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

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  • findingaway
    replied
    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?

    Leave a comment:


  • Rand627
    replied
    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.

    Leave a comment:


  • findingaway
    replied
    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?

    Leave a comment:


  • Rand627
    replied
    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.

    Leave a comment:


  • findingaway
    replied
    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.
    Hmm, &%*@$ rosacea!!! Just went to the pub with a friend and confronted him on something he said yesterday. I flushed and although the full facial flush went down within seconds, my cheek is really red and burning. So &%*@$.

    I don't know if this is the RLT making me more sensitive or not. What I mean is that there is always red, but usually when I flush it goes down and back to base red, but my cheek has stayed quite red.

    Now...because the inflammation has been down the last few days, I cannot tell if it is what it was like before the RLT or worse...

    Anyway, great news on the trip to Disneyland and not getting burnt. I'd love to go one day!

    What is quinacrine?

    I heard you need to get your levels to the upper range (50 ng/ml+) all year down according to the vitamin d council...

    Leave a comment:


  • Rand627
    replied
    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.

    Leave a comment:


  • findingaway
    replied
    Originally posted by Rand627 View Post
    Should I just use RLT for a month and then add the D3? I don't know if I'd be able to separate the benefits/downfalls of either regimen if I added them at the same time.
    Rand,

    I would stick to one or the other. Otherwise as you say you won't know what is causing what.

    Whichever you decide to start first, make sure your stable before trying the other.*

    I know it's more money, but I'd strongly recommend getting a vitamin d test before you start supplementing so you know where you are. You can get one though the vitamin d councils site (http://www.zrtlab.com/vitamindcouncil) for $65 or go to your doctor and tell him you want to be tested as your supplementing.

    Take along research:
    http://www.ncbi.nlm.nih.gov/pubmed/18573153

    http://www.rosaceagroup.org/The_Rosa...n-inflammation

    And anecdotal reports:
    http://www.rosaceagroup.org/The_Rosa...els+checked%3F

    Good luck!

    Leave a comment:


  • mrsmoof
    replied
    Originally posted by Rand627 View Post
    Thanks again for keeping us updated. My RLT unit is coming in the mail in..2 days or so.

    I have a number of D3 supplements already and I am thinking of throwing caution to the wind and adding both D3 and RLT treatments at the same time. Kind of a go for broke type of thing.

    So my rosacea regimen would be Quinacrine, RLT and D3 supplements. Any thoughts? Should I just use RLT for a month and then add the D3? I don't know if I'd be able to separate the benefits/downfalls of either regimen if I added them at the same time.
    Rand,

    Is the Mepacrine still helping? Are you still improving?

    Leave a comment:


  • Rand627
    replied
    Thanks again for keeping us updated. My RLT unit is coming in the mail in..2 days or so.

    I have a number of D3 supplements already and I am thinking of throwing caution to the wind and adding both D3 and RLT treatments at the same time. Kind of a go for broke type of thing.

    So my rosacea regimen would be Quinacrine, RLT and D3 supplements. Any thoughts? Should I just use RLT for a month and then add the D3? I don't know if I'd be able to separate the benefits/downfalls of either regimen if I added them at the same time.

    Leave a comment:


  • findingaway
    replied
    RLT update

    Day 9
    Well, Day 8 went without much incident, so I decided to up the RLT duration to 10 minutes on each cheek, all red, 1/2 from my face.

    I looked in the mirror after and was quite dismayed to see my cheeks were very red. I then immediately went to bed - this was about 11:30.

    Woke up at 3am to go to the loo. Noticed both my cheeks were burning quite a bit. Normally only the right one does. Although both my cheeks were much calmer and less red when I looked in the mirror.

    I get this kind of cold burning sometimes. I can only think to describe it like that. Like if someone was to place a really cold bit of metal on your cheek. Don't know if anyone else gets this. Anyway, that sensation was quite intense last night and still remains somewhat in my right cheek.

    This morning my face is definitely less red (baseline redness less) and i was told i look rested and fresh, which is ironic as I was awake from 3am til 4:30am with the burning keeping me up.*

    Face also feels less reactive in some way? More stable.*

    I googled about the burning and could only find this:*http://www.docshop.com/education/der...ynamic-therapy

    Short-term risks include redness, swelling, stinging, and burning following treatment. Although rare, some patients may experience an allergic reaction to the LevulanĀ® solution.

    Something else I found was in relation to the topical solution which comes with the product that interestingly makes the skin more photosensitive (thought that was a bad thing!). It said that burning, itching during or just after treatment is usually considered a good thing. Maybe my body is just healing.

