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Thread: My flushing is almost cured-Mepacrine

  1. #71
    Moderator phlika29's Avatar
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    Quote Originally Posted by EK1 View Post

    So basically, Dr. Chu also prescribes this? I may be going to London in October, so maybe it is worth it to see him to get it if i cannot get it from a doctor here in Canada.
    Dr Chu is already booked up to November according to the receptionist. I wanted to change my appointment and this was the earliest they could offer me.

    With regards the mepacrine I found it very helpful for my flushing.

  2. #72
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    Maybe they could make an exception, you never know. I'm from Canada so who knows. Anyways, are you still on the mepacrine? Did it stop flushing completely? I'd love to know more about people's experiences with it, like if they are still on it, or if it shut it down and then you only have to go back on it when the flushing comes back. THe more info i know the better chance i have of getting it from my doc.

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    Hey Sara......saw your post on upping your vitd3 to 2000iu's.....congrats on it going so good for you......would like to ask you a favor....next time you see Dr.Chu....could you ask him if he has any papers on using mepacrine for flushing or rosacea patients. If we could get ahold of something it may be possible for more of us to give this a try....I am seeing my new derm tomorrow and will bring it up but I seriously doubt he will agree to it or ever heard of it for rosacea.....seems to be used for DLE (discoid lupus patients).....I wish Dr. Chu had some published papers on it's use for us....that would be awesome!

    Take care
    Darlene

    Oh....on a side note for the 1st time today I took 800iu's of vit d3....one 400iu at lunch the other at dinner.....so far so good.....I am hoping I can just slowly increase over time.
    Dx 1998

  4. #74
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    Quote Originally Posted by Lookout View Post
    Hey Sara......saw your post on upping your vitd3 to 2000iu's.....congrats on it going so good for you......would like to ask you a favor....next time you see Dr.Chu....could you ask him if he has any papers on using mepacrine for flushing or rosacea patients. If we could get ahold of something it may be possible for more of us to give this a try....I am seeing my new derm tomorrow and will bring it up but I seriously doubt he will agree to it or ever heard of it for rosacea.....seems to be used for DLE (discoid lupus patients).....I wish Dr. Chu had some published papers on it's use for us....that would be awesome!

    Take care
    Darlene

    Oh....on a side note for the 1st time today I took 800iu's of vit d3....one 400iu at lunch the other at dinner.....so far so good.....I am hoping I can just slowly increase over time.
    I might try to stop mepacrine for a week after another month or so and see if my flushing comes back like it used to be

  5. #75
    Moderator phlika29's Avatar
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    Quote Originally Posted by Lookout View Post
    Hey Sara......saw your post on upping your vitd3 to 2000iu's.....congrats on it going so good for you......would like to ask you a favor....next time you see Dr.Chu....could you ask him if he has any papers on using mepacrine for flushing or rosacea patients. If we could get ahold of something it may be possible for more of us to give this a try....I am seeing my new derm tomorrow and will bring it up but I seriously doubt he will agree to it or ever heard of it for rosacea.....seems to be used for DLE (discoid lupus patients).....I wish Dr. Chu had some published papers on it's use for us....that would be awesome!

    Take care
    Darlene

    Oh....on a side note for the 1st time today I took 800iu's of vit d3....one 400iu at lunch the other at dinner.....so far so good.....I am hoping I can just slowly increase over time.
    Yes I am happy to ask him. My worry is remembering terrible memory. I am also going to take a long a copy of the Q&A as I never heard back from him abot this (might be that tht email never got through).

    Good luck with the vitamin D

  6. #76
    Senior Member RedFaced's Avatar
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    ^bump for asking Dr Chu for some supporting literature on Mepacrine for flushing and Rosacea. It would be VERY helpful for a lot of us in North American that are interested in trying this medicaiton.

    If anyone can get something from him, it would be very much appreciated. Let us know how it all goes.

    Thanks!

  7. #77
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    Quote Originally Posted by RedFaced View Post
    ^bump for asking Dr Chu for some supporting literature on Mepacrine for flushing and Rosacea. It would be VERY helpful for a lot of us in North American that are interested in trying this medicaiton.

    If anyone can get something from him, it would be very much appreciated. Let us know how it all goes.

