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Thread: Why is the RLT Trial taking so long?

  1. #71
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    Hi Steve,

    No offence taken And thanks for the compliment on my weblink.
    Well, perhaps I didnít express myself good enough; I didnít mean in any way that there should be a limitation on an open discussion and sharing of opinions concerning any treatment modality. Including RLT. Of course everyone is free to share his or her opinions, experiences and concerns. But it seems to have become sort of a battle between proís and conís right now, and similar arguments are used in several threads. Thatís at least the impression I get, but I donít follow every single thread about it, so I might completely miss the nuances here.. As soon as something positive is mentioned, some people will follow with warnings and doom scenarioís, and vice versa. Thatís what is bothering me, not the fact that there are risks discussed here and possible side-effects etc.

    From what I read from Hozer2k he got increased redness from RLT. Great that he tried it and shared his experience. Too bad he seemed to get more redness. But a lot of people reported very good experiences and unfortunately it is still a matter of trial and error for each and every one. Like with every medication.

    best wishes, Natalja.

  2. #72
    Senior Member Steve95301's Avatar
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    Quote Originally Posted by GJ
    Quote Originally Posted by Steve95301
    I think that especially post-IPL, the risks are much greater than under normal conditions.
    Quite possibly so.

    Two highly thought of IPL practitioners have advocated the use of RLT post IPL:

    3.Hand held 660nm LED light 42-84 light array from Elixa.com.
    This can be carried in a purse, briefcase, backpack etc but requires
    an electrical outlet. Can be used 15 to 20 minutes twice a day and
    also 5 to 10 minutes during an acute flushing episode.
    And you know, this is frustrating for me. On the one hand I appreciate their input, but on the other hand, I need details. I want to know why they don't think the angiogenesis factor comes into play here.

    Of course, many things a doctor could try to explain to me would be over my head, so there's no point. But I don't think this is one of those cases; I think it should be possible to explain one's line of reasoning in this area without too much confusion.

    I'd just like to get details (and by details I mean high-level details, not nitty-gritty stuff, although that's welcome too). So while it adds to the puzzle, it's kind of a tease for me to read it, because I can't take it any further.
    KNOWLEDGE = POWER

  3. #73
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    Damnit... please disable anonymous posting ! I've seen trolls on various forums who were literally unstoppable, posting several times a day, every day, for years !

    RLT works for me, not 100%(I still look somewhat crap) but the cashier at my local supermarket is hitting on me... would not have happened a few months ago !

    As scientifical as it gets
    ------ Current routine ------
    cetaphil sensitive skin cleanser, linacare moisturizer, red light(660nm), 2 lemons, jojoba oil, IPL(10), AFT(9)

  4. #74
    Senior Member IowaDavid's Avatar
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    [quote="Steve95301"][quote="GJ"]
    Quote Originally Posted by Steve95301
    On the one hand I appreciate their input, but on the other hand, I need details. I want to know why they don't think the angiogenesis factor comes into play here.

    Of course, many things a doctor could try to explain to me would be over my head, so there's no point. But I don't think this is one of those cases; I think it should be possible to explain one's line of reasoning in this area without too much confusion.

    I'd just like to get details (and by details I mean high-level details, not nitty-gritty stuff, although that's welcome too). So while it adds to the puzzle, it's kind of a tease for me to read it, because I can't take it any further.
    Steve--we just don't have the data yet. Of course angiogenesis and increased bloodflow would be the last thing a rosacean wants to provoke in daily sessions. My guess--and I'm not a doctor, just an anecdotal witness--is that the anti-inflammatory action of RLT halts the inflammatory progression and may very well push it back, over time, to pre-rosacea or even a non-symptomatic condition.

    If you've got telangiectasias, you'll need to get thermal laser therapy. I know this disease affects everyone differently, but, I've spent literally hundreds of hours under my RLT array. I'm not a walking double-blind placebo study, but the tone of your posts reminds me of the Church persecuting Galileo. To our best knowledge, RLT is benign at worst, and very helpful at best. I understand you want hard studies and data, but we just don't have it yet. Not sure why you and clsykes are so worked up over this.