    Eyes a little better too. No change to Seborrheic Dermatitis. I'll leave it til Day 12 now.

    Leave a comment:


  • findingaway
    replied
    Originally posted by Rand627 View Post
    Hm. Well thanks for sharing that, makes me less worried I suppose. I'm probably going to end up using protection anyway. I have a pair of goggles that I use for high end red laser pointers. They block 660nm very well..although they won't do anything for infrared.

    How has your high dose of Vitamin D been working out for you? I started taking it at one point but I could have sworn that it made my flushing worse.
    Hi,

    I don't blame you for being careful with your eyes - I am very and if I lose any sight, believe me, I will sue them to every penny

    Yes, many, many people find that when upping their dose of vitamin d their flushing increases. You must go slowly. Up it by no more then 2000IU in each step - about a week apart.

    It has done wonders for my flushing and general health. I used to suffer from brain fog - at one point someone actually thought I had adult ADD - lol. Now, I am pleased to say my concentration has improved massively (I wasn't expecting this) and I just feel better all round.

    Just ordered a test through the vitamin d councils site, so will check my levels again now to make sure they are good.

    You might be interested in this thread: http://www.rosaceagroup.org/The_Rosa...+level+checked
    Last edited by findingaway; 10 January 2011, 08:50 PM.

    Leave a comment:


  • Rand627
    replied
    Hm. Well thanks for sharing that, makes me less worried I suppose. I'm probably going to end up using protection anyway. I have a pair of goggles that I use for high end red laser pointers. They block 660nm very well..although they won't do anything for infrared.

    How has your high dose of Vitamin D been working out for you? I started taking it at one point but I could have sworn that it made my flushing worse.

    Leave a comment:


  • findingaway
    replied
    Originally posted by Rand627 View Post
    So even with the infared on the omnilux they still say it's completely safe? Interesting!
    Yep. Even infrared. I found a graph a while ago which I posted up about the risk of eye damage (before I even read it in the Omnilux docs) that showed the risk decreasing as you move from UV to Infrared which would indicate that there is less risk with infrared then red. I say risk - it must be pretty much non-existent or them to be able to state it's safe.

    I think the reason some people were cautious is there is info on the web that says contrary - isn't there always Something to do with the fact that as your eye cannot see infrared, you don't blink/squint if it's too brought and infrared gives off heat. Both statements are true - in fact all heat comes in the form of infrared. Which means even people are giving off infrared

    Leave a comment:


  • Rand627
    replied
    Originally posted by moore778899 View Post
    Hi Rand,

    I have heard that when using infrared you should wear eye protection. But the Omnilux is FDA approved and says in the documents that it is completely safe and will not damage eyes - no eye protection needed.

    Saying that, the Red does tend to temporary blind me for a few minutes!

    So even with the infared on the omnilux they still say it's completely safe? Interesting!

    Leave a comment:


  • findingaway
    replied
    Initial Survey Results

    I am currently pulling the survey results into a graphs (using numbers on the mac and although I love Apple, I am rapidly losing love for them right now...It's not as versatile as excel)

    It's too early to give any really meaningful data, but from the 3 that have taken the survey, there are some promising results.

    3 is disappointingly low number, but the survey only started working a few days ago and some people have still reported problems. That's what you get for using a free service!

    In a nutshell:
    • Symptoms before ranged from none to moderate to severe for facial redness, burning, flushing, bumps etc
    • All the people had been using RLT for at least 8 weeks (most over 12 weeks)
    • Most were using it every day. 10-15 mins, 30 minutes and 2-3 times a week respectively
    • Most people used it 3-5 inches from their face
    • All used only red, no infrared
    • No side effects were reported


    Most people said their:
    • Facial redness has improved a little
    • Flushing/blushing has improved a little (duration/intensity)
    • Visible blood vessels have improved a little

    • Burning has improved a lot
    • Itching has improved a lot
    • Bumps and/or pustules as improved a lot
    • Resilience to triggers has improved a lot
    • Ocular Rosacea improved a lot


    Some results were split 50/50:
    • Rough skin texture (hugely improved & improved a little)*
    • Skin thickening (improved a lot & improved a little)*


    *Bear in mind that some results show as *Never had and have been therefore excluded.


    Also worth noting:
    • No one had seborrheic dermatitis, so no word on this yet.
    • No one said their symptoms had gotten worse
    • One result for bumps and/or pustules said not improved at all
    • Some respondents said that RLT had hugely improved their symptoms (itching, rough skin texture and rellience to triggers)
    Last edited by findingaway; 9 January 2011, 06:54 PM.

    Leave a comment:

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