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Thread: neurogenic rosacea -- my battle.

  1. #31
    Senior Member Brady Barrows's Avatar
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    What I find is the frustration of how little rosaceans want to do something about this for themselves and band together and do something about rosacea research. They opt out that some magic pill or topical will be found to resolve their issues. Do they want to band together and do something about encouraging novel rosacea research?

    Rosaceans allow the NRS to spend 60 cents of every dollar donated to be spent on two private contractors owned by the director of the NRS and only spend 10 cents on rosacea research. No one cares. This is frustration to me. Rosaceans want someone else to do it for them. I have brought together over 1170 members into the RRDi and hardly anyone posts. I have made it so that anyone can hide behind a cryptic display name and never reveal their identity or contact information and still no one hardly ever posts. And what about funding their own rosacea research? Last year the RRDi received absolutely no donations. In 2016 if it wasn't for Demodex Solutions we would be close to running out of money. This year we have had $60 donated from three contributors. The RRDi can't fund rosacea research unless we get volunteers and donations to do this. Wouldn't it be nice to fund your rosacea doctor say $15K to do some novel research on neurogenic rosacea? You try to get the money to do this, and I can tell you from experience that this isn't easy to do.

    If others don't volunteer and work together for rosacea patient advocacy then rosaceans deserve what they get with the NRS and the AARS which are the only non profits doing any rosacea research. And what kind of research do these organizations do? Who donated primarily to the these organizations? Pharmaceutical companies. And what kind of research do they engage in? You guessed it. Here is a quote from my book I wrote in 2007 on page 82:

    "Dr. Kligman mentions the 'indifference of the National Institutes of Health, which with an annual budget of nearly 30 billion dollars, has not seen fit to fund a single grant for the investigation of rosacea.' Dr. Kligman also says that most research done on rosacea is by the skin industry which is 'voluminous literature, mainly focused on treatments sponsored by commercial interests; perhaps not the most credible source of unbiased research.' ”

    If rosaceans what to be novel and fund any kind of research they want to engage in they will need to be united, volunteer and obtain donations to be used in novel rosacea research. Lizzy, are you able to volunteer? Sure could use the help.
    Last edited by Brady Barrows; 18th July 2018 at 10:09 PM.
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  2. #32
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by laser_cat View Post
    Hello .... Laser - not helpful in the least.
    Lizzy,
    I also find it amusing that your display name is ironic.
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  3. #33
    Senior Member laser_cat's Avatar
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    I can only really speak about neurogenic rosacea: My sense is that most people with disabling flushing/burning of face/upper body gravitate to erythromelalgia forums, whether they are diagnosed with EM, neurogenic rosacea, autonomic dysfunction or whatever. I think most of us realize pretty quickly we have a chronic pain condition, and EM is automatically recognized as a chronic pain condition, whereas (neurogenic) rosacea is not.

    When I talked to my PCP about applying for disability status (within my university), she told me she's game, but I'd need to have a better "story" other than rosacea, flushing, or neurogenic rosacea. She said this while I was trying to put out the fire in my face with cooling packs etc. She was a great physician, but in hindsight, I believe she did me a disservice not to refer me to pain management, when all it took was a button to press on her end. I was too defeated and too exhausted at the time but I regret not trying to use that moment as a teaching opportunity to promote awareness that yes, these flushing/burning cases can cause disability -- and let's convey this to my university. Instead I agreed to say I was anxious/depressed (when I don't think I was) and worse I began to wonder how much of it was in my head, and maybe I wasn't really burning ... because I shouldn't be burning for no reason, right?

    My hope though by sharing some of my story here, is to remove some of the stigma around flushing/burning (which only adds to the hurt..), in how, yes, it can potentially be devastating, 100% life-changing, career-ending, etc. Esp. with the long-standing association that rosacea is just a "cosmetic disease" amongst insurance / doctors / friends/family, well, it can feel especially shameful.

    Even though I'm starting to try and be functional again, it will probably take me a long time to process this experience.

    Thank you for the invite to volunteer However I am on the quest to find non rosacea hobbies / projects Because it has absorbed 90% of my life the past couple years, I hope to start to move on, fully functional or not (I now feel like I can trust my docs to guide me). However, I will update this thread with the lidocaine infusion / IVIG / any "big" treatment I am lucky enough to try. I definitely admire people like you and Nat in your dedication to help others on their rosacea journey -- I'm confident you have made a big difference for many people looking for info/guidance.

    Best wishes,

    Lizzy
    Last edited by laser_cat; 19th July 2018 at 03:10 AM.

  4. #34
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    Lizzy,
    I also find it amusing that your display name is ironic.
    it's "just a name [I] came up with"

    :p

  5. #35
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    Thanks for continuing to share your story, Lizzy! It is so helpful to others. My hands/feet get really red for no reason sometimes and I wonder if I have a bit of this nerve thing happening too. Hot water and hot sun for even a second are triggers.

