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Thread: Help please - severe neurogenic rosacea

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    Default Help please - severe neurogenic rosacea

    Hi I have been seeking assurance from this forum for a couple of years, since my mothers neurogenic rosacea became debilitating. It seems to be a winter (cold weather) induced flushing/burning/swelling condition which is only ok if she is at 25 degrees Celsius or higher with warm nights (not possible all the time here). As I am in the Southern Hemisphere and it is nearly summer, she has been getting better but still mainly confined to home. She got an ipl or laser treatment 5 days ago, and is now much worse than sheís ever been with swelling, burning and blood rushing to her face. Iím quite desperate trying to figure out what to do, she hasnít slept for days and has to constantly spray water on her face as it is boiling hot. Iím going to call the cosmetic surgeon tomorrow to check what she used, has anybody experienced an intense reaction to this treatment? Obviously I need to know more about what machine it actually was, but apparently it does whole sections of the face at a time - not specific areas. Any help is appreciated.

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    Oh no... sorry to read I just read up a lot on neurogenic rosacea (have it myself too) and apparently IPL or laser are said to be tricky, as people with neurogenic rosacea have a heightened sensitivity to heat and sunlight, and IPL can trigger their rosacea in fact instead of treat... Shock to me too, I had IPL back in 2005 and it made mine much much worse unfortunately.

    In this research paper on neurogenic rosacea, scientists said:
    "Finally, patients with dysesthesia out of proportion to flushing or inflammation can be difficult to treat and require a unique approach first used to treat disorders such as complex regional pain syndrome and neuropathic itch. [..] Because of the associated heightened sensitivity to heat and sunlight, laser- and light-based interventions should be used with caution."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3692271/


    I had the same reaction as your mother seems to be having after my IPL, I wrote about it here; http://scarletnat.blogspot.com/2012/...l-in-2005.html

    But the first 3 weeks after an IPL treatment (or laser) are often volatile weeks, where the skin has to recover from the treatment and new vessel growth signals are given by the body, which triggers flaring for many who had IPL. In most cases, things settle down after that period. I hope your mums skin reactions settle down too then! Best to keep the face cool and use a fan perhaps or air conditioning. At the time I took diclofenac pills (from the dermatologist) to control some of the post-treatment inflammation. There are other meds that can help with inflammation too for the weeks post treatment... Sorry for this distress

    best wishes Nat

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    Anti-flushing medications are likely to help your mum recover especially if the flushing persists, such as clonidine, moxonodine, hydroxychloroquine, mirtazapine and mepacrine. I would try to find a doctor who can at least prescribe clonidine or moxonodine for rosacea. This will reduce the worst of the flushing hopefully. Unfortunately, unlike with the IPL machines, doctors do not have a financial incentive to treat rosacea using such blood pressure medications (they don't cost much however to the patient unlike IPL or laser).

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    Quote Originally Posted by Vmar View Post
    Hi I have been seeking assurance from this forum for a couple of years, since my mothers neurogenic rosacea became debilitating. It seems to be a winter (cold weather) induced flushing/burning/swelling condition which is only ok if she is at 25 degrees Celsius or higher with warm nights (not possible all the time here). As I am in the Southern Hemisphere and it is nearly summer, she has been getting better but still mainly confined to home. She got an ipl or laser treatment 5 days ago, and is now much worse than she’s ever been with swelling, burning and blood rushing to her face. I’m quite desperate trying to figure out what to do, she hasn’t slept for days and has to constantly spray water on her face as it is boiling hot. I’m going to call the cosmetic surgeon tomorrow to check what she used, has anybody experienced an intense reaction to this treatment? Obviously I need to know more about what machine it actually was, but apparently it does whole sections of the face at a time - not specific areas. Any help is appreciated.
    My derm who co-authored that paper linked by Nat, and has seen ~15 patients with neurogenic rosacea (he says it is obvious to him what is neuro vs vascular/ who would benefit from laser) says a lot of his patients are made worse by laser, if not triggered by laser. He doesn't know why. Maybe the settings were increased to something the patient couldn't handle. But he doesn't think it is the laser so much as their body wasn't able to handle it, I think? Like it brought out an underlying condition?

    He strongly thinks that the redness seen in neuro patients - is the tip of the iceberg and its due to dysfunctional neuronal regulation and hyperexcitable sensory nerves. He has urged me to focus on treatments not that control the blood vessels, but that help calm the overactive nerves. After 2-3 years of obsessively reading + thinking about my symptoms, he has convinced me. I was later diagnosed via leg biopsy with small fiber neuropathy (non length dependent) -- the nerves degenerate for whatever reason, and become hyperexcitable as your body tries to grow them back (something like that). Usually small fiber neuropathy is associated with feet or hands (diabetes eg), but my derm thinks that this is what is going on with his neuro rosacea patients. Biopsies are only standardized in the leg (not face) so this cannot be confirmed (except sometimes if it is in the face or other areas, it will show up in the leg as well), but it would prove a sensory nerve dysfunction association and make sense.

