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

[findingaway]

Sorry if you posted this earlier, but I looked and couldnt find it..

How many treatments have you gone through so far at day..3 I think? 2 treatments I would guess?

How close did you put the machine to your skin? I think I remember you stating that you did 15 minutes on each cheek and then your forehead. If not, how long did you use it for?

Sorry for all of the questions..this is all a bit overwhelming, haha.

Have a good one!

Not a prob. Yes all very confusing. Just starting to get my head around some of it!

2 treatments so far. Will do another tomorrow (Day 5) or Sat (Day 6). That one will be red.

Only done 5 mins on each cheek (Inc eyes) and forehead (5 min each). Both about 1/2 inch away.

So are you gonna start?

[Rand627]

I think so. Gonna see if my parents will subsizide it so I don't go poor, hah. I just bought a ridiculously expensive razor to see if it would help with irritation and the like. So far I hate it and I have a few more weeks of return policy. If I end up returning it I'll buy it no questions.

I'll know within the next few weeks I suppose!

So how did you get your start with Rosacea? Was it a family history type or just randomly popped up? I'm an accutane induced flusher myself.

[findingaway]

So how did you get your start with Rosacea? Was it a family history type or just randomly popped up? I'm an accutane induced flusher myself.

Well it all started many months ago (tho seems like a life time ago). I came in from laying on the garden swing in the sun and my landlady said I looked a bit sun burned. I looked in the mirror, but only one cheek was red.

That redness never actually went away, although it faded and would flare.

I then started getting a gritty sensation in my eyes. The optician said I had MGD. Then that same day, I was 'mildly' embarrassed about something and blushed, to which the person responded 'your always blushing you'

Still I didn't piece any of it together until I googled MGD to find out what it was. It said it could happen in conjunction with Seborrheic Dermatitis or...Rosacea. I googled rosacea and when I read about the frequent blushing and constant red, it all started to horribly make sense. I also was very afraid by the statement made by many sites that rosacea is worse in men...

It's worth noting that just before all this came about I was having a really hard time at work and was trying to run a business in my spare time. I was exhausted, but just kept pushing myself.

One day after a night out on the town, woke up with with extreme anxiety. I'm not an anxious person so this was a surprise. I stopped sleeping, not by choice mind, but because (looking back now) my adrenal glands were shot. It went on for months. I never thought id be the same again and ironically also read the line 'anxiety disorders usually don't go away and can get worse over time'. Melatonin and Rhodiola Rosea were my saviours! (although I don't take either anymore) Anyway - that's for another forum.

Over time, my blushing kept getting worse. I joined a dance class with a group of friends and flushed really badly at even the slightest mishap in my steps. It was made more awful by the fact that they had huge mirrors in the studio we danced at. So I was constantly checking myself. I was getting very depressed and wondering what was going to come of my life...

The phase 'been out in the sun a bit too long' was becoming quite commonplace in my life. There is a health food store where I live, so I consulted them for advice. They gave me milk thistle and sent me on my way with the line 'you won't see results for at least 3 months'

I started learning all i could about Rosacea and MGD (Ocular Rosacea). I has just invested in an iPhone and found that I could be googling wherever and whenever. Seeing as I read it was not curable and progressive, but spurred on by the text I'd read in some articles about rosacea 'it can be reversed or at least better controlled if caught early' i went on a mission to find out how to fix it.

I googled everything to do with the disease. This forum, needless to say, has been a massive help! I also booked an apt with the doc, who was useless and said I was too young to get rosacea. He gave me nizorol shampoo and told me it should clear up in 6 weeks or so. It didn't.

I tried so many things to try and control it. My eyes were getting much worse and I developed lesions in my eyelid. The Rosacea had spread to the other cheek. However, it was still mild. By no means severe.

I started cross referencing everything I read, collaborating it. Which is so difficult when it comes to rosacea as no one thing seems to work for all.* I found two sites that proved to be very useful, http://www.ncbi.nlm.nih.gov/pubmed and http://www.hon.ch/ which showed actual scientific studies.

At this point I was taking so many things from multivitamins to milk thistle. I was feeling really down and I kept (silly I know) pushing triggers - staying out in the sun etc to see if it really was rosacea or something else. I was hoping it was a mimic!

I went back to the docs (different doc) who said it was rosacea and gave me Oracea. He said I was young so it was probably transient...I googled Oracea, but since I didn't have P&P I never took it. Damn docs! I reluctantly decided to drop everything that didn't have some scientific backing. I also added in zinc. See my signature to see what I use.