  6. #36
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by sg321 View Post
    Thanks for continuing to share your story, Lizzy! It is so helpful to others. My hands/feet get really red for no reason sometimes and I wonder if I have a bit of this nerve thing happening too. Hot water and hot sun for even a second are triggers.
    Thanks SG! How are you doing on the effexor by the way (I think you were trying that one?) and the LDN?

  7. #37
    Senior Member laser_cat's Avatar
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    Just want to give a few more updates -

    - I tried IVIG (intravenous immunoglobulin therapy .. a super anti-inflammatory that can be done indefinitely) that is given for many different autoimmune/inflammatory conditions, including autoimmune nerve conditions. (It is also given for primary immune deficiency disease.) I am very grateful that my insurance covered with positive small fiber neuropathy punch biopsy (Oaklander's "apparently autoimmune" SFN theory). I had 3 months worth (1 wk infusion, 3 weeks apart, for a total of 3 months.) It did not make things worse or better for me but I do think a lot of people with my symptoms (esp. if they have coexisting autoimmune stuff) might benefit. There is a current clinical trial I think for IVIG being used in the context of idiopathic SFN, so we'll probably know more on how well it works in the near future.

    https://www.ncbi.nlm.nih.gov/pubmed/29403541

    Because some people respond to steroids and not IVIG, I might do a steroid pulse in the next couple of months.

    - I had a (temporary) trigeminal block (right). I was given fentanyl (through iv) before the procedure which gave me immediate pain relief (usually lying down is painful, but a min after the fentanyl I felt like I could be there all day..) Unfortunately, by using fentanyl during the procedure (giving pain relief on both sides), the world-class anesthesiologists effectively obscured the results of the actual block, so I can't say for sure if the ($$) trigeminal block itself was helpful at all. What surprised me though was, the fentanyl made me 100% normal for the rest of the day -- burning, flushing, swelling. I thought it would have helped with pain only, if anything (neuropathy is often refractory to opioids). I might consider suboxone (but way down the line).

    -I have added flecainide (anti-arrhythmia, oral sodium channel blocker). It is helping significantly with heat tolerance -- burning + flushing both. I am hoping to increase dose and/or add another sodium channel blocker (maybe anti-seizure, which would block repetitive firing, like phenytoin). I feel that stabilizing the sensory nerves (peripheral) might be the best way to help with all symptoms. Some pain meds act more centrally (gabapentin, lyrica, some anti-depressants) and my experience is they do not hit my pain directly (small fiber neuropathy suggests pain in the periphery or outside the central nervous system..), and also come with huge side effects (they also likely would not help the flushing). So at this point I am using cymbalta, mirtazapine, botox, flecainide.

    I think another way the peripheral nerves can be stabilized is through t type calcium channel blocking -- some meds (anti-seizure) double as both Na+ and t type Ca2+ blockers (like valproate, phenytoin).

    - I have a 5-7 day lidocaine (sodium channel blocker) continuous iv (hopefully..) coming up in the next couple months. Even though lido has a short half life, it's thought to sometimes give pain-relief effects for several months out. If insurance does not approve, my doc said doing a short lido iv every other day is also an option to "reset" the nerves.

    https://academic.oup.com/painmedicin.../2/401/1833467
    Last edited by laser_cat; 26th November 2018 at 04:32 PM.

  8. #38
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    Quote Originally Posted by laser_cat View Post
    Just want to give a few more updates -

    - I tried IVIG (intravenous immunoglobulin therapy .. a super anti-inflammatory that can be done indefinitely) that is given for many different autoimmune/inflammatory conditions, including autoimmune nerve conditions. (It is also given for primary immune deficiency disease.) I am very grateful that my insurance covered with positive small fiber neuropathy punch biopsy (Oaklander's "apparently autoimmune" SFN theory). I had 3 months worth (1 wk infusion, 3 weeks apart, for a total of 3 months.) It did not make things worse or better for me but I do think a lot of people with my symptoms (esp. if they have coexisting autoimmune stuff) might benefit. There is a current clinical trial I think for IVIG being used in the context of idiopathic SFN, so we'll probably know more on how well it works in the near future.

    https://www.ncbi.nlm.nih.gov/pubmed/29403541

    Because some people respond to steroids and not IVIG, I might do a steroid pulse in the next couple of months.

    - I had a (temporary) trigeminal block (right). I was given fentanyl (through iv) before the procedure which gave me immediate pain relief (usually lying down is painful, but a min after the fentanyl I felt like I could be there all day..) Unfortunately, by using fentanyl during the procedure (giving pain relief on both sides), the world-class anesthesiologists effectively obscured the results of the actual block, so I can't say for sure if the ($$) trigeminal block itself was helpful at all. What surprised me though was, the fentanyl made me 100% normal for the rest of the day -- burning, flushing, swelling. I thought it would have helped with pain only, if anything (neuropathy is often refractory to opioids). I might consider suboxone (but way down the line).

