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  1. Momof, I sympathize with you on doctors not...

    Momof, I sympathize with you on doctors not willing to treat. Surely you could titrate low dose accutane and be "ok". Like I would notice within 2 doses of 2,5 mg twice a week, whether I could...
  2. I'm sorry you have increased symptoms. I had...

    I'm sorry you have increased symptoms.

    I had this https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/75139

    So i think that is mainly the pro inflammatory cytokines - not...
  3. Thread: Nose pain?

    by laser_cat
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    6,708

    edit - I would definitely get confirmation from a...

    edit - I would definitely get confirmation from a good derm on your diagnosis though. In hindsight I sort of regret stacking antibiotics (esp. one of them incompatible with accutane) as I have...
  4. Thread: Nose pain?

    by laser_cat
    Replies
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    6,708

    Honestly, I'm not sure if my specific abx will be...

    Honestly, I'm not sure if my specific abx will be helpful for anyone or just a wild goose chase bc we all seem to respond differently, including to abx. i will say you can't take tetracyclines (doxy,...
  5. Wow, I'm surprised it would help rosacea. I think...

    Wow, I'm surprised it would help rosacea. I think if i remember right, it's a TRPV1 activator which is already overly active in rosacea subtypes. In theory it could desensitize this receptor over...
  6. Thread: Nose pain?

    by laser_cat
    Replies
    51
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    6,708

    2 full dose rosacea abx. It isn't gone but much...

    2 full dose rosacea abx. It isn't gone but much better than it was.

    To move lymph - it's massage (you can find a professional lymph massage at a hospital perhaps), accutane (low dose if you also...
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    I would do patch testing and see an allergist in...

    I would do patch testing and see an allergist in addition to dermatologist. THere are different levels of patch testing, depending on the number of allergens. I think only NYU offers the most...
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    Yeah, I know what you mean and watched some...

    Yeah, I know what you mean and watched some videos on this. But could never see benefits when I did it myself. I might retry. Thanks. I feel pressure in almost exactly where the lymph "lines" are -...
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    Sometimes hospitals / derm clinics at hospitals...

    Sometimes hospitals / derm clinics at hospitals can refer you to phyiscal therpapists to help with lymph drainage. I would do this myself but it is too painful to touch my face.
  10. Thread: Pain in face

    by laser_cat
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    gabapentin is first line for nerve pain. It...

    gabapentin is first line for nerve pain. It caused swelling / increased flushing for me - one of the rare side effects of it. But many tolerate it ok. Many also don't respond. Nerve pain is hard to...
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    https://www.dermatologytimes.com/view/current-and-...

    https://www.dermatologytimes.com/view/current-and-upcoming-topicals-in-the-pipeline-for-ad

    Here are some other anti-inflammatory topicals. I don't know if they'd be applicable to rosacea. Knowing...
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    It's a broad-acting anti-inflammatory that peaks...

    It's a broad-acting anti-inflammatory that peaks in 6 mo I think. I was put on it, but the folic acid that you have to take with it, made me itch / swell, but I think I'm really sensitive to all b...
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    There was a paper on how some authors treated...

    There was a paper on how some authors treated topical vasoconstrictor rebound - something like antibiotic, low dose accutane for the plaques, and finally some IPL. It was really sad I thought but...
  14. Sticky: Thank you for making this available as well as...

    Thank you for making this available as well as your other sites, over all these years. The other platforms currently out there just aren't the same.
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    Want to quickly (maybe not so quickly..) update....

    Want to quickly (maybe not so quickly..) update. After trying all these things, I believe it was a huge mistake not to try a full dose rosacea antibiotic, and maybe even another in a different class...
  16. Just fyi those links don't work. (the 2 after the...

    Just fyi those links don't work. (the 2 after the yelp one)
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    I would only see a full professor (not assistant...

    I would only see a full professor (not assistant prof) at a university teaching hospital. THere are some people so severe / complex that they need doctors and the patient needs to be an expert in...
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    Thanks Brady. I'm a little amused by these MD...

    Thanks Brady. I'm a little amused by these MD JD's .... "decided to have both in my pocket, just in case". I used to work for one, very eccentric guy. I understand MD PHD but not MD JD ...
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    derms in US for rosacea?

    Who is best? Like, reallllly knows the ins/outs of rosacea (like a Steinhoff). And refractory cases.

    Does anyone see a derm at NYU Langone? (I'm headed there next)

    Any other major universities?...
  20. Thread: Nose pain?

    by laser_cat
    Replies
    51
    Views
    6,708

    Thanks for the update. Yeah, i thought accutane...

    Thanks for the update. Yeah, i thought accutane helped with temp tolerance / pain for me as well. Was very pleasantly surprised. My mom later told me she thought it increased redness in the beginning...
  21. Thread: Nose pain?

    by laser_cat
    Replies
    51
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    6,708

    Yes I am also called a "difficult patient" (wait...

    Yes I am also called a "difficult patient" (wait ... "difficult patient", "very assertive patient", or "difficult condition" ? :) ) Doc said it with a note of resentment in his voice, heh

    :)
  22. Did stanford let you be part of the study even...

    Did stanford let you be part of the study even though you didn't have p+p?
    Stanford is offering me Cosentyx (post-study)
  23. Thread: Nose pain?

    by laser_cat
    Replies
    51
    Views
    6,708

    I have tried accutane and it helps with the...

    I have tried accutane and it helps with the edema. If you flush you have to be super careful. I tried it too high of a dose due to an overzealous doctor I am kicking myself to listening to. And...
  24. Thread: Nose pain?

    by laser_cat
    Replies
    51
    Views
    6,708

    keep in touch, momof. Yes i'm on 120 duloxetine...

    keep in touch, momof. Yes i'm on 120 duloxetine and it helps. Weirdly it helps with the flushing and swelling not just pain for me.

    I'm layering antibiotics now, with ketotifen. Trying minocycline...
  25. Thread: Nose pain?

    by laser_cat
    Replies
    51
    Views
    6,708

    So I've noticed this more with myself - pressure...

    So I've noticed this more with myself - pressure on the sides of the bridge of the nose. Not sure if it is similar to anyone else. I notice with some meds it can feel like it drains out a bit and...
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