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Thread: neurogenic rosacea -- my battle.

  1. #11
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    Lizzy,

    Such awesome news! Yay!! Congratulations on winning this battle. Perseverance certainly pays off.

    Is the Amlodipine helpful for pain and flushing? It’s so interesting to me how a drug that would apparently worsen rosacea at higher doses could be so helpful in a smaller dose. Did it help with permanent redness at all?

    Thank you,
    SG

  2. #12
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by sg321 View Post
    Lizzy,

    Such awesome news! Yay!! Congratulations on winning this battle. Perseverance certainly pays off.

    Is the Amlodipine helpful for pain and flushing? It’s so interesting to me how a drug that would apparently worsen rosacea at higher doses could be so helpful in a smaller dose. Did it help with permanent redness at all?

    Thank you,
    SG
    Hey SG -

    Thank you so much. The battle is not won yet for sure but at least I feel like I'm on the right track I am very lucky to have supportive family and access to good healthcare, otherwise I'd be nowhere for sure.

    The amlodipine is helpful for both pain + flushing, I think by evening out blood flow / oxygen tension in my face. It is esp. helpful for the evening burning -- how my facial skin can be BOTH softer and not as hot, seems a bit couterintuitive! I had to come off it for my neurodiagnostic testing and the burning just came right back. It is neutral for my baseline redness, albeit caused flushing the first time I took it.

    Yea, the lowest pill comes in 2.5 mg and I take about a quarter of that only lol :p (Actually I now have the liquid form for baby dosing.) There was an informal poll amongst EM patients regarding magnesium (a natural calcium channel blocker) -- about a third get better, a third have no result, and a third get worse. (I had tried mag with no benefit). Sucks how much this is trial and error!

    eg - https://www.ncbi.nlm.nih.gov/pubmed/11847944

    "These results suggest a possible role for high-dose oral magnesium in the treatment of EM and, perhaps, other vascular disorders."

    Wishing you well,

    Lizzy

    edit - amlodipine isn't really effective for me anymore, but might be for others.
    Last edited by laser_cat; 26th October 2019 at 12:34 AM.

  3. #13
    Senior Member laser_cat's Avatar
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    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
    Last edited by laser_cat; 29th February 2020 at 08:02 PM.

  4. #14
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    .
    Last edited by laser_cat; 26th October 2019 at 12:35 AM.

  5. #15
    Senior Member laser_cat's Avatar
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    But continuing with update stuff - My neurologist took punch biopsy in my leg and confirmed I had non-length dependent small fiber neuropathy. My legs are fine, but there can be a lower density of nerves even in “ok” regions in neuropathies. I wonder how many people with disabling flushing/burning on here + other groups, would end up having positive results, esp. women with acute onset, possibly with coexisting immune issues. Erythromelalgia is the term used to describe burning feet and often goes hand-in-hand with (length dependent) small fiber neuropathies (either dysfunctional blood vessels + maldistributed blood flow causing hypoxia and neuropathies, or the neuropathy causing dysfunctional blood vessels … the vasculature + nerve dysfunction often dovetail) Facial erythromelalgia is a controversial diagnosis and is generally not given. However, just as small fiber neuropathy doesn’t always start with the feet, I wonder why there is a mental hurdle in the medical community acknowledging that maybe, the same or at least similar phenomenon that we recognize as EM (which is not even a separate disease entity, but a symptom complex much like rosacea is, without any diagnostic test) might start in the face/ears/trunk? When I read papers by medical experts on EM and flushing (see later .. I included a couple back and forth letters on "facial erythromelalgia?"), it honestly sounds like a territorial pissing contest with a conspicuous omission of anything factual; I believe the unfortunate consequence of physicians shying away from "facial Erythromelalgia" diagnosis or at least consideration, is that appropriate treatment is often delayed.
    Last edited by laser_cat; 26th October 2019 at 12:49 AM.

  6. #16
    Senior Member laser_cat's Avatar
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    I will copy / paste a recent portion of my neurologist’s medical notes in case it is helpful for anyone. Note that if you have positive biopsy, you likely have neuropathy; however a negative punch biopsy will not definitively rule out neuropathy.