    If you don't want to try RLT, just forget it and do what works for you. This isn't a proving grounds for medical doctors; it's a forum for fellow sufferers to share experiences.
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  5. #75
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    Quote Originally Posted by IowaDavid
    Not sure why you and clsykes are so worked up over this.
    ID, not trying to be argumentative, but I feel this has been more than sufficiently explained. This kind of statement begs for repeating arguments, something that I do not necessarily care to do often.

    Best,
    Trey

  6. #76
    Senior Member IowaDavid's Avatar
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    Fair enough.

    We just don't see this sort of ongoing, endless debate in regards to, say, low-dose accutane. Can't say there have been many studies regarding that and rosacea, either. But, if people want to wait on studies, it's their choice--perfectly reasonable.
    35 year-old male
    Erythmatotelangiectatic rosacea & Ocular
    20 + laser treatments.
    Toleraine Soothing Light Facial Fluid for moisturizer. I don't use a special cleanser. Clonidine daily; klonopin sometimes.
    BEST and CURRENT TREATMENT I use: Low-Level Red Light Therapy LED array.
    Please feel free to PM me with your low-level red light therapy (LLRLT) questions. I'm happy to help if I can.

  7. #77
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    Quote Originally Posted by IowaDavid
    Fair enough.

    We just don't see this sort of ongoing, endless debate in regards to, say, low-dose accutane. Can't say there have been many studies regarding that and rosacea, either. But, if people want to wait on studies, it's their choice--perfectly reasonable.
    I would say to the contrary. Many studies about low dose accutane and rosacea have been conducted by well-known derms. These studies were not conducted in a formal trial that would require FDA approval, nor were they conducted with the rigor that a statistician would require. But, studies do exist, and again, a few of these studies have been performed by some of the most well known derms worldwide.

  8. #78
    Senior Member Twickle Purple's Avatar
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    Quite right, IowaDavid. The mechanism of action is unknown for both Metronidazole and Accutane with respect to Rosacea.

    Accutane:

    The exact mechanism of action is unknown


    Metronidazole:

    The mechanism of action of metronidazole in the treatment of rosacea is unclear.

    Same with Elidel and Protopic.

    We are prescribed alot of stuff that is not understood. Generally, recommendations for these medications are based on an observed improvement. Proper studies are sadly lacking.

    Happiness is a choice.

  9. #79
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    Quote Originally Posted by Twickle Purple
    Quite right, IowaDavid. The mechanism of action is unknown for both Metronidazole and Accutane with respect to Rosacea.

    Accutane:

    The exact mechanism of action is unknown


    Metronidazole:

    The mechanism of action of metronidazole in the treatment of rosacea is unclear.

    Same with Elidel and Protopic.

    We are prescribed alot of stuff that is not understood. Generally, recommendations for these medications are based on an observed improvement. Proper studies are sadly lacking.
    Well, first, I do not want to make this into an accutane vs. RLT discussion. From my vantage point, RLT is at its infancy, and I for one want to understand both the positives and negatives of the treatment.

    But, if you want to know the mechanisms by which accutane works for rosaceans, then here you go:

    Accutane's effect on the five subtypes of rosacea all are accomplished by different actions of accutane --which of course makes it confusing to everyone.

    1. With rhinophyma, a huge part of accutane's actions are shrinking sebaceous glands, removing long standing fluid via lymph system, downregulating fibroblasts which trigger skin thickening, etc.

