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Thread: Painful burning- possible hormone connection?

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    Default Painful burning- possible hormone connection?

    I have extremely painful burning that occurs both with and without redness. Nothing seems to put a dent in the pain. It sometimes seems connected to hormonal fluctuations. Iím trying Yaz (second month) and Spiro (3 days, low dose) to see if I could control the hormonal fluctuations but so far the pain might be even worse (although the breakouts have diminished). Anyone with a similar experience? Anything work for you? I asked my dermatologist and she said she had never heard of it for rosacea and any topical thing she would normally prescribe would just make my rosacea worse. So basically she said- live with the fact that it feeeps like someone poured acid on your face sometimes. :P

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Chai View Post
    I have extremely painful burning that occurs both with and without redness. Nothing seems to put a dent in the pain. It sometimes seems connected to hormonal fluctuations. I’m trying Yaz (second month) and Spiro (3 days, low dose) to see if I could control the hormonal fluctuations but so far the pain might be even worse (although the breakouts have diminished). Anyone with a similar experience? Anything work for you? I asked my dermatologist and she said she had never heard of it for rosacea and any topical thing she would normally prescribe would just make my rosacea worse. So basically she said- live with the fact that it feeeps like someone poured acid on your face sometimes. :P
    Chai - birth control made my flushing/ burning about 50% worse (tried xulane and nortrel).

    I have said it feels like acid on the skin myself ... So sorry your are dealing with this but my recommendation is to try some of the treatments listed here


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

    and also look into erythromelalgia papers/groups. First line is usually trileptal, mexiletine, cymbalta, amitriptyline, lyrica, gabapentin (to control nerves) .. combined with a beta blocker or vasoactives like propranolol, clonidine (to control blood vessels). And then this might be combined with anti-inflammatories as well like plaquenil, low dose naltrexone. If none of this is effective, ask for a referral to a pain doc (and perhaps a neurologist) at a large hospital, who can then offer you "off-the-menu" options like nerve blocks (stellate ganglion, trigeminal), botox, lidocaine infusions, ketamine infusions, IVIG, pulse steroids. The pain docs would likely be the most knowledgable (dealing with pain / acid-like sensations is not going to be a derm's forte) but it might not be worthwhile to visit one unless you've failed the first line treatments.

    I do not believe that the root is hormonal, but rather we might have damaged nerves (c fibers / sensing nerves) that will amplify any signal telling the blood vessels to dilate (like estrogen or histamine or whatever), in addition to transmitting pain to the brain. I too can have severe pain when I am not actively flushing -- when I am like this I think the vessels are too overly constricted, starving the nerves of oxygen, which is painful but a slightly different sensation than the burning I get when I am actively flushing. I would call the pale pain maybe an "electric shock, pins/needles" burning, and the flushing pain a "pulsing, stabbing" burning maybe?

    I would also ask for an autoimmune panel if you haven't yet + have workup for mastocytosis, carcinoids, etc (all known causes of flushing). But the nerve pain is hard to treat and might get more refractory with time, so I would really try meds for that soon. You can always come off of them if they're not a good fit.

    hope some of that helps
    Last edited by laser_cat; 11th September 2018 at 02:05 AM.

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    Thank you so much for all of the suggestions! One of my doctors wanted to prescribe Effexor. I wonder if that would have a similar effect to Cymbalta.

    Did you find any of these helpful for your pain?

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    I am on Clonidine already, and it does help the flushing.

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    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Chai View Post
    Thank you so much for all of the suggestions! One of my doctors wanted to prescribe Effexor. I wonder if that would have a similar effect to Cymbalta.

    Did you find any of these helpful for your pain?
    I have tried effexor and cymbalta each - for me the norepinephrine reuptake inhibition for both facilitates some vasoconstriction. If I wasn't on an SNRI I would be flushing/burning 24/7 and wouldn't be able to sit down. The effexor is more like an SSRI at doses under 150 mg so I wouldn't give up if it doesn't work for you in the beginning at lower doses. The vasoconstriction might be a little more noticeable with the effexor than the cymbalta but not much (maybe why effexor is more known to have high bp as a side effect ..). My experience is that cymbalta helps more with nerve pain. There is a paper out there that says that cymbalta at 60 mg can block sodium channels (like amitriptyline or lidocaine) and maybe this is why (sodium channels might be instrumental in pain transmission .. people with sodium channel loss-of-function mutations have an inability to sense pain .. people with gain-of-function sodium channel mutations have lower thresholds in sensing heat + pain both .. ). My doc said that she will give 120 mg+ on cymbalta for nerve pain though. I am on 80 mg cymbalta and do well.

