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  • My flushing is almost cured-Mepacrine

    Hey everyone I realize I have one post but this is not spam,you may have seen me on the acne.org forum

    I am good freinds with lamarr

    I dont wanna right alot as I am about to go to bed but everyday my flushing is getting better and better

    I had severe flushing to where my hands almost turned purple/heart like crazy

    My current derm wanted to send me to the best derms in canada at the top university because they could not understand why my tests kept coming back negative when clearly something was wrong

    accutane has really ruined my life as I had no flushing before it and no redness

    it gave me

    Severe flushing (usually all throughout the day non stop)
    perm redness from the flushing/rosacea
    joint pain
    hand are messed up..used to go very dark red/purple kinda
    seb derm on top of that
    ocular rosacea
    among other things

    Lamarr has helped me along the way when I was at my worst,he would talk to me on msn and my flushing would get so bad my heart went crazy and felt so overwhelmed with heat I usually walked outside to cope with it until i get to bed

    I take a drug calling mepacrine (quinacrine) and yes I am in canada and you can't get it here but I get a compound made quinacrine (quinacrine is compounded/made in over 2000 pharmacies in america)

    I took rameron for months and months before quinacrine and maybe a 10%-15% less flush i got which was hardly noticeable

    Quinacrine is slowly giving me my life back,I was really discouraged when i started because it seemed to kick in for me in twice the amount of time it did for lamarr but it is slowly giving me my life back each week

    I have been on it for a month

    I still flush after sex but I am pretty sure thats gonna get better in time and lamarr told me it will clear the perm redness in time too

    I recently got a yellow/red/infra red LED light therapy too from the ledman but I stopped using it when i started quinacrine because the LED can make you flush when you first adjust to it

    Anyways just my story..a little bit of hope




    Another point is,it was very hard for me to get a prescription,but I was so severe that my doctor thought its worth a shot

  • #2
    Hi Halfpipe

    That's great that Mepacrine is helpingyou so dramatically and thanks for sharing your success story with us.

    I know Lamarr has written about his success with Mepacrine as well and it is very hopeful that it has also helped shut down your flushing. I hope that this drug becomes easier to obtain so more people can try it.


    Will you be continuing to take Mepacrine on a long term basis?

    Best wishes for continued success and thanks again for posting.

    Melissa

    Comment


    • #3
      Originally posted by Melissa W View Post
      Hi Halfpipe

      That's great that Mepacrine is helpingyou so dramatically and thanks for sharing your success story with us.

      I know Lamarr has written about his success with Mepacrine as well and it is very hopeful that it has also helped shut down your flushing. I hope that this drug becomes easier to obtain so more people can try it.


      Will you be continuing to take Mepacrine on a long term basis?

      Best wishes for continued success and thanks again for posting.

      Melissa
      Hi melissa

      About using mepacrine for a long time,I would not rule it out,I am seeing a allergist soon so if a miracle happens (she finds something and can fix my problems) then I clearly wont need mepacrine

      but alot of flushing sufferers I talked too said dont waste your time..while a couple said its worth a shot

      and its not really hard to obtain

      I see your from america,your local pharmacy could compound it very easily.

      its compounded in 2,000 pharmacies in america (due to it being the best,and there being a demand for it),I read a article about it.
      Last edited by Halfpipe101; 31 May 2009, 11:50 AM.

      Comment


      • #4
        Hi Halfpipe,

        Not sure what you mean about some people saying not to waste your time. Is that regarding the use of Mepacrine? Sorry, I am probably just being daft but if you could explain a bit.

        Thanks
        Melissa

        Comment


        • #5
          No not about the mepacrine lol

          Alot of people say don't waste your time getting allergy tests while others said its worth a go.

          And I edited my 2nd post speaking on ways of getting mepacrine in America/Canada.

          Comment


          • #6
            Thanks much Halfpipe.
            That is very encouraging.
            I would love to try this drug but not sure my derm would go for it.
            If you did have any links to the articles you are talking about that would be useful.

            As far as allergy testing I think it would be a good idea just to rule anything out. There is no harm in getting these tests done IMO and just more thorough a way to go.

            Good luck!

            Melissa

            Comment


            • #7
              http://books.google.co.uk/books?id=d...m=10&ct=result

              specifically Page 18 further explains about the eye's

              It shows/says that for one the drug quinacrine does not affect the eyes

              its a common knowledge in rehmatologists lamarr said

              I actually emailed my doctor this link,I kind of taught my doctor about flushing lol

              Comment


              • #8
                Thanks halfpipe.
                I will give it a read.
                Much appreciated!

                Melissa

                Comment


                • #9
                  Where is the section in this that specifically talks about it being used to stop flushing?
                  Dx 1998

                  Comment


                  • #10
                    hey friend, I am in Canada too! I suffer terribly from rosacea and my flushing also became worse after Accutane.

                    How exactly did you get this medication and who is your doctor/derm? I searched a lot on this back when Lamarr posted and everywhere listed that is was "Not commercially available in the U.S. and Canada."

                    Feel free to please PM me

                    Thanks a lot and congrats on your success.
                    Last edited by RedFaced; 31 May 2009, 09:55 PM.

