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Thread: My flushing is almost cured-Mepacrine

  1. #271
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    did anyone ever locate any studies for us to take to a doctor? I know Lamarr was going to post some.....did he ever do that?

    Thanks
    Dx 1998

  2. #272
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    witsend did you have worsening from the start? Also do you have p&ps too?

    It's hard not to be angry or upset when you guys are having less flushing and im still in this state of worse flushing than before the mepacrine. You know how it is, you just want it to work so bad you feel kinda hopeless. Sometimes i just want to break down and cry because it's such a weight on my shoulders, all this waiting.

  3. #273
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    Hi EK1,
    I havent had P+P for ages untill 3 weeks in on the Mepacrine. My flushing was also up and down.
    Please dont be so hard on yourself. It will work for you just give it time. That fact things are getting worse proves the drug is doing something. Like i said i came across loads of info on the net regarding Mepacrine and no where said 4 weeks, 5 weeks etc for things to improve. It happened for Lamarr and Halfpipe but dont go by that for your own situation.
    Easy said than done i know, but keep positive. Give the drug a good chance. Like your doctor said it sometimes takes longer in others to put right what was wrong.
    Please dont think i have had an easy ride with Mepacrine, the flushing has reduced but im still way off, as i have other skin complaints aswell.

    Keep your chin up and im sure in 4 weeks time you will have good news to report.

    Take care

  4. #274
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    Thanks so much for your kind words witsend. I tried to look up some info on mepacrine/quinacrine online about how long it takes to work, but for some reason i only found info on plaquenil taking 4 - 8 weeks, nothing on mepacrine.

    Interesting that you had more p&ps.... Knock on wood, but i have a feeling that it's helping my p&ps. I've had many free or almost free (like 2 new ones only) p&p days, which is something that i would never have. I think i only woke up with one tiny one. And the big ones i got last week were pretty much gone the next day! This is the smoothest i've ever been in my LIFE! haha.

    I will give it time. I'm at 5 weeks this saturday, and i will be just at almost 8 weeks when i see the derm again. I'm hoping that in this 5 - 8 week time period i will be able to report improvement. It's difficult because us rosaceans try so many things, get our hopes up and then it doesnt work. It's very hard on us. I think i'm more stressed also because i'm supposed to start school in a month, and if this doesnt start working by then i'm going to have delay school a year After all that hard work getting in! It would just be too hard to be in school 5 days a week full day when i have out of control flushing that can be very burny. I wanted to get everything under control before i took a drastic environment change. So it's like i've been waiting on eggshells these past few weeks because i have to make a decision soon. Also i'm nervous on if they will allow me to delay a year and still be accepted. My derm said he would provide me a note on the pain to give to them if i choose. So you see my predicament!! haha.

    Yeah my family also seems to believe that the fact that it's doing something negative will mean that it will pass this stage and then go onto improvement, rather than noticing no effects at all. I think my body has always been difficult... for instance, when i had a bad UTI last year i took 2 different medications proven to work and i took them 3 times and they did nothing! Finally i think after about 6 weeks it went away. The doctors were puzzled on this.


    Ps. sorry for the novel! It's just a nice oulet to be able to share all my struggles with you guys since you understand like no one else can.

  5. #275
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    I can totally relate to your desperation.

    The Job i do would be a rosacean's nightmare. I work for the London Underground as an engineer and i am subjected to a hot,sweaty dirty enviroment every night.All those who have travelled by tube on the underground will tell you how hot it can be. In summer its hell.I have to stay in that enviroment for 4-5 hours 5 days a week. So like i say can understand your situation.

    With repects to your schooling dont put it off would be my advise. You need something else to concentrate on. You WILL get your condition under control so stick with your education.

    Point im trying to make really is if i can do it then anyone can. Its hard but stay focused and let the drug works its magic.

    All the best.

  6. #276
    Senior Member RedFaced's Avatar
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    We can all relate! My mind was also running a muck when I first started, worrying about the what if's and if it doesn't work.

    Although my flushing has only begun to see some improvement, I still flared the other day when I was under some personal stress for the afternoon which calmed down once I had the situation under control/resolved.

    I don't think Mepacrine is a magic bullet that will turn off rosacea overnight. Your stress and nervousness may be adding fuel to the fire and masking any benefits you could be seeing from the mediaction (just a thought). I can understand your desperation with school and everythings, but really try to push the pressure aside and tell yourself that whatever will be will be and if you dealy school for a year or 6 months, then it will not be the end of the world. I took 2 years off during College and still went back and obtained my diploma with ease, no problems whatsoever.

    Just thought I would add my 2 cents worth. As others have said, I am sure once you stop thinking about it and let the days pass with a little more ease, you will surely begin to notice improvements.

    Regarding the Mepacrine itself, I have read a lot and the literature all points out to onset of actions *may* be evident at 3 or 4 weeks and that it will take 8 weeks to feel the full benefits of the drug. There are people who took Accutane and were clear from week 3 on and others who did not clear until their finals days in their 5th, 6th, 7th month. Everyone will respond to meds differently do hang in there

  7. #277
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    Thanks for the kind words. With regards to school i finished my four years of university and that's when the rosacea went nuts (thankfully late that summer). So i stayed home from Sept 2007 - January 2008 (that's 5 months). I started working part time from january to june 2008. Then i went on vacation and started work part time in September 2008. I worked until my rosacea was getting nuts with the flushing in April 2009 (so i worked 8 months). And since then i've been at home all day, not working trying to get the rosacea flushing under control. It's been about 4 months now. So the plan was to go back to school (teacher's college) in Sept 2009 and start getting a fulltime job after that. But i cant at the moment. So i feel like i've wasted essentially two years now on rosacea. Which is why i think the pressure is building, because i want to be able to put a downpayment on a townhouse in the next 2 years. So my fear is being a big fat failure while i see others buying their first homes, getting good jobs and getting married. Unfortunately i dont have any of the money for that. It just makes you feel like a failure when you compare what other people have done in the two years you wasted cause of your rosacea. So i guess im saying i dont want to add another year to that (blowing off school in sept). But my mom says, if you dont go, you can always go next year. And that i have plenty of life ahead of me to get a good job and buy a house. She said other people go back to school in their 30s still. So luckily im not being forced into anything.

  8. #278
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    Just wanted to say i believe my results were so rapid due to all of the anti flushing meds i was using and light therapy. I am a big fan of light therapy and i believe as soon as the mepacrin began relieving the inflammation my vessels were able to heal rapidly because of all of the above mentioned reasons.

    I continued to have improved results for about 6-8 months so i imagine it could be even longer for people who aren't using light therapy.

    Btw i don't recommend you start using light therapy until you are sure what the mepacrin is doing for you. I was using the light therapy before i began the mepacrin...

    good luck to you all and stay strong. I had the worth flushing and swelling you can imagine and i got through it.

  9. #279
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    Hi Lamarr,

    That's great that you are doing so well!
    If you have time it would be helpful if you could answer this poll

    http://www.rosaceagroup.org/The_Rosa...ad.php?t=18402

    Thanks and best wishes for continued success!

    Melissa

  10. #280
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    lamarr.....any luck getting access to those studies for us that aren't so lucky with doctors thinking outside the box?? I was hoping before Sept to get ahold of something to argue my case for trying it.
    Dx 1998

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