    Norep. reuptake inhibition in the brain can also help with nerve pain via descending inhibitory pathways. I like the SNRI's because they are less sedating than the anti-epileptics generally, but everyone's different

    I am also on mirtazapine 22.5 mg -- and I think by being an alpha 2 adrenoceptor blocker, it might help with some subtle vasoconstriction (I notice if I miss a day) but imo not as much as the SNRI's.

    I am also on atenolol but think propranolol works better (I personally can't tolerate propranolol) for flushing, plaquenil (doesn't help much personally but helps for sun sensitivity). It's really trial and error unfortunately and everyone responds differently (clonidine didn't work for me).

    I am considering trying trileptal (sodium channel blocker and common drug for trigeminal neuralgia) and memantine (sort of an add-on pain drug ... not sedating).

    Hope you feel better soon

    PS - I'm curious if you had the non-flushing nerve pain before clonidine?
    Last edited by laser_cat; 11th September 2018 at 07:34 PM.

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    Yep, I had the non/flushing pain before clonidine. I have had the pain - flushing or not- since I first got this in January. I have periods of time when itís rare and then weeks where itís every day. If I could get rid of the pain, I feel like I could at least ďignore itĒ sometimes.

    Thanks for all of the great information! My mom did poorly on cymbalta but of course thatís no guarantee it would bother me, I have thought about doing one of those genetic tests to see which one might work best.

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    Also- I often get the pain after eating. Even if I donít flush.

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    Hi Chai, I just wanted to add myself to your thread because for me, my primary rosacea trigger is hormones. At my worst, I would get full-on flare-ups at ovulation and during PMS. I've been undergoing treatment for 1 month so far and this month has been markedly better but I'm afraid to draw any conclusions because my period is now late and I'm wondering if I may skip it this month entirely (I've done that a few times) making it very hard to determine what / when / if my usual ovulation/PMS pattern happened at all!

    My dermatologist is against using BCP for this, which, quite frankly, I'm glad about, since I've been on a few of them over the years and hated them all. In my case the symptoms of a flare-up are painful peeling, bright purple-red color, and loads of pustules. I really have very little wisdom on it because I'm still at the beginning of my attempt to bring it under control and like I said, THIS month is a case of "who the heck knows what is going on" but, at the very least, hormones as a rosacea trigger is definitely a real thing in my case.

    I hope you get relief from the pain.

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    Thank you for your response! Mine seems to flare at the same times- ovulation and up to a week before my period. I canít telk for sure if the pill is helping or making it worse. I think itís helping the breakouts which also usually followed that pattern.

    What treatment are you trying?

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    Although I went to the derm barely a month ago, I've actually already had quite a lot of drugs and topicals! Let me see... so far things I've been on (I'm not still supposed to use all of these) --

    - doxycycline 50mg/day (or 2x/day) by mouth -- did this for 2 weeks, then stopped
    - probiotics and prebiotics (taken for as long as I was taking doxycycline)
    - clindamycin 1% lotion (Dalacin C by Pfizer) 1x or 2x/day
    - metronidazole 0.75% gel (Metrogel by Galderma, called Robaz in my country) 1x/day but was too irritating so now I'm to mix it into my moisturizer and use only 3x/week to start
    - octenidine hydrochloride antiseptic spray 1x or 2x/day (Octenisept)
    - fucidic acid 2% cream (an antibiotic cream usually used for burns)

    ^ Most of this was not rosacea-related. Most of this was my dermatologist's rather desperate attempt to prevent my skin from being infected, due to the severity of the flare-up I had in early August.

    I also have the following non-prescription topicals on doctor's orders:

    - Bioderma Hydrabio micellar water 2x/day as a face wash (I use the cheaper Bioderma Sensibio to remove makeup)
    - Uriage DS Emulsion 2x/day moisturizer formulated for seborrheic dermatitis
    - Avene thermal spring water spray (as many times/day as I want)
    - tea tree essential oil (diluted into moisturizer) -- this was too strong, I had to stop it almost immediately, as it provoked a massive demodex die-off, but that was probably a great help overall because it reduced the demodex population so much that this month I've had pretty much no sign of demodex at all
    - Bepanthol pro-vitamin B5 cream

    My current regimen consists of clindamycin 1% lotion 2x/day, Octenisept spray 1x/day, Hydrabio water 2x/day, Uriage moisturizer 2x/day, Avene spray 2-3x/day.

    It sounds like a lot but it's not that bad. Almost none of this stuff is really meant to help rosacea, per se. It's more just to help my skin heal and keep things as quiet as possible for a little while. My derm knew I was attending a wedding this month and didn't want to do anything too "dangerous" so we're waiting a bit before we try anything really aggressive. I haven't even started the metronidazole again yet.

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