    I would ask a rheum to do a full workup (incl. possibly a Sjogren's lip biopsy .. an autoimmune condition), and consider asking for an SFN punch biopsy in a leg (derm or neuro can do this) + neurodiagnostic testing (tilt table, sweat, pupils etc). Sometimes the cause of SFN can be treated and symptoms cured (~50% of cases) eg b12 deficiency, hepatitis, lyme, sjogrens (lip biopsy is best for sjogren's .. sjogren's is the most common cause of non length dependent SFN). ANd new evidence says that in a significant minority of idiopathic SFN cases, they are "apparently autoimmune" without any autoimmune markers that docs yet know how to detect, and will respond to aggressive immunotherapies like IVIG, steroids, plaquenil (something like inflammation is continually angering the nerves, triggering pain + dilation). I needed a positive SFN biopsy in order to have IVIG approved for my insurance.

    I hope you get relief for your mom. Even if you can't find any answers or more insight as to what's going on, there are lots of ways to treat it. Imo, all the meds in that paper are worth trying. I get relief from cymbalta 80 mg in the morning, mirtazapine 22.5 mg at night (for sleep), zonegran (a sodium channel blocker and t type channel blocker ... stabilizes sensory nerves). Currently ramping up on the zonegran, trying IVIG (super anti inflammatory infusion), and low dose naltrexone in case i have autoimmune origin. If I fail IVIG, I probably will trial (oral or iv) steroids (my derm says a couple of his neuro patients do respond to, though it's tricky because they can cause flushing as a side effect). I see a pain doc and we are working to get lidocaine infusions every other day approved by my insurance to "reset" the nerves (lidocaine is the best thing i have found that makes me more heat tolerant ... acts on nerves, but blocks pain and flushing both). If that doesn't work, then maybe ketamine iv's. I think a pain doc can be great, but might not be worthwhile if you have not yet tried the first line treatments like amitriptyline, cymbalta, gabapentin, lyrica. Basicallly I just want to say, there is hope and many things your mom can try -- i wish someone had told me that when i thought treatments were limited to soolantra, gabapentin, and more laser to correct the laser mishaps (I had a derm suggest this for me ... don't do this .. ) Bless you for trying to help your mom. I feel for you both.

    good luck and keep us updated

    ps - i really think neuro rosacea is another word for facial erythromelalgia. All the stuff out there on erythromelalgia applies.

    edit 1 - i did not see she got an IPL only 5 days ago. I think there is a good chance your mom will heal with time. sometimes it takes even a few months. so, def. no need to panic that said, sometimes patients are given lyrica / gabapentin after a surgery to prevent neuropathic pain or pain from spiraling out of control ... someone can always come off them in the future if they don't think it's necessary or it's not working out.

    edit 2 - i also get relief from botox purposed for neurogenic inflammation / neuropathic pain (treats swelling the most, then flushing some, then nerve pain but not as much as I would like). ~100-200 units every 3 mo. This has been the best thing for my night flushing specifically
    Last edited by laser_cat; 4th November 2018 at 11:46 PM.

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    Thanks for all your help! I tried to respond but it hasnít gone through. Iíll wait and see...

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    Ok that seemed to work but my other one didnít. I found out the laser is a quanta system 585, does that mean anything to any of you? Weíve got an appointment with a neurologist on Friday so Iím going to raise flushing meds then, I know sheís tried gabapentin and clonidine at least. Have any of you heard of PEA for reducing inflammation? The chemist thought we could try that and then maybe ketamine amitiptyline but I think Iíll have to ask the neurologist about that as well as botox, not sure if heís experienced in this condition... Iíve just got some gel eye pad things because sheís worried her eyes will swell shut. Thank you all for your support :-)

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    Quote Originally Posted by Vmar View Post
    Ok that seemed to work but my other one didn’t. I found out the laser is a quanta system 585, does that mean anything to any of you? We’ve got an appointment with a neurologist on Friday so I’m going to raise flushing meds then, I know she’s tried gabapentin and clonidine at least. Have any of you heard of PEA for reducing inflammation? The chemist thought we could try that and then maybe ketamine amitiptyline but I think I’ll have to ask the neurologist about that as well as botox, not sure if he’s experienced in this condition... I’ve just got some gel eye pad things because she’s worried her eyes will swell shut. Thank you all for your support :-)
    I hope the neurologist is helpful. I'd ask him about SFN and non length SFN / facial erythromelalgia. There are a few case studies, although it is a a controversial diagnosis (usually applied to feet). However if he is aware of the research by Anne Oaklander (US neurologist), he should be (eg the woman in fig 1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720682/ has "facial EM").

    I have tried gaba and clonidine and they didn't work for me. It does take a while for the gaba to build up in the system and to ramp up to appropriate dose and for anything to start to hack away at the pain circuit though (on the order of months). Lyrica might be better - it is more potent than the gabapentin, but it is more $$ (no generic)

    The botox I get is applied very superficially, just below the surface of the skin so that it can go into the sensory nerves / c fibers and block flushing / pain / swelling. (it doesn't go into muscles or cause paralysis, ie not for wrinkles etc) A lot of injections very close together. Didn't notice anything until 2 injection rounds.