By this point burning was a daily occurrence and I looked like I'd been punched in one eye as the lesions made it look puffy (a warm compressed previously didn't work, but I found a method with a cotton bud that helped). Zinc helped with the burning.

As well as the scientific studies I wanted to see if I could figure out why some treatments work for some and not all. So I created a survey, the first of which is about RLT.

Finally, finally. Some months later things are starting to improve. This is my best day yet. The redness is definitely less. The burning has gone. My eyes feel a little better.

My mum gets flushed, but doesn't have rosacea. My dads skin is great. Sisters all all fine. Just me :/

Sorry for the long post!!

So what about you? Were you taking accutane for acne and you think it induced rosacea?

[Rand627]

Yep. I started getting acne at..13 years old or so. Didn't really care about it till my parents insisted I see their friend. She's not a doctor by any means but she gave me facials. Didn't really like them, but I wanted to listen to my parents. I eventually got doxycycline from the cosmeticians nurse. Didn't really do much. After about 2 or 3 years of this same routine I finally went to a derm. She put me on retina and tetracycline. Didn't work..and after about 6 months of that I got on accutane. Went on 3 high dose course of accutane. Totals to about a year and a third on 80mg of accutane. Which is quite a bit.

Don't have a single bit of family history of rosacea, I'm a guy and I'm only 19. I don't have a single risk factor for rosacea. Looked it up online and saw that many other people had the exact same condition as I did. I went to my derm about the problem (the one who prescribed me the accutane) and she REFUSED to believe it had anything to do with the accutane. She said it was because of my family history. Even though I had none, haha.

So yeah, it's definitely possible that I would have developed it without the accutane. But it's much more likely that the accutane caused it. A least, in my opinion it is.

What's interesting to me is if someone who has your type of rosacea, whatever it may be, versus people like me who have accutane induced rosacea. Will RLT help both of us? It seems like it's helping you, but who knows if it would help me. I think i'm gonna start a topic and ask if any accutane induced flusher has tried it.

[mrsmoof]

HI Rand.. been in the supermarket lately? I had to ask!

[Rand627]

Haha..I recycled a bunch of cans this morning and went in to exchange the little ticket for money. Nothing much happened to be honest. Although I am beginning to wonder whether or not my monitor is affecting me. Always seems like I get red when I'm on it.

[mrsmoof]

Haha..I recycled a bunch of cans this morning and went in to exchange the little ticket for money. Nothing much happened to be honest. Although I am beginning to wonder whether or not my monitor is affecting me. Always seems like I get red when I'm on it.

your monitor? Also, how is your skin overall on the Mepacrine? Still improving?

[Rand627]

Seems like it hit a plateau to be honest. Can't say I've seen improvement over the past few weeks.

And yeah, monitors have CCFL backlights in them. They are florescent bulbs.

[findingaway]

Yep. I started getting acne at..13 years old or so. Didn't really care about it till my parents insisted I see their friend. She's not a doctor by any means but she gave me facials. Didn't really like them, but I wanted to listen to my parents. I eventually got doxycycline from the cosmeticians nurse. Didn't really do much. After about 2 or 3 years of this same routine I finally went to a derm. She put me on retina and tetracycline. Didn't work..and after about 6 months of that I got on accutane. Went on 3 high dose course of accutane. Totals to about a year and a third on 80mg of accutane. Which is quite a bit.

Don't have a single bit of family history of rosacea, I'm a guy and I'm only 19. I don't have a single risk factor for rosacea. Looked it up online and saw that many other people had the exact same condition as I did. I went to my derm about the problem (the one who prescribed me the accutane) and she REFUSED to believe it had anything to do with the accutane. She said it was because of my family history. Even though I had none, haha.

So yeah, it's definitely possible that I would have developed it without the accutane. But it's much more likely that the accutane caused it. A least, in my opinion it is.

What's interesting to me is if someone who has your type of rosacea, whatever it may be, versus people like me who have accutane induced rosacea. Will RLT help both of us? It seems like it's helping you, but who knows if it would help me. I think i'm gonna start a topic and ask if any accutane induced flusher has tried it.

Rand,

That's arwful to have it so young. But I'm comvinced you will find something that works. Being young, your body is much more able to repair itself and it sounds like you've thrown your body out of balance with all the drugs.

Have you tried probiotics? Say Kefir? Might help with your overall health as antibiotics tend to wipe out the bad and good bacteria.

I think RLT could work for you. The mechanism in which it works would be the same for us both, regardless of the cause. From all the reading and reports and discussions with people, I have only ever heard of one report where RLT had a detrimental effect (the amazon review you posted a link to earlier in this tread) and even then I would guess some medication they were on interefered with the process!! Like NSAIDs do!