    -I have added flecainide (anti-arrhythmia, oral sodium channel blocker). It is helping significantly with heat tolerance -- burning + flushing both. I am hoping to increase dose and/or add another sodium channel blocker (maybe anti-seizure, which would block repetitive firing, like phenytoin). I feel that stabilizing the sensory nerves (peripheral) might be the best way to help with all symptoms. Some pain meds act more centrally (gabapentin, lyrica, some anti-depressants) and my experience is they do not hit my pain directly (small fiber neuropathy suggests pain in the periphery or outside the central nervous system..), and also come with huge side effects (they also likely would not help the flushing). So at this point I am using cymbalta, mirtazapine, botox, flecainide.

    I think another way the peripheral nerves can be stabilized is through t type calcium channel blocking -- some meds (anti-seizure) double as both Na+ and t type Ca2+ blockers (like valproate, phenytoin).

    - I have a 5-7 day lidocaine (sodium channel blocker) continuous iv (hopefully..) coming up in the next couple months. Even though lido has a short half life, it's thought to sometimes give pain-relief effects for several months out. If insurance does not approve, my doc said doing a short lido iv every other day is also an option to "reset" the nerves.

    https://academic.oup.com/painmedicin.../2/401/1833467
    I should have posted here really ..

    If I have Rosacea it's this

    You seem to have trialed every drug possible and continue to try more I assume from this you have not put it in to remission?

    I get the feeling that not many derms know or maybe agree with this sub type? I can references to it but they all seem to stem from one or two Dr.

    I have a feeling it's a similar diagnosis used by a few dermatologists as atypical facial pain is for maxfax and oral medicine. If they cannot find an organic reason it's nerves, stress etc.

    The whoke of the treatment plan for ATP with oral medicine in the UK is based around a two hour questionnaire to make you feel understood but no matter how you reply it ends up with that diagnosis.

    Designed by this Dr https://jnnp.bmj.com/content/72/suppl_2/ii27

    I wouldn't mind knowing everyone's suspected triggers.





    Sent from my WAS-LX1A using Tapatalk
    Last edited by Andrew P; 5th December 2018 at 01:37 PM.

  9. #39
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Andrew P View Post
    You seem to have trialed every drug possible and continue to try more I assume from this you have not put it in to remission?





    Sent from my WAS-LX1A using Tapatalk
    No remission. I would liken this condition to facial erythromelalgia, non-length dependent small fiber neuropathy and other chronic pain conditions etc -- for which the chance of full remission is very slim, the hope is just finding treatment to get symptoms under as control as possible.

    My triggers would be heat, chewing, leaning forward / backward, anything that increases heart rate (sympathetic nervous system spikes), the 3 pm flare, and the evening flare.

    My advice would be

    - to treat very aggressively -- instead of trialling treatments one by one, which might take many lifetimes, sometimes it's better to just throw the kitchen sink at the problem and then taper off one by one to see what works. Even if you find + treat the cause, neuropathic pain can still persist (the dysregulated ion channels on sensory nerves can still persist).

    - keep seeing many doctors and different types of doctors. They have a tendency to get "stuck" in a mindset and not realize it (even the best ones).

    Best wishes. This is a very misunderstood condition, and doctors tend to waste a lot of time recommending inappropriate treatments (anti-acne topicals, lasers, etc).

  10. #40
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    Quote Originally Posted by laser_cat View Post
    No remission. I would liken this condition to facial erythromelalgia, non-length dependent small fiber neuropathy and other chronic pain conditions etc -- for which the chance of full remission is very slim, the hope is just finding treatment to get symptoms under as control as possible.

    My triggers would be heat, chewing, leaning forward / backward, anything that increases heart rate (sympathetic nervous system spikes), the 3 pm flare, and the evening flare.

    My advice would be

    - to treat very aggressively -- instead of trialling treatments one by one, which might take many lifetimes, sometimes it's better to just throw the kitchen sink at the problem and then taper off one by one to see what works. Even if you find + treat the cause, neuropathic pain can still persist (the dysregulated ion channels on sensory nerves can still persist).

    - keep seeing many doctors and different types of doctors. They have a tendency to get "stuck" in a mindset and not realize it (even the best ones).

    Best wishes. This is a very misunderstood condition, and doctors tend to waste a lot of time recommending inappropriate treatments (anti-acne topicals, lasers, etc).
    How would you explain the timed flare? What are your symptoms before a flare?

    What's your current medications?

    Just curious.

    Sent from my WAS-LX1A using Tapatalk

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