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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?...
  4. Thread: Nose pain?

    by laser_cat
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    5,736

    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...
  5. Thread: Nose pain?

    by laser_cat
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    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

    :)
  6. 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)
  7. Thread: Nose pain?

    by laser_cat
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    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...
  8. Thread: Nose pain?

    by laser_cat
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    5,736

    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...
  9. Thread: Nose pain?

    by laser_cat
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    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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    CBD topical decreased my flushing threshold...

    CBD topical decreased my flushing threshold dramatically (bad). Oral CBD i think did the same, but at least it didn't burn my sensitive skin. Lots of CBD topicals come with other stuff like menthol,...
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    That's great. I hope it continues to work for you...

    That's great. I hope it continues to work for you . And even better at the higher dose.

    I got a blister from laser years ago and it is otherwise a very sensitive spot on my face. I feel like the...
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    brain zaps happen with any SNRI or SSRI as you...

    brain zaps happen with any SNRI or SSRI as you taper off (can happen). Not a side effect as you go up or are on them. FOr me only an issue a month while I was down to 0 mg. It's like when you read...
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    How are you doing with the ketotifen Boris? My...

    How are you doing with the ketotifen Boris?

    My doc just called in an rx to a compounding pharm nearby.

    Thanks.
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    I like it. It helps me so much and I'll happily...

    I like it. It helps me so much and I'll happily be on it for life. Just start slow. I've weaned off a couple times and it went ok as long as it was a slow taper - especially when you get near 0. I...
  15. Thread: rhinophyma

    by laser_cat
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    I agree it is best to talk to a doc about...

    I agree it is best to talk to a doc about accutane for rhynophyma. I THINK: It can reverse some of it if not too severe and possibly limit progression. I asked my doc about limiting progression of my...
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    Not to hijack this thread when I'm not the OP - ...

    Not to hijack this thread when I'm not the OP -

    quick update -

    I cannot tolerate any accutane without other anti-inflammatories like flagyl in the background. I've been on/off flagyl enough...
  17. That's interesting. I definitely dont have mites...

    That's interesting. I definitely dont have mites as my issue, as i did ivermectin (oral) course. Glad i did it tho as it is low hanging fruit.
    I actually was specifically not rx'ed Minocycline since...
  18. I'm so sorry. I wish the impact of rosacea,...

    I'm so sorry. I wish the impact of rosacea, flushing, and similar were more well known by doctors

    CTD = connective tissue disease, like lupus or dermatomyositis. There are others. Best to see a...
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    So sorry for your mother

    So sorry for your mother <3 Sending thoughts for peace and comfort your way.

    I am glad it helped you so far. keep up the updates ... but take care of yourself first xx

    I'm on the fence about...
  20. Well, i would think you'd have to fly out every...

    Well, i would think you'd have to fly out every month :p I think you could find a local doc if you look enough. Youve tried large teaching hospitals? My impression is maintenance doses are not...
  21. Thanks for understanding! I'm sorry about you...

    Thanks for understanding! I'm sorry about you being housebound. Similar boat for me. Very very debilitating over here.

    Also, we are smart cookies lol who know our condition - wish docs would...
  22. Ugh just read something from my local doc - she...

    Ugh just read something from my local doc - she thinks 5 mg / day of accutane won't do anything - that I need 40 mg / day for my weight of 45 kg (huh?). It's frustrating how I'm not listened to out...
  23. Thanks for explaining all that. Sorry you've been...

    Thanks for explaining all that. Sorry you've been dealing with skin issues for so long. I'm glad accutane helped you for as long as it did.

    My docs in CA have realized I'm a very difficult case...
  24. I just cut 10 mg capsules with scissors, save the...

    I just cut 10 mg capsules with scissors, save the other half in the fridge or throw it away. Hopefully that doesn' alter the efficacy of anything. Getting them out of the over-the-top packaging is...
  25. My derm also rx'es accutane for lupus - starts at...

    My derm also rx'es accutane for lupus - starts at 10 mg / wk or so for that and goes up. Just an fyi! Glad you are finding it ok so far! I still have to find my dose, or combination with antibiotic /...
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