[Rand627]

I have tried probiotics but only for like..a week at a time. I'll get a bunch later on as I really love yogurt. May as well get the probiotic kind!

And yeah, I really want to try RLT. The only issue is money. If I get it and don't like it it's 130 dollars down the drain. Can't really sell it on ebay, there's no market for it. Do you ever get burning on your ears and if so, did the RLT help?

And something interesting to note. I got a prescription from my doctor for retina cream .025. I had used it in the past for acne and it seemed like it had help. I have been getting little micro pimple things around the top half of the cheeks underneath the eye and around the mouth. None on the cheeks.

The cream has already completely cleared up both areas. Only issue is I used too much (reccomended at once a day, used it twice for 3 or 4 days) and I'm getting some peeling. Gonna push it back to 3 times a week and see if that's enough. It's amazing how fast my body responded to it. Kind of like when I was on accutane, it only took 3 or 4 days for my acne to completely clear up after I had been on it a few times before.

[Rand627]

Gosh dang I folded. I talked to the owner of the LEDman website and he let me get it the infrared/red model for the christmas price sale..so 120 bucks. I will definitely keep a log and let yall know how it goes.

[findingaway]

Gosh dang I folded. I talked to the owner of the LEDman website and he let me get it the infrared/red model for the christmas price sale..so 120 bucks. I will definitely keep a log and let yall know how it goes.

Good for you Rand!

So what is going to be your routine?

Here's my update:

Day 7
I used the device again yesterday (Day 6) for 8 minutes on each cheek (inc eye) and my forehead. All red. Immediately after, my face was definitely more red with some very distinct red marks. This was AM. This redness didn't subside much all day. I then went out drinking last night (I am suffering today!) and after my first pint, I was a little dismayed to see my face was redder on my cheeks. Usually alcohol seems to make my paler! Anyway, walked out i the cold to the next pub, which was boiling and flushed!

RLT seems to make my skin more sensitive for a while after treatment. It's also worth noting that my eyes were quite sore yesterday and are not a great deal better today.

Having said all of that. When looking in the mirror this morning, the red seems to have faded again. I would say the base redness is less. Not much, but enough to notice.

I also dropped my Vit D3 intake down to 10,000IU while I wait for a test to check my levels again.

[Melissa W]

Hi Moore,
I have not had time to read this thread yet but I just caught your post and I see you went drinking after you used RLT and I just want to caution you that while RLT may be helpful in calming down your symptoms it will not be helpful if you continue to expsose yourself to your triggers.

So, if alcohol is a trigger (and I know you mentioned it usually is not but it seems like it may be based on what you wrote) doing RLT will not allow you to drink as much as you want without suffering the side effects. You must use RLT in conjunction with avoiding your known triggers. Anyway, just thought I would add my opinion and feel free to ignore but thought it could be helpful for you. Good luck!

Melissa

ps moved this thread to the appropriate section btw.

[findingaway]

Hi Moore,
I have not had time to read this thread yet but I just caught your post and I see you went drinking after you used RLT and I just want to caution you that while RLT may be helpful in calming down your symptoms it will not be helpful if you continue to expsose yourself to your triggers.

So, if alcohol is a trigger (and I know you mentioned it usually is not but it seems like it may be based on what you wrote) doing RLT will not allow you to drink as much as you want without suffering the side effects. You must use RLT in conjunction with avoiding your known triggers. Anyway, just thought I would add my opinion and feel free to ignore but thought it could be helpful for you. Good luck!

Melissa

ps moved this thread to the appropriate section btw.

Hi Melissa,

Alcohol isn't usually a trigger for me. If anything it makes me paler.

Completely agree about avoiding triggers still. This I am doing. Some I don't seem to be able to avoid, like last night when I walked from out in the cold too a very warm pub! Grr.

With RLT, did you experience any changes apart from anti-inflamatory response from the treatment? i.e. new red patches that come and go. Or a light worsening of symptoms before they then seemingly get better again?

I looked better then I have done in a long time this morning, but after the shower, I then looked a little redder and the red had seemed to have spread. Two hours later and I look how I did when I first looked in the mirror - better then usual...

PS - Would you be able to fix the link in the first post by any chance?

PPS - If you haven't taken the survey already, it would be really good if you could as it will help build up enough responses to publish the results

Thank you!

[Melissa W]

OK I hopefully fixed your link.
I did try to take your survey but it wasn't cooperating for some reason. When I have more time I will try again but you might want to check it out as it just wasn't working when I tried to go to the next page.

To answer your questions it can make your symptoms a bit flarey at first but I suggest doing less is more and better to go slow and build up gradually then doing too much at once.