                    Comment


                    • #11
                      Hmm that is interesting about getting it compounded! I wonder if my GP would go for it--she lets me try just about anything, but I am sure there must be a limit LOL.

                      I am going to contact a compounding chemist over here (Australia) to see if we can get our hands on it!

                      Comment


                      • #12
                        My doctor and me have a good relationship family freinds.

                        I would email the the link i posted and sources of why it stops flushing and how theres no eye side effects

                        I emailed him,but thats only because he thought it had eye side effects

                        Your doctor might just give it to you without the trouble I went through

                        So bascially I asked for it and got it after a couple tries..but I was at my worst..I was a red mess going in there

                        And he could tell I was really depressed

                        I said something along these lines

                        "this could really give me a much better value of life"

                        and so far it is

                        and he called the pharamacy to refill it so that must mean hes okay with it now after research

                        My derm didn't give it to me though because he said it wasnt made commercially in canada so he tried to put me on steriod cream..he was the most useless man i think ive ever met

                        I would try with your family doctor
                        Last edited by Halfpipe101; 1 June 2009, 06:19 AM.

                        Comment


                        • #13
                          Nah, my GP would not give it to me - he does not prescribe any medications that are above and beyond general use. He refers people to Specialists, who specialize in treating certain conditions, ie. Derms etc.

                          I'm still not clear on *how* your doctor is able to obtain it if it is not approved for use in either Canada or the U.S.A.?

                          As in, if I see a derm and mention that I have read several reports of patients with severe Rosacea using Mepracrine and that it has helped many of them, the likely response would be, "Never heard of that being used for Rosacea and it is not available in Canada". So what would be the best response to that? You can have it compounded at a local Pharmacy?

                          How does the Pharmacy compound it? You still get it in pill form? How did they know about doses and all that?

                          Sorry for all the questions mate, but I am not clear on this process, how you can get a drug that is not commercially available in your country?

                          Hoping you can go into a little more detail and perhaps look at your prescription for dose info and other info etc.

                          Thanks again for your help, I really want to try this stuff because I am suffering as well from Rosacea that causes swelling in areas of my face as well as a lot of physical pain. Feel free to PM me if you want to keep some info private or between us.

                          I am in the Toronto area if that helps things at all...
                          Last edited by RedFaced; 1 June 2009, 11:18 PM.

                          Comment


                          • #14
                            Originally posted by RedFaced View Post
                            Nah, my GP would not give it to me - he does not prescribe any medications that are above and beyond general use. He refers people to Specialists, who specialize in treating certain conditions, ie. Derms etc.

                            I'm still not clear on *how* your doctor is able to obtain it if it is not approved for use in either Canada or the U.S.A.?

                            As in, if I see a derm and mention that I have read several reports of patients with severe Rosacea using Mepracrine and that it has helped many of them, the likely response would be, "Never heard of that being used for Rosacea and it is not available in Canada". So what would be the best response to that? You can have it compounded at a local Pharmacy?

                            How does the Pharmacy compound it? You still get it in pill form? How did they know about doses and all that?

                            Sorry for all the questions mate, but I am not clear on this process, how you can get a drug that is not commercially available in your country?

                            Hoping you can go into a little more detail and perhaps look at your prescription for dose info and other info etc.

                            Thanks again for your help, I really want to try this stuff because I am suffering as well from Rosacea that causes swelling in areas of my face as well as a lot of physical pain. Feel free to PM me if you want to keep some info private or between us.

                            I am in the Toronto area if that helps things at all...

                            What do you mean how does my doctor get it if its a compound

                            lots of drugs are made from compound and lots of lupus patients use quinacrinne compound in canada and america

                            and yeah my doctor said the same thing but I told him my cousin went to the best derm in england and he prescribes this for this among other skin conditions (such as dry skin)

                            the cousin thing was a lie but i didnt feel like telling him a message board member told me about it lol

                            Your local safeway can do it easily,in pill form

                            I take 100mg which is not a high dose but its what lamarr takes and it controls his flushed at that dose

                            I actually didn't know they could compound it but my pharmacist was like "Quinacrine,yeah we can compound that,we have done it many times before"

                            Comment


                            • #15
                              Originally posted by Halfpipe101 View Post
                              What do you mean how does my doctor get it if its a compound

                              lots of drugs are made from compound and lots of lupus patients use quinacrinne compound in canada and america

                              and yeah my doctor said the same thing but I told him my cousin went to the best derm in england and he prescribes this for this among other skin conditions (such as dry skin)

                              the cousin thing was a lie but i didnt feel like telling him a message board member told me about it lol

                              Your local safeway can do it easily,in pill form

                              I take 100mg which is not a high dose but its what lamarr takes and it controls his flushed at that dose

                              I actually didn't know they could compound it but my pharmacist was like "Quinacrine,yeah we can compound that,we have done it many times before"
                              Ok, thanks for the info. I am seeing a Rosacea specialist in Toronto in the summer, so I may ask him when I see him, or maybe he has other suggestions. I would try almost anything at this point for relief form pain and swelling etc.

                              Where abouts in Canada are you? Out of curiosity...

                              Comment

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