I want to start a thread that concentrates on anything that helps - or anything tried that doesn't help.
I've been prescribed Dapsone, Alegra and Advantan - no improvement after 14 days
I've read that Ultra Violet B was completely successful for 70% of patients after 10.9 weeks and I can email that study to anyone interested. Ultra Violet B is provided by the sun but one person on this forum reported getting worse after spending time in the sun.
EM
From elsewhere on the web:
Lycopene
Antihistamines
Immune-suppressing medications, such as cyclosporine (in severe cases)
Lidocaine mouthwashes -- to numb the area and make eating more comfortable (for mouth lesions)
Topical corticosteroids (such as clobetasol) or oral corticosteroids (such as prednisone) -- to reduce swelling and suppress immune responses. Corticosteroids may be injected right into a lesion.
Topical retinoic acid cream (a form of vitamin A) and other ointments or creams -- to reduce itching and swelling and aid healing
Topical immune-suppressing medications, such as tacrolimus and pimecroliumus -- but lesions must be watched carefully for signs of cancer (I don't know what the 'signs' are - EM)
Dressings may be placed over topical medications to protect the skin from scratching.
Ultraviolet light therapy may be helpful in some cases.
Oral retinoids (acitretin)
My partner has recently been diagnosed with, and had surgery for, oral cancer which involved cutting out the affected portion of her tongue and replacing it with a flap of skin from her arm. This new flap of skin developed lichen planus in exactly the place where her original tongue had suffered from OLP for many years (the surgeon actually confirmed that in a small percentage of cases OLP can be a precursor to oral cancer, but says he has never seen OLP return to a reconstructed tongue).
It seems conventional medicine doesn't have much of an idea about how to treat OLP so I suggested to her that she try colonic hydrotherapy (colonic irrigation) to address her chronic problem with constipation, in the belief that skin problems can be a manifestation of a build-up of toxins in the body due to inefficient elimination. Within a few weeks of having a series of colonic irrigation treatments the OLP seems to have cleared up, although she was also having steroid mouthwashes prescribed by the surgeon.
I know that the medical establishment can't accommodate these alternative-type approaches to disease treatments, but I can't help feeling that this would explain both her many years of suffering both constipation and OLP and why it returned after surgery and why it has now resolved itself.
Has anyone any comments on this?
Yo Ron:
Since you have at least these four possibilities, steroid mouthwashes, colonic irrigation, placebo effect
and spontaneous remission to consider, it would be hard to say which one was the effective treatment. It would be interesting to see a study that used a control group who did not have chronic constipation.
"skin developed lichen planus in exactly the place where her original tongue had suffered from OLP"
Amazing. Normal LP lesions almost invariably appear at the site of an injury, did this happen after the surgery had healed or could the surgery itself have triggered the reaction?
When I started this post I wrote - "no improvement after 14 days" when using Dapsone, Alegra and Advantan for normal Lichen Planus. I'm happy to report that there was a lag time before the Dapsone began to work. I was clear of all but the purple scars after 40 days.
I'm not sure if LP treatments are appropriate for OLP but a doctor would know. If you do try it, don't go longer than 40 days on Dapsone, you end up suffering from the cure.
EM
Yo EM,
I totally agree that the evidence from just one case is inconclusive, that's why I thought it might be good to 'compare notes' and see if more evidence can be gathered. I have already heard from one contributor on this site who says he will try having colonic irrigation to see if it helps......that's what I had hoped might happen and I also hope it works.
Additional evidence from my partner is that she had suffered from OLP for most of the past 20 years and had only been prescribed steroidal gels to treat it with. At the end of about 15 years she did have a spontaneous remission and was told by a hospital consultant that OLP does tend to have a 15 year 'cycle'.
During this time the only triggers she was aware of were episodes of increased emotional stress and certain foods such as spicy foods and bananas, but she was also, of course, suffering from chronic constipation throughout this period.
Yo Ron:
I can confirm the 15 year cycle but I don't get depressed and eat spicy food every 15 years, I'm depressed and spicy all the time! Curious that the immune system can suffer some sort of confusion which then goes away despite the fact that nothing really changed for me. Spontaneous Remission is just a doctor's way of saying 'we don't know WTF happened.' I noticed that dermatologists like to use terms like 'stress' because it's a nebulous, unquantifiable factor that you 'might not be aware of.'