    
"

    I talked about treating her symptoms as idiopathic painful small-fiber neuropathy with steroid or IVIG.
    • She has tried many available symptomatic treatments
    • Especially when risk factors of sensory small-fiber or ganglionopathy are lacking (particuarly in pediatric or adolescent patients) are lacking/absent, “dysimmune” process is often suspected.
    Immunotherapy with steroid and IVIG (intravenous immunoglobulin) has been recommended as expert opinion with careful reviews on available data and literature.
    • I explained to Ms. * evidence level of immunotherapy for small-fiber neuropathy
    • We need more evidence for small-fiber/autonomic neuropathy. We will do skin biopsy today
    • With positive findings, we will try steroid or IVIG
    • REFERENCE: Neurotherapeutics (2016) 12:108-117. J Peripheral Nervous system (2006) 11:47-52
    • Active clinical trial of IVIG in EU: NCT02637700
    "
    Last edited by laser_cat; 18th July 2018 at 11:21 PM.

  7. #17
    Senior Member laser_cat's Avatar
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    The following paper is one of the ones I think that is used to try to convince insurance to pay for IVIG (which is $) and help build a case of dysimmune or autoimmune causes of otherwise “idiopathic” neuropathy. The author Oaklander is an expert in this area feels that SFN (small fiber neuropathy) is becoming an epdemic and under-recognized. She also presents evidence that fibromyalgia cases (once deemed to be the “trash can” diagnosis of foo-foo symptoms and “hysterical” women) is often rooted in neuropathy and definitely NOT psychogenic (as docs are tempted to entertain I think, whether unconsciously or not). Of interest to flushers, might be the woman in Fig 1. Oaklander has said in a lecture of hers I watched (when I’m stressed, I research obsessively :p ) that “idiopathic is latin for 'we are idiots'. if a doctor ever tells you that you have idiopathic anything, just say no.” ;)

    “In additional to the above systemic autoimmune causes of SFN, there is emerging evidence that some cases of SFPN of unknown cause (“idiopathic SFPN”) are caused by acute or chronic tissue-specific dysimmunity, akin to the tissue-specific dysimmune large-fiber neuropathies Guillain-Barré syndrome and chronic inflammatory neuropathy. Several authors have documented steroid-responsive cases of idiopathic SFPN [89, 90]. My patient, depicted in Fig. 5, had no history of autoimmunity or serological markers but his severe refractory neuropathic limb pain, swelling and redness responded within hours to intravenous methylprednisolone, his symptoms resolved within a year and no longer required treatment, and he remained without treatment or recurrence for more than a decade, consistent with an acute monophasic autoimmune form of SFPN”


    https://link.springer.com/article/10...311-015-0395-1
    Last edited by laser_cat; 17th July 2018 at 06:22 PM.

  8. #18
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    “NLD-SFSN is more common in women, presents at a younger age, and is more likely to be associated with immune-mediated conditions than LD-SFSN.”

    https://www.researchgate.net/publica...ory_neuropathy

    My gut says that maybe neurogenic rosacea, facial EM, etc, might eventually be something like what they are now realizing with fibromyalgia, in how small fiber neuropathies (which are testable, and sometimes even cured) might underly a good portion of cases (as Oaklander wrote - "A new discovery is that roughly half of patients with fibro have objective evidence of small fiber polyneuropathy"). With fibro, it was originally thought to be isolated to the muscles! Just like in severe flushing cases, it might not be isolated I think to the blood vessels. The parallel would almost be poetic. Women make up the majority of both fibro and neurogenic rosacea, yet commonly experience a bias against them when it comes to treatment of chronic pain. (I honestly had no idea how bad this bias was, until I experienced it first-hand.) Small fiber neuropathies represent a problem outside the brain, so this would be evidence there is pain that is not psychogenic.
    Last edited by laser_cat; 18th July 2018 at 11:20 PM.

  9. #19
    Senior Member laser_cat's Avatar
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    In the meantime, I have a 5 day continuous lidocaine iv in several weeks as symptomatic treatment, which I will be following with an oral sodium channel blocker (mexiletine) to hopefully extend the analgesic lidocaine effects. This is hit or miss, but when it hits, it can be very powerful in resetting the neural pain neural loops (might last years, or not at all). I had a 1 hr lidocaine iv in the past, which was very helpful in terms of anti-pain / anti-burning effects, however for only 2 days, although I did not follow that up with mexiletine at the time, which I am now realizing is important to do. For those 2 days though, it felt like I had a numbing agent on all of my nerves in my cheeks .. felt awesome.

