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  1. Replies
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    Thank you - even though my nose has gotten a lot...

    Thank you - even though my nose has gotten a lot better (knock on wood ..) I will try the Nasalcrom for a longer time frame and 4x/day.

    I've tried gastrocrom (I think nalcrom?) and it didn't do...
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    Although I am a pain-sensitized patient, I think...

    Although I am a pain-sensitized patient, I think for refractory flushers who might not be pain-sensitized, they might also benefit from agents that target the neuronal control of blood vessels.
    ...
  3. For me I would have rebound on the days I don't...

    For me I would have rebound on the days I don't take it. But check w/ your doc and it may depend on the person. I currently take the IR as needed - this means about 2x / wk.
  4. Peak blood levels with the ER occur at ~6 hrs...

    Peak blood levels with the ER occur at ~6 hrs after taking the pill. My experience with the ER is that it does take time to build up in the system - like 1-2wks of taking 60 mg ER daily. My doc told...
  5. botox typically kicks in 1-2 wks for me. This is...

    botox typically kicks in 1-2 wks for me. This is for baseline redness, afternoon episode, and evening episode. At my most recent appt my derm said botox would not help with social flushing (I had...
  6. I just don't touch my face and take ibuprofen for...

    I just don't touch my face and take ibuprofen for the extra inflammation-induced pain I get. GOod luck!
  7. I would have no problem covering with makeup...

    I would have no problem covering with makeup after maybe 4 days (i just personally do not tend to wear makeup). When I have lots of little injections everywhere, downtime is the longest (1 wk). I...
  8. I don't really have a sense about this. It takes...

    I don't really have a sense about this. It takes about a wk for me to heal from botox, although that does depend on the number of injections.

    I'm also in the US and btw moxonidine is not...
  9. I still do botox and find it specifically...

    I still do botox and find it specifically (partially) helpful for "time of day" flushing. Not at all helpful for anxiety flaring unfortunately.
  10. I personally found 60 mg propranolol ER / day or...

    I personally found 60 mg propranolol ER / day or higher to specifically help with social / anxiety flushing/burning for me, maybe 90%+. Unfortunately that wasn't one of my goals really ("time of...
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    I do not take the buprenorphine currently due to...

    I do not take the buprenorphine currently due to side effects (brain fog) though I admittedly I never tried to see if I could get away with the smallest dose possible. I do not take LDN currently...
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    I would ask your doctor? Ibuprofen helps my...

    I would ask your doctor?

    Ibuprofen helps my neck pain a lot (i think due to poor sleeping posture trying to keep the flushing/burning happy..) but generally does not affect my cheeks/ears either...
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    Hi! Yes it may have been me re: the 4.5 mg! I had...

    Hi! Yes it may have been me re: the 4.5 mg! I had tried it at 4.5 mg for 4-6 wks and I concluded it made me worse. Later on I had tried it at 2.2 mg (half that) and concluded it made me worse as...
  14. My experience in taking a dose of propranolol (eg...

    My experience in taking a dose of propranolol (eg 20 mg) or any similar (peripheral) vasoconstrictor (imitrex, excedrin, clonidine) during a bad flush caused by any reason - is that it *will* help to...
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    Yes, I might try it suuuper low instead of...

    Yes, I might try it suuuper low instead of starting at 4.5 mg or half a 4.5 mg ... I have wondered the same thing :) Things are actually stabilizing enough for me that I am hopeful about going back...
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    26,442

    I am so glad whenever I hear someone improving...

    I am so glad whenever I hear someone improving from this horrible condition. Keep it up! And in the Florida heat no less (couldn't imagine ...) As I was one who scanned forums obsessively looking for...
  17. I've only come across 2 derms (out of a dozen?)...

    I've only come across 2 derms (out of a dozen?) to not like mirvaso ... the first was a laser doc and I think it was only because she wanted to sell laser :) The second actually had used mirvaso...
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    I recently started going to chronic pain...

    I recently started going to chronic pain psychotherapist which I think is helpful. wish i did this sooner.

    I always ask my doc how long I should trial a med before giving up. Usually it's at least...
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    I've tried pregabalin. I think it is a good thing...

    I've tried pregabalin. I think it is a good thing to try for nerve pain. It did not help me but pls dont let that deter you. Something like, 150 mg for 4-6 wks (but with some rampup to 150 mg) to...
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    I am not sure! But it's interesting to think...

    I am not sure! But it's interesting to think about! A derm once told me that LDN is sort of a "plaquenil" - helping with pain and inflammation.

    There are 2 known major ways LDN acts - blocking...
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    For sure keep us updated. :) Yes I have tried...

    For sure keep us updated. :)

    Yes I have tried LDN a couple times over the past yr and unfortunately it does not help me that much (side effects made me stop after 6 wks - I think was my longest...
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    Hi Angela - I am so pleased you have found...

    Hi Angela -

    I am so pleased you have found something to help you. I hope you just get better and better results w/ the LDN.
  23. The blood tests for Sjogren's are Anti-Ro and...

    The blood tests for Sjogren's are Anti-Ro and Anti-La but many Sjogren's patients are negative for these 2 tests
    Generally autoimmune markers like ANA and rheumatoid factor can be indicative.
    A...
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    I'll PM you some doctor info, just in case (no...

    I'll PM you some doctor info, just in case (no pressure of course). The derm I'm thinking of sees difficult cases and might able to give you some guidance about medications and treatment ideas going...
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    I sympathize....

    I sympathize.... <3
    My lasers definitely caused blood vessel growth for me. That only laser will be able to get rid of, lol.
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