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  1. Replies
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    Yes I agree about the nose being different....

    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...
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    nose flaring

    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%...
  3. My skin itself is fine / a non-issue; I tolerated...

    My skin itself is fine / a non-issue; I tolerated the cream fine
    Yes, flushing / burning threshold was raised in terms of external heat (not social flaring, or night flaring - which were worse)....
  4. It took ~2 weeks to return to baseline after a 2...

    It took ~2 weeks to return to baseline after a 2 week use, but I feel I was lucky in that regard. I want to stress that I only did this with derm guidance. I also did it while also on mexiletine,...
  5. I want to say my experience here. I deal with...

    I want to say my experience here. I deal with flushing/burning esp. in evening. I put on 0.025% capsaicin topical on one side of face for 2 weeks, 2x / day. And then a later trial of 5x/day for 2...
  6. one important thing to keep in mind is that the...

    one important thing to keep in mind is that the good effects (if you have them) of laser/IPL will be temporary, and you'll have to regularly get treatments as long as you want to maintain the...
  7. Replies
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    I take both. If I go down on either the...

    I take both.

    If I go down on either the flushing increases significantly and returns on my arms, torso, etc.

    I haven't noticed hair loss side effect personally.
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    Yes I take cymbalta 80 mg in the morning. It...

    Yes I take cymbalta 80 mg in the morning. It helps - ideally I would take 60 mg x2 so I could get help in the evening, but when I tried that (and it did help with evening) I had total insomnia. Makes...
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    I use compounded amitriptyline 6% / diazepam 2%...

    I use compounded amitriptyline 6% / diazepam 2% on the ears, 2x/day.
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    Hi owldog - I am still on plaquenil. It...

    Hi owldog -

    I am still on plaquenil. It doesn't really help my face but it does help my neck swelling / heat. No side effects. My understanding is this much weaker in potency than say Imuran. I am...
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    Yes I've tried several - anti-seizures are...

    Yes I've tried several - anti-seizures are topamax, tegretol, trileptal, zonisamide; topicals benzocaine 20%/lidocaine 6%/tetracaine 4%, amitriptyline 6%.

    For me the oral sodium channel blockers...
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    Anti-inflammatory / immunosuppressive route

    Had an interesting derm appt, would like to share. (some of this is repetitive)

    I asked: If SFN is driving my bad face, why don't my symptoms start/be more severe in the feet?

    He said...
  13. That's terrible about SSRI's, SNRI's worsening...

    That's terrible about SSRI's, SNRI's worsening your rosacea. One thing is ketamine iv for depression - my experience is that it blows the traditional pills out of the water. It can be done for...
  14. I would try clonazepam, gabapentin, baclofen for...

    I would try clonazepam, gabapentin, baclofen for stinging pain. Most things cause vasodilation for me so I can't tolerate gabapentin / baclofen but I think most people can. (Note: even LDN causes...
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    Yeah, thanks for posting about your experience. ...

    Yeah, thanks for posting about your experience.

    Recently a derm brought up possibility of trying elidel (similar topical). I asked him how this is different from protopic (I didn't even bring up...
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    I hate that you took it and you never recovered! ...

    I hate that you took it and you never recovered!

    Yeah, obviously not keen on the (rare) side effect of nerve damage ... But my swelling was so disabling that I couldn't make my doc appts...
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    I'm on an antibiotic now that helps the swelling...

    I'm on an antibiotic now that helps the swelling some. And it's still early. Docs think swelling is going to come back once I stop the antibiotic (oral metro) because it doesn't address root cause,...
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    If you're itchy I think worthwhile to get a trial...

    If you're itchy I think worthwhile to get a trial of soolantra or something "safe" for seb derm ... itching can happen with neur rosacea but why not cover bases, if you know what i mean..

    Flaring...
  19. There was an MD who published at least 2 papers...

    There was an MD who published at least 2 papers on EM, as a patient having EM. He was a psychiatrist if I remember right, so I don't think he used his MD at all really to do this. They were basically...
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    Propranolol is the only drug that helps with the...

    Propranolol is the only drug that helps with the emotional / increased heart rate flaring for me. For a long time I thought, I'd rather just deal with the flaring - not because my flaring is not...
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    Hey owldog- yes clonidine made my skin like...

    Hey owldog- yes clonidine made my skin like leather. Very dry, everywhere. I remember a wound took 8 mo or so to heal, when i thought it would take ~2 weeks! I tried to add a vasodilator to the...
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    i think with severe cases, laser might ......

    i think with severe cases, laser might ... create new blood vessels. That's just how it made mine worse - creating new blood vessels. I don't think a doc will ever say "no" to a rosacea patient,...
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    Yeah, with the MSM i went back to baseline. The...

    Yeah, with the MSM i went back to baseline. The big things that I did not go back to baseline were: clonidine and laser. Thank goodness I never used Mirvaso (thanks to things like this forum, I was...
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    MSM can thin the blood. It made my...

    MSM can thin the blood. It made my flushing/burning worse, consistently.

    If I take high dose aspirin, i get red dots all over my legs, I think blood leaking from capillaries, but they clear up if...
  25. Coping methods are personal. It is admirable that...

    Coping methods are personal. It is admirable that you re-evaluated yours and decided what needed to change to better enrich your life. But, do not write in a way that suggests others are not trying...
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