiple times every night. The redness on my cheeks is more pink now rather than angry red and it calms down a lot faster after my shower and if I get hot. And I've seen some improvement on the itching on my cheeks.. There were a few red patches on my temples which have completely cleared up. They came about when I had a full body rash last October. The rheumatologist thinks it is auto immune related and I have something 'lupus like'.

    After starting the hydroxychloroquine the sleep flushing has stopped as well for the moment and I'm sleeping so much better and have more energy in the day. The only downside is the nose flushing seems a bit worse. Haha can't ever get it right. It's as if the blood just has to pool somewhere so my poor nose is getting it now.

    The tip of my nose gets ice cold then the minute my body temperature warms up the slightest it flares up and burns and tingles on the inside. I'm hoping this will calm down as I get used to the drug. If not I'm going to start duloxetine and possibly try mepacrine as well as continue with the hydroxychloroquine. Have you tried mepacrine yet?

    I am also finally doing a very slow taper down of the clonidine and hope this will help.

  7. #77
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    Quote Originally Posted by laser_cat View Post
    The drugs I was rx'ed by derm (in this order):

    gabapentin
    lyrica
    doxepin
    (already on cymbalta, but he would have rx'ed it)
    mexiletine
    plaquenil
    ranexa
    nadolol
    topical amitriptyine / ketamine
    encouraged lidocaine iv's
    encouraged IVIG
    marinol (marijuana THC)
    baclofen
    retry IVIG at higher dose / longer time frame (2 gm IVIG / kg body weight / mo for 6 mo)
    azathioprine

    by pain doc:

    lidocaine iv
    ketamine iv
    butrans
    keppra
    trileptal
    gamma core (tVNS) (This is good in theory but I think the vibration on neck made me worse)
    Aimovig
    topical diazepam
    topical baclofen
    stellate ganglion block
    trigeminal block
    zonisamide
    flecainide

    by another derm:

    midodrine
    low dose naltrexone
    indomethacin
    high dose antihistamine (2x zyrtec + 2x allegra)
    botox
    amlodipine
    propranolol ER
    aprepitant (could not get insurance coverage more than 2 days, very difficult to do so)
    tegretol
    offered butorphanol nasal spray
    topical amitriptyline
    topical bupivicaine / lidocaine / tetracaine
    memantine
    glycopyrrolate
    suggested topical capsaicin OTC 5x/day, until acclimation, if I wanted to give it a go (warned me he never had a patient use on face/ears)
    daily triptan (frovatriptan)
    oral metronidazole (just to get a handle on edema)
    offered tramadol
    Xeljanz
    Tanezumab (compassionate use)

    by neuro:

    IVIG (1 gm IVIG / kg body weight / mo for 3 mo)

    by other docs (PCP, psych,..):

    clonazepam
    mirtazapine
    cymbalta vs. paxil vs. effexor
    atarax
    clonidine
    topamax
    gastrocrom
    Hi laser_cat,

    First of all, thank you for this wealth of knowledge!

    I was wondering how effective each medicine was for you. Is it possible to tell more about how effective each medicine was, or make the list in order of effectiveness.

    Thanks!

    edit: i wasn't done reading the entire thread and now see you already commented on this.
    Last edited by joshuaweismann; 21st May 2020 at 08:20 PM.

  8. #78
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    Quote Originally Posted by owldog View Post
    Laser_cat sorry it's taken me so long to get back. Thanks for the detailed response.

    Yes they are their own micro environments which is a handful to manage when nose, cheeks and ears all flush and some medications work for some and exacerbate others.

    You mentioned low dose accutane for possible help with the nose flushing. Mine actually never flushed on accutane. I was on it very low dose for many years. It was only after I stopped when I noticed my nose started flushing and swelling up at the tip. I get the burning on the inside too now.

    I've been trialling hydroxychloroquine and so far so good. I haven't been on it for long so very early days but my ear flushing seems to have been vastly reduced. Now my ears only flush around once or twice a week as opposed to multiple times every night. The redness on my cheeks is more pink now rather than angry red and it calms down a lot faster after my shower and if I get hot. And I've seen some improvement on the itching on my cheeks.. There were a few red patches on my temples which have completely cleared up. They came about when I had a full body rash last October. The rheumatologist thinks it is auto immune related and I have something 'lupus like'.

    After starting the hydroxychloroquine the sleep flushing has stopped as well for the moment and I'm sleeping so much better and have more energy in the day. The only downside is the nose flushing seems a bit worse. Haha can't ever get it right. It's as if the blood just has to pool somewhere so my poor nose is getting it now.

    The tip of my nose gets ice cold then the minute my body temperature warms up the slightest it flares up and burns and tingles on the inside. I'm hoping this will calm down as I get used to the drug. If not I'm going to start duloxetine and possibly try mepacrine as well as continue with the hydroxychloroquine. Have you tried mepacrine yet?

    I am also finally doing a very slow taper down of the clonidine and hope this will help.
    That's great to hear! Really thrilled for you.

    The plaquenil never really helped my face - mostly my neck. So that's really interesting it's helping you and some other people who have similar symptoms.

    Update on my end: I had a biopsy of my cheek which showed a significant amount of inflammation consistent with lupus or dermatomyositis. I have high creatine kinase which suggests dermatomyositis. In case that is helpful for you (or anyone). There are a lot of people with overlapping small fiber neuropathy and autoimmune conditions and my hunch is that there is a tangled neuro-immune web that got out of control. Two leading dermatologists each independently thought my cheek biopsy would show traditional rosacea in my face and it did not. One dermatologist thought it would show non-specific inflammation (most biopsies he's taken of people like me show non-specific inflammation).