The first symptom for me was raised itchy welts on my shin that eventually stripped the pigment out of my skin and killed my career in the beauty pageants.No one knew what it was because it didn't look like the pictures on the web. The raised, flat, large, bright purple welts on the backs of my hands were the next thrilling feature - Dapsone fixed it for me that time but I had to wear a lot of self adjusting foundation cream.
I've concluded that we're on our own, not much research gong on that I know of. Richard Dawkins once said that when Alternative Medicine is rigorously tested and found to work, it becomes 'medicine' - I agree with that and I'm not expecting much help there.
Interesting though, there was a time when LP and OLP sufferers didn't have it. What changed might be the best clue to an explanation.
EM
Golly, EM, that sounds pretty nasty.
I know it's nowhere near as severe as your experience, but I had a persistent skin rash on my forehead for some years which I tried to control by changing my diet and by the use of corticosteroid creams, but without much success. Just recently it has cleared up, once I started taking a daily dose of macrogol (a substance that retains water in the bowel and thereby assists in regular bowel movements). ( Dispensed under the name Laxido or Movicol). (It's NOT an irritant laxative like senna etc). I now have at least one bowel movement per day and completely clear skin on my forehead. The skin on my face has also tended to get quite itchy, but I've discovered the trick here is to stop using any cleaning products on my face whatsoever........no soap, no shower gel and not even baby shampoo/soap.......before that I had assumed that the less oil and muck was on the skin the better........WRONG!!!
Ron
An added bit of evidence came recently in a TV program which followed an Aussie guy round America who had cured himself of Urticaria (a severe skin rash) by changing from an unhealthy diet to one consisting only of juiced green vegetables. Although this is a somewhat extreme 'cure' it does tend to confirm the notion that the skin is an organ of excretion (via sweat etc) and that when the 'insides' are toxic then the 'outsides' will be affected as the skin tries to get rid of the excess toxins.
I can buy that. You're not supposed to wash a dog for the same reason, it's skin has its own ecology. I think we'd all be healthier if we went veg and ate no fat or lean, dumped all processed food and evils like Coca Cola - but in this context I'd like to see a stronger connection between cleansing (for want of a better word) and Lichen Planus. What about all the other sufferers who are not constipated?
The steroid treatments smell like a red herring, and as my doctor pointed out, you can quickly get into much more serious things (like liver damage) trying to pursue the cure for a skin condition that eventually disappears on its own.
The most serious part of it for me was the horrible purple welts, they looked foul and were hard to hide and that made people reluctant to shake my hand. I found the rejection disturbing and you can't launch into an explanation of how harmless it is to others when you're meeting a real estate client! Then when I discovered that it had no known cause or cure, I went from the normal level of depression and spiciness, straight into the abyss (the same abyss that had that creature at the bottom of it).
So the real damage for me was psychological, and I wasn't expecting it. "Big fat tough guy seeks small dark room to withdraw to." 
Try Arsenicum Album, homeopathy treatment, I have had Lichen planus for over 20 years, and it works every time I have a flare up, its worth giving it a try, and it may work for you.
Hey Elephant Man...check out my post regarding Wild Oregano Oil..its very interesting,.
How do I find the post?
After I started taking 6,000 units of Vitamin D, my lichen planus completely went away. I take 3,000 units with breakfast and 3,000 units with dinner. I wanted to share this because I was so miserable. Back in July 2008, just a few months after retiring, the sores in my mouth started. They never really went away and sometimes got so bad, I couldn't even drink water or talk. Last year, 2013, I started taking the Vitamin D. Apparently, when I was working driving to and from work (40 minutes each way) I was getting a LOT of sun via the magnification of the sun on the windshield of my car. Once I retired and was not driving hardly at all -- the terrible sores started. I even had 2 biopsies (at the request of my gum doctor) -- once in 09 and once in 2011. I know the Vitamin D works because last summer, during a migraine where I couldn't keep anything down and therefore couldn't take the Vitamin D, the sores came back. Once I got over the migraine and stopped vomiting and I resumed taking Vitamin D, the sore went away. Now I can enjoy eating once again. I really hope this helps other sufferers of this painful mouