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SURVEY | Effectiveness of light therapy for rosacea and/or seborrheic dermatitis

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  • #61
    Originally posted by Rand627 View Post
    Quinacrine is mepacrine..which is also atabrine. Just 3 different names for the same stuff. Most people here refer to it as mepacrine. It's the anti milarial that is so similar to plaquenil.
    And have you noticed any effects of it? Positive or negative?

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    • #62
      Yeah, it's certainly helped.

      http://www.rosaceagroup.org/The_Rosa...-try-Mepacrine!

      That's my log that I've been keeping. It's hit a massive plateau recently and hasn't improved over the last few weeks.

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      • #63
        Originally posted by Rand627 View Post
        Yeah, it's certainly helped.

        http://www.rosaceagroup.org/The_Rosa...-try-Mepacrine!

        That's my log that I've been keeping. It's hit a massive plateau recently and hasn't improved over the last few weeks.
        So where were you before the mepacrine and where are you now?

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        • #64
          Before the quinacrine I had just gone through a ton of treatments to try and help. Finacea, IPL, elidel, metrogel..etc. They all made it quite a bit worse. It was to the point where if I wasn't in front of a fan I couldn't watch TV or do anything on the computer. The only time I ever didn't use a fan was during dinner and it always made me flush. Also, I usually go to 3 hours of church. I never made it past the first 10 minutes without flushing. It's kept relatively cool but it's lit by florescent.

          Now I can go all 3 hours and start to feel a flush at the end. The last hour is in a relatively small room with quite a number of people in it. The lights are only 5 or 6 feet above my head. So I'm in a stale room with tons of florescent bulbs and it gets humid and hot thanks to the other people. That particular situation strains my skin but it usually holds. I can also watch TV and do computer stuff without too much difficulty. Can't wear headphones though, makes my ears way too hot.

          So yeah, it's helped. Quite dramatically in fact.

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          • #65
            Originally posted by Rand627 View Post
            Before the quinacrine I had just gone through a ton of treatments to try and help. Finacea, IPL, elidel, metrogel..etc. They all made it quite a bit worse. It was to the point where if I wasn't in front of a fan I couldn't watch TV or do anything on the computer. The only time I ever didn't use a fan was during dinner and it always made me flush. Also, I usually go to 3 hours of church. I never made it past the first 10 minutes without flushing. It's kept relatively cool but it's lit by florescent.

            Now I can go all 3 hours and start to feel a flush at the end. The last hour is in a relatively small room with quite a number of people in it. The lights are only 5 or 6 feet above my head. So I'm in a stale room with tons of florescent bulbs and it gets humid and hot thanks to the other people. That particular situation strains my skin but it usually holds. I can also watch TV and do computer stuff without too much difficulty. Can't wear headphones though, makes my ears way too hot.

            So yeah, it's helped. Quite dramatically in fact.
            That must have been very hard to cope with! Thank goodness it helped!

            I was getting to the point where I was flushing here, there and everywhere. Wind, sun, embarrassment, hot food, bending my head down... Since taking the vitamin d though, things started to subside. The redness didn't, but the flushing did. The zinc knocked out the burning, although this is now a daily occurance again since starting RLT. I am hoping that once my skin gets used to the treatment, the burning will go again and the redness will start to fade.

            Interestingly, I happened across this link: http://www.ehow.com/i/#article_5410383 which talks about Green Light helping to get rid of facial redness. Green Light is the same power (aroundabout) as Red Light (yellow for example is a very weak band of light, so would take AGES to see any noticeable difference).

            Might give that a go if the redness doesn't go with Red Light. But what Red Light definitely seems to do for many is reduce the flushing and many other beneficial effects.

            Incidentally, my face has returned to how it was this morning, which is a positive sign at least!

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            • #66
              Meh, dunno if your experience makes me want to use RLT anymore! Hah. It's only been a week though, so it's hard to tell. Anyway, my unit is supposed to come in the mail today. Gonna give both my ears 2 minutes, both cheeks 2 minutes and my nose 2 minutes as well.

              If all goes well I'll do three the next day..or the day after, depending on how it goes.

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              • #67
                Originally posted by Rand627 View Post
                Meh, dunno if your experience makes me want to use RLT anymore! Hah. It's only been a week though, so it's hard to tell. Anyway, my unit is supposed to come in the mail today. Gonna give both my ears 2 minutes, both cheeks 2 minutes and my nose 2 minutes as well.

                If all goes well I'll do three the next day..or the day after, depending on how it goes.
                Sorry Rand...just saying it like it is.

                Although I've been more 'flushy', I am definitely less red as in permanent redness then before I started. And the 'flushy' side effects aren't that terrible, just a little disconcerting...

                Good luck! I'm sure it'll be a wise investment.

                PS - was taking very high dose fish oils and I halfed the dose at the same time, so might also have something to do with it?!

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                • #68
                  Originally posted by moore778899 View Post
                  Sorry Rand...just saying it like it is.

                  Although I've been more 'flushy', I am definitely less red as in permanent redness then before I started. And the 'flushy' side effects aren't that terrible, just a little disconcerting...

                  Good luck! I'm sure it'll be a wise investment.

                  PS - was taking very high dose fish oils and I halfed the dose at the same time, so might also have something to do with it?!
                  Hah, I'm glad you're giving me the truth. Would rather have you be honest about it. I did 2 minutes on my chin, both cheeks, both ears and my nose. Couldn't tell that I had done anything in the mirror. So, I guess that's good? Haha, who knows I guess. I wonder if I should start up another thread about it.

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                  • #69
                    Originally posted by Rand627 View Post
                    When I went to my rheum she tested my D levels along with a bunch of other things. D was the only one I was low on. I believe I was around a 28 when the normal range is somewhere above 30. I know that I was low but I was relatively close to normal.

                    And yeah, I agree with you. Just going to start with the RLT for a month or so and see what it's doing. I'll make the call then on whether or not I should start.

                    I went to Disneyland yesterday and had an awesome time. I didn't put any type of sunscreen on to see how my skin handled it. The quinacrine I'm on is supposed to help with sun sensitivity. Anyway, it's the morning after and I'm not burned at all. It usually takes my skin about a day to deal with the sun and you can tell what's happened the day after. I'll have a better idea of whether or not I tanned or nothing happened at all tomorrow morning. That was the most sun I've had in years.
                    HI RAnd..

                    so it seems the mepacrine is helping? if its like plaquenil it can take 3-6 months before seeing great benefits.
                    Doug

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                    • #70
                      Originally posted by Rand627 View Post
                      Hah, I'm glad you're giving me the truth. Would rather have you be honest about it. I did 2 minutes on my chin, both cheeks, both ears and my nose. Couldn't tell that I had done anything in the mirror. So, I guess that's good? Haha, who knows I guess. I wonder if I should start up another thread about it.
                      Hi Rand,

                      How close did you have it to your face? 2 mins prob won't do much, but good to build up.

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                      • #71
                        Touching it, basically. And yeah, I'm a bit nervous about the whole thing and don't want to shock my skin. Gonna take my time!

                        And yeah, the mepacrine has helped. Without a doubt. I just hope it continues to help.

                        Comment


                        • #72
                          Update - Day 12

                          Day 12
                          OK, an update. Day 12 was yesterday - the day of the treatment.

                          It's been a bit up and down the last few days - burning, sometimes I look less red, others more.

                          Decided to do the opposite of what others might do and after 3 days of no RLT, increase my exposure time to 14 mins, 1/2 inch from the face, all red. Both cheeks, eyes, forehead and 5 mins on the nose.

                          I should mention that even before RLT I have been getting more and more little red spots (slightly and I mean slightly raised) on my cheek. These continued to come and the new ones have been more prominent.

                          However, inspired by a post I'd read about it getting worse before it gets better, I am going to crack on. It's not so much worse as different...more mottled with prominent red dots, but the diffuse redness seems less.

                          Well although I had the unit on for longer, my cheeks were less red then they were the first few treatments. Still flushed, but not as bad. The burning has subsided somewhat - quite a bit actually. But we're still (24 hours later) a-roundabout where I was before this last session.

                          My eyes seem to go through phases of being really good and then really watery and bit stinging. My eyes were fairly constant dry before.

                          So too early to give any reports either way yet. Fingers crossed it'll turn out all good. No more treatments until Tuesday now, where I will do 17 mins.

                          Oh and I got two more surveys in. One was very similar to the others. Very positive. The other said their symptoms got worse for every aspect of their rosacea. Having said that, they were using RLT everyday 1-3 inches for 20-30 mins, so maybe not giving the body enough time to work it's magic I suspect.

                          Rand, how you getting on?
                          findingaway
                          Senior Member
                          Last edited by findingaway; 14 January 2011, 04:04 PM.

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                          • #73
                            Just got back from the gym and am going to do 3 minutes today. I know I'm taking it slow, but gosh dang I just don't want to ruin my skin. How'd your 14 minutes go?

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                            • #74
                              Originally posted by Rand627 View Post
                              Just got back from the gym and am going to do 3 minutes today. I know I'm taking it slow, but gosh dang I just don't want to ruin my skin. How'd your 14 minutes go?
                              Hi Rand,

                              I don't think there is much chance of ruining your skin so I wouldn't worry! RLT does not damage the skin, it is not powerful enough to do that. Probably the equivalent of trying to dent a car with a feather

                              However, it could make you flare a little more then usual or a little redder - all be it temporally. One report did come back to say it had made their symptoms worse, but this seems very rare and in most cases where people don't see success with RLT (which is not many according the survey at least) is that it just made no difference. With regards to the person who said they had a negative experience, I wonder if it could be that as the RLT didn't have any impact for them and the rosacea simply got worse over time?

                              Anyway, having said all that. Very wise to take it slowly so your skin can get used to it!

                              Incidentally, another survey in. 5 very positive. 1 negative.

                              PS - Nothing more to update really. Same as yesterday. Haven't flushed in a while though!
                              findingaway
                              Senior Member
                              Last edited by findingaway; 14 January 2011, 08:02 PM.

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                              • #75
                                Hmm, my cheek is definitely redder then it has been in previous weeks/months :/

                                I still hold out hope though!! Maybe making my cheeks red with the light is not a good way to go. Maybe I should increase the distance? I am hesitant too, because the scientist said it wouldn't really do anything more then 1/2 away from my face...

                                Re treatment everyday vs breaks of a few days, found this on a forum which I thought was interesting:

                                I don't think we should follow the manufacturer's instructions all the time. When I got my rosacea light, I did it every night. In the beginning it worked wonders, but then suddenly I got papules everyday. In their email to me, they said I should increase the treatment time to 10 minutes per area if it did not improve. That was what I did, but papules keep coming. Then one night I had to take a friend to emergency and we waited for a long time. By the time I got home, I did not have the energy to do the light. The next morning I found my skin getting better! Imagine my surprise! Anyway then I realized that I should not be do it every night. I cut down the frequency to 4 times a week, and my skin is improving (rosacea light for cheeks, and AA for other areas.)

                                HTH


                                http://www.essentialdayspa.com/forum...7027&start=575

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