    The analgesic topicals are worth a try (easiest way to treat ...) but my derm thinks they don't work well for neuro rosacea. Start at low %'s of amitriptyline / ketamine (higher %'s can cause huge reactivity of blood vessels, at least it did for me..) The topical is usually given for EM as first line, but i think most people do not respond in that context either. For some reason i respond to lidocaine iv but not to topical or patch form.

    I hope the eye swelling improves as she can heal from the laser tx. Maybe ask your doc what the max dose of NSAID's are to take temporarily?

    best

    edit - I know of a few people who benefit from PEA for their EM. It takes a couple of months to have an effect. Alpha lipoic acid (also used in pain / inflammation contexts .. esp neuropathy) might be helpful too.

    edit 2 - in case this is helpful, what my doc wrote in his notes one time :

    "Neurogenic rosacea, severe, uncontrolled. We counseled the patient about the etiology of this condition, which is driven by vasomotor activity and the neurovascular networks. For the flushing component, we recommended beta-blockers as first-line treatment. For the neuroleptic component, we recommend a combination of mexiletine, doxepin, gabapentin, pregabalin, Cymbalta, and baclofen; there is no standard "most effective combination," and it often takes several months to determine the most appropriate regimen for each individual patient due to the diverse mechanisms and symptoms of this disorder. <specific instructions on gaba, lyrica, doxepin ramp-ups> Once the erythromelalgia component has improved, we would prioritize treating the vascular component with propranolol 60 mg PO ER to start. The extended-release formulation provides more consistent coverage throughout the day."
    Last edited by laser_cat; 5th November 2018 at 06:42 PM.

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    I find a combination of blood pressure and nerve focused drugs helps best. The other reason why blood pressure medications are favoured as a first option is because they tend to have less severe potential side effects compared to, for example, hydroxychloroquine (Plaquenil), mirtazapine and Cymbalta.
    Last edited by antwantsclear; 5th November 2018 at 11:52 AM.

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    Quote Originally Posted by Vmar View Post
    Ok that seemed to work but my other one didn’t. I found out the laser is a quanta system 585, does that mean anything to any of you? We’ve got an appointment with a neurologist on Friday so I’m going to raise flushing meds then, I know she’s tried gabapentin and clonidine at least. Have any of you heard of PEA for reducing inflammation? The chemist thought we could try that and then maybe ketamine amitiptyline but I think I’ll have to ask the neurologist about that as well as botox, not sure if he’s experienced in this condition... I’ve just got some gel eye pad things because she’s worried her eyes will swell shut. Thank you all for your support :-)
    I was treated with the Quantum IPL machine in 2005. It was a drama for me. And an old type of machine, I was later told by the great Dr. Crouch. If a shallow filter was used (560 filter for instance), most heat is shot into your upper epidermis with more risk of inflammation and setting the skin and vessels off according to Dr Crouch. I had single 560 (shallow) filter treatment back then. Of course, many people here (in the past) had good results with the Quantum machine so it's not all doom and gloom, but also not the best machine out there I would say

    For me anti flushing medication also is effective. Not everyone reacts well to them but a good lot of flushers in this group can handle clonidine and beta blockers well. They can really take the worst off the flushing and burning for some people (I take clonidine, propranolol, low dose mirtazapine and an antihistamine with some success..). Agree with antwantsclear that if someone can tolerate clonidine or a beta blocker like propranolol or atenolol / carvedilol, these can give quick results with relatively few side effects. Same for antihistamines (not benadryl which is very sedating, but new types like Xyzal are great). Clonidine is a bit of a mystery for me nowadays, also after Laser_cats bad reaction to it and it seems not every flusher benefits from it, but it is a 'first line' flushing medication nowadays together with beta blockers, so perhaps worth a try? With burning of the face, reducing the flushing and redness is one important step in reducing the nerve pain.
    Last edited by nat007; 5th November 2018 at 02:11 PM.

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    Quote Originally Posted by nat007 View Post
    I was treated with the Quantum IPL machine in 2005. It was a drama for me. And an old type of machine, I was later told by the great Dr. Crouch. If a shallow filter was used (560 filter for instance), most heat is shot into your upper epidermis with more risk of inflammation and setting the skin and vessels off according to Dr Crouch. I had single 560 (shallow) filter treatment back then. Of course, many people here (in the past) had good results with the Quantum machine so it's not all doom and gloom, but also not the best machine out there I would say
    Slightly off-topic: I had IPL 2 days ago and I cited some comments made by the late Dr Crouch to my clinician who performed the IPL. He had heard of him, and it turns out, was taught by him.

    He was saddened and shocked to hear of his sudden passing back in 2016.
    I'm recovering from Mirvaso-induced skin damage. Ask me about it if you are too.

    • Read about my PDL and IPL, with videos.

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