    2. With Papulo-Pustular type, much of accutane's actions are related to

    a. A generalized anti-inflammatory action on inflammed dermal skin and inflammed blood vessels.

    b. More specifically, it helps normalize and release cell adhesion molecules from the inside of blood vessels. These are inflammatory flags that send out a signal to recruit neutrophils, the cell adhesion molecules then open up the blood vessel like a gate and let the neutrophils migrate up to the epidermis to cause papules. So, you remove CAM and you remove the gates -- the neutrophils dont go through.

    c. There is a massive build up of neutrophils outside the blood vessels at most stages of rosacea (note: article calling rosacea a neutrophillic dermatose), well, accutane tells the neutrophils to pull up camp and move along.

    In essence, rosacea sets up a perfect pro-inflammatory environment that makes it hard to break the cycle after years of this inflammation. Accutane, in essence, knocks down this inflammatory environment to
    pre-rosacea levels (in general) and gives many a fresh start. You still have the genetic predisposition, but you have undone the years of damage and now can control things much better. With 10 mgs, there is very little to no effect on the dermis thickness and very little effect on the epidermis. It may make some more sensitive, but as we all know everybody is unique.

    Maybe this would be a better post for those interested in accutane...

    Oh and here are just a couple of links to some studies:

    http://web.archive.org/web/200302011...lt0798-10.html

    http://www.ncbi.nlm.nih.gov/entrez/q...t=AbstractPlus

    See also (Plewig is very well known derm among derms):

    Plewig G, Nikolowski J, Wolff HH. Action of isotretinoin in acne rosacea and gram-negative folliculitis. J Am Acad Dermatol. 1982;6:766-785

    Plewig G, Wagner A. Anti-inflammatory effects of 13-cis retinoic acid: an in vivo study. Arch Dermatol Res. 1981;270:89-94

    Hoting E, Paul E, Plewig G. Treatment of rosacea with isotretinoin. Int J Dermatol. 1986;25:660-663.


    I also have been a patient of of the father of retin A, Dr. Kligman from the University of Pennsylvania, who also studies and prescribes accutane. for severe cases.

  10. #80
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    I think this thread raises some very interesting issues concerning the degree of clinical evidence and causal inference needed to assert that a given treatment regimen "works" for rosacea.

    I would suggest that accutane is well ahead of the curve -- there is no doubt that it controls rosacea symptoms in a significant number of sufferers. So I agree with Trey completely here. I am slightly less in agreement with assertions that we understand why it works. His second reference (from 1984) makes the claim that it is reduction of sebaceous glands that leads to this improvement. More recent papers mention (broadly) "anti-inflammatory" actions, which I personally tend to believe (I am a huge accutane fan), but I think are still a bit unsupported in my mind. I do not buy the accepted sebaceous-gland reduction argument for rosacea (because the accutane action on rosacea can be observed in a shorter time that it takes to impact seb gland activity).

    On the other hand, the action of both systemic and topical antibiotics is not all understood in the context of rosacea, yet any derm will immediately prescribe them within 5 minutes to a patient presenting with modest rosacea symptoms. Why? Because there is some clinical evidence that they work. Not because anyone believes they understand why they work.

    I see three classes here:
    (1) Things that work anecdotally (e.g. RLT and some SSRIs),
    (2) Things that work based on reasonably complete clinical studies, but with little understanding of why (e.g. systemic and topical antibiotics ), and
    (3) Things that work in a clinical environment and for which there is some understanding as to why (e.g. accutane, and probably anti-histamines).

    A related discussion is where clonidine and propranolol fall -- some would claim (3), but the clinical studies are lacking here. Wilkin's studies many years ago are still about the only studies available, and they were are hardly conclusive.

    And where does IPL fall? Clearly it is well understood why it works. See Andrew Reid's blog for some recent mathematical modeling of IPL and laser mechanisms. But has it been "proven" clinically? Personally, I don't think so.

    Why all the bickering over RLT? Just accept it in the context of (1), and hope that it moves forward to (2) or even (3). If it works for you, then go for it. If it doesn't, then it is no different than a ton of other rosacea regimens. And if you don't really care (like me), stay tuned for more evidence, either anecdotal or clinical ...

    Rick

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