    Some other links that I found most helpful in learning about this stuff (with pictures which I appreciate!) -

    https://courses.washington.edu/conj/sensory/pain.htm a damaged c fiber (which normally senses heat + pain) will not only transmit pain info to the CNS, but also reflexively trigger local increase in substance P, degranulating local mast cells, telling blood vessels to dilate. Triggering heat + redness. Triggering more pain. A beta blocker in comparison, will try to block a very specific signal (independent of all this) telling blood vessels to dilate. It might help prevent blood vessel dilation during anxiety, and might indirectly provide some measure of blood vessel stability, but with this model it’s not really addressing the problem. (When the term small fiber neuropathy is used, that is referring to the C fibers and/or A delta fibers.) In this model anything that would remotely causes vasodilation, would be magnified by the damaged C fibers causing an out-of proportion rxn.

    http://journals.sagepub.com/doi/pdf/...863X9200300104 this is an old paper, but fig 2 has a pretty good visual of AV shunting that occurs in EM (but AV shunting also CRPS, diabetic neuropathy, etc) (was helpful for me anyway who could not visualize it!). And explains why vasodilators may help, assuming they appropriately move more blood into the capillaries (which are starving, releasing pro-inflammatory stuffs that not only trigger C fiber damage and pain but tell the shunt to dilate more .. . vicious cycle) relative to the thermoregulatory “shunts”. It explains why dilators might hurt, if they steal blood away from the starving capillaries. Similarly, constrictors might help / hurt. The ideal treatment would be giving blood to the capillaries without also giving blood to the shunts, because the hotter things are, the higher the metabolic requirements are of the capillaries / skin and the more oxygen the capillaries need! … So trying to get this right seems like trying to balance a pencil on its tip. it also explains why blood thinners might help, by making blood more accessible to the starving capillaries. Gentle cooling methods will decrease the overall heat/blood flow, and decrease the oxygen requirements of the capillaries, lessening the pain ... but again might also backfire, like a beta blocker can backfire. AV shunts exist primarily in hands/feet/nose/ears. However, I think a similar mechanism can occur for cheeks, in which the capillary sphincters get overly constricted, forcing blood through a “channel” which bypasses the capillary bed and acts like AV shunts. Dysfunctional constricting abilities of sympathetic nerves (that release norepinephrine, not the C fibers) can encourage AV shunting. Also, neuropathies and AV shunting can dovetail as I mentioned, but how exactly this happens I don’t think is known. However, AV shunting is thought to be the final common pathway of EM (one theory at least) regardless of root cause.

    https://pdfs.semanticscholar.org/471...572.1586047420 - has a (better) picture (fig 2) of shunting mechanism happening in facial skin / rosacea.

    Again, I don't know if this is going on with me or anyone really, but I think either of these models could explain a 24/7 flushing / burning cycle, where the body is just not adapting and automatically recalibrating receptor sensitivities (or whatever..) appropriately even if given enough time, if that makes sense.

    Edit to add -

    https://www.va.gov/RAC-GWVI/meetings.../Oaklander.pdf (slides from one of Oaklander's lectures ... an understandable / distilled version of some of her papers) Oaklander makes the point in her lecture that, as a simple proxy for a punch biopsy, might be pupillometry, where your irises aren't constricting as they should (I have this anomaly). She is trying to argue the bigger picture that SFN probably underlies so many different, and perhaps unrelated, symptoms and symptom complexes. She guesses that CRPS (when pain, swelling, redness of a limb usually goes haywire after say, a car accident ... and never heals ... just gets worse and worse) actually has (perhaps dysimmune) SFN causes, where the SFN might not be that apparent at the time. Extrapolating a bit, I wonder if when someone just has a horrible reaction to laser, that never heals, if they might too have an underlying (perhaps dysimmune) SFN that is not yet apparent.
    Last edited by laser_cat; 5th April 2020 at 12:46 AM.

  10. #20
    Senior Member laser_cat's Avatar
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    Disclaimer that i hope is obvious - I am not an MD so I might not have gotten everything right but I am hoping that maybe that some of this triggers an idea for someone out there on a similar journey … or at least can be comforted by the fact I am on this crazy journey with them. For years I pleaded with docs saying just take a damn biopsy to see what it is going on!, to which dermatologists said “it will just tell us what he already know — general inflammation.” Had I known about non length dependent small fiber neuropathy, I would have specifically asked for it (usually this is covered under insurance). When I read about it, I think, yeah this diagnosis fits. But I don’t know whether to be grateful or punch a wall haha.

    Thank you for letting me share some of my story here.
    Last edited by laser_cat; 17th July 2018 at 06:10 PM.

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