    Unfortunately 9 weeks on Imuran didn't do much so I stopped. (It helped with some swelling, joint pain, similar details like that.) I am on keflex (antibiotic) which I know helps me with inner nose burning, nose flushing, itch, sensitivity to touch. I'm still on Xeljanz and I recently increased my cymbalta dose a bit. It would be impossible for me to tease everything out at this point lol but I know the keflex, Xeljanz, cymbalta are each positive. I am going without night flaring sometimes and tolerating heat much better.

    Nice to hear from you.

    Best,
    Last edited by laser_cat; 26th June 2020 at 05:19 PM.

  9. #79
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    Quote Originally Posted by laser_cat View Post
    That's great to hear! Really thrilled for you.

    The plaquenil never really helped my face - mostly my neck. So that's really interesting it's helping you and some other people who have similar symptoms.

    Update on my end, I had a biopsy of my cheek which showed significant inflammation - lupus or dermatomyositis. I have high creatine kinase which suggests dermatomyositis. In case that is helpful for you (or anyone). There are a lot of people with overlapping small fiber neuropathy and autoimmune conditions and my hunch is that there is a tangled neuro-immune web that got out of control. Interestingly, TWO DERMATOLOGISTS each independently thought my cheek biopsy would show traditional rosacea in my face and it did not. One dermatologist thought it would show insignificant inflammation (most biopsies he's taken of people like me show that).

    Unfortunately 9 weeks on Imuran didn't do much so I stopped. (It helped with some swelling, joint pain, similar details like that.) I am on keflex (antibiotic) which I know helps me with inner nose burning, nose flushing, itch, sensitivity to touch. I'm still on Xeljanz and I recently increased my cymbalta dose a bit. It would be impossible for me to tease everything out at this point lol but I know the keflex, Xeljanz, cymbalta are each positive. I am going without night flaring sometimes and tolerating heat much better.

    Nice to hear from you.

    Best,
    Thanks laser_cat.

    That's really interesting that the inflammation for you is pointing more to an autoimmune angle as well. I did a myositis antibody screen recently which showed only some weak positive bands but the rheumatologist thought it was enough to include that in the diagnosis for autoimmune. He's been very helpful and actually thought the redness on my face was more a lupus rash rather than rosacea. I haven't got a cheek biopsy done yet though. I may ask about trialling keflex as I have all the symptoms you described.

    Funny how a lot of dermatologists think flushing or redness is automatically rosacea. I had one who really thought that I had a demodex problem because of the intense itching I get, I even did a 13 week trial of soolantra to work out mostly for myself whether that was true. But it didn't do anything for me, hydroxychloroquine has been the first drug that actually feels like it's starting to help the instability on my face a bit. I guess once the inflammation has been set in motion it takes a long while to undo. But I'm hopeful it will unravel.

    I'm so pleased the Xeijanz, keflex and Cymbalta are working for you. I hope you continue to see positive results.

  10. #80
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    Quote Originally Posted by owldog View Post
    TI did a myositis antibody screen recently which showed only some weak positive bands but the rheumatologist thought it was enough to include that in the diagnosis for autoimmune. He's been very helpful and actually thought the redness on my face was more a lupus rash rather than rosacea.
    That's really interesting to me - my understanding is the myositis antibodies are pretty specific (eg if you have them, you have dermatomyositis). (Mine were all negative.)

    I am on Cellcept now (swapped out Xeljanz) and going to retry IVIG at higher dose. Under the dermatomyositis diagnosis, my insurance easily approved IVIG for me. Stanford dermatology said that when they analyzed their patient records for dermatomyositis, they found Cellcept and IVIG to be the best for skin DM. My derm now said I needed an immunosuppressant / modulator like methotrexate, cellcept, Imuran - that my muscle enzymes were likely going to continue to climb otherwise. I will say that my body feels much better on one of these types of drugs - feels like I'm 10-15 yrs younger. My doc said this doesn't really happen when "normal" people are given an immunosuppressant - they typically feel terrible.

    The itch is more common in DM vs lupus - I think one of the differentiating clinical features. (I have severe itch on my scalp as well as face.) Yeah, I noticed Imuran, Xeljanz, and antibiotics each help with my itch. (I think my derm's goal is to find a non-antibiotic sol'n). (I'm guessing the Cellcept will too.) Sorry you wasted time with soolantra (so did I ..)

    BTW - my biopsy looks the same as this man's (from what I can tell with these nonsensical phrases, anyway! ... mucin in the dermis and vacuolar changes in the interface) The man got response with basic EM drugs although he had a connective tissue disease biopsy. Really wonder what the relationship is between the CTD biopsy and the more EM-type of clinical symptoms. (I'm getting a second pathologist analysis on my biopsy slides.)

    https://www.jaad.org/article/S0190-9...889-1/abstract

    Glad you have a helpful doc!

    PS - I'm still reading about vit D and the effect it can have in terms of the immune system / nerves, mostly when I can't sleep at night lol. I've asked all my doctors about counterproductive effects of vit D and they each don't know / haven't heard of that response before. It is pretty wild, how unrecognized that is by the medical community, yet how much of predictable "thing" it is here. I hope one day there is an answer!
    Last edited by laser_cat; 26th June 2020 at 07:06 PM.

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