    Thanks!
    I have been getting king of a tan lately

    i work by the water so its hell for my flushing with the heat here in the summer,last summer it made me a red,flushing,burning mess

    I seem to handle the sun alot better these days and I am a actually getting a light tan,reminds me of before i had bad rosacea

    too bad the seb derm area is not tanning but im trying to clear it up with znp bar

  8. #78
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    Sara I am counting on you to get us something from Dr.Chu on using Mepacrine.....he may tell you that there is nothing documented....that's okay at least we would know there is nothing for sure then....or maybe he has something documenting his use with rosacea patients.

    I saw a new derm today (I hate derms) he was just as useless as every other derm I have ever saw in the last 12yrs......asked me if the redness bothered me much? I said yes it bothers me....so does the flushing and burning and reacting to everything on the planet and burst out crying! He prescribed a combo ontiment Ahnemycin ointemnt + dermatop cream to use.....this is a steroid....all together MORON.....I am not using that to treat the redness......he did give me samples of Finacea to try 1st then if that doesn't work try the steroids!

    I knew this jerk wasn't gonna have a clue about anti-malarias....but I braved it out anyway.....told him about others here using it successfully and Dr.Chu.....he said "oh, really? well bring something in supporting it's use and well see"

    So without something to convince a doctor or derm to prescribe it I seriously doubt I will ever get anyone to try it.

    I then asked to try Clonidine.....he still wouldn't even try that! Said we'll see in 3wks how your doing......is he really thinking that I am gonna be miraclously well in 3wks on Finacea or steroids? I got squat today.....the derm made another $120 off of me.
    Last edited by Lookout; 18th June 2009 at 12:11 AM.
    Dx 1998

  9. #79
    Senior Member RedFaced's Avatar
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    Sorry to hear that. I agree though - there must be something, somewhere otherwise how did Dr. Chu decide to start trying this? There must have been some literature somewhere that supports its effects on Rosacea, unless he is pioneer for this and Rosacea, in which case, even a general reference letter, a couple paragraphs written by him on his experiences with it as well as its effects on treating Rosacea - I think this would open the eyes of a lof derms over here across the pond.

    I would obviously NOT use the steroid cream as you stated, clearly will only make it worse from what I have read.

    Quote Originally Posted by Lookout View Post
    Sara I am counting on you to get us something from Dr.Chu on using Mepacrine.....he may tell you that there is nothing documented....that's okay at least we would know there is nothing for sure then....or maybe he has something documenting his use with rosacea patients.

    I saw a new derm today (I hate derms) he was just as useless as every other derm I have ever saw in the last 12yrs......asked me if the redness bothered me much? I said yes it bothers me....so does the flushing and burning and reacting to everything on the planet and burst out crying! He prescribed a combo ontiment Ahnemycin ointemnt + dermatop cream to use.....this is a steroid....all together MORON.....I am not using that to treat the redness......he did give me samples of Finacea to try 1st then if that doesn't work try the steroids!

    I knew this jerk wasn't gonna have a clue about anti-malarias....but I braved it out anyway.....told him about others here using it successfully and Dr.Chu.....he said "oh, really? well bring something in supporting it's use and well see"

    So without something to convince a doctor or derm to prescribe it I seriously doubt I will ever get anyone to try it.

    I then asked to try Clonidine.....he still wouldn't even try that! Said we'll see in 3wks how your doing......is he really thinking that I am gonna be miraclously well in 3wks on Finacea or steroids? I got squat today.....the derm made another $120 off of me.

  10. #80
    Moderator Melissa W's Avatar
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    Darlene,
    I'm sorry about your dreadful derm visit. That's very disappointing I know.

    A few months ago when I last saw my derm I asked him about Rifaximin and Mepacrine. He said he would research it and next time I see him he would let me know what he thought. He did email me about this about a month or so ago telling me he was still researching this issue.

    I am not sure when I am going to go again but I promise when I do I will report back either way. I have a feeling he will not be pro Mepacrine because he doesn't like treatments that may cause other issues or where the treatment is potentially more dangerous than the disease (like the cpn protocol which I discussed with him last year). However, he is a bright guy and if he feels there may be merit in this treatment for me he will certainly discuss it with me. He did say last year that if my rosacea becomes worse he would consider the cpn protocol as a potential treatment so he is open minded that way. I will report back once I know anything.

    Hang in there Darlene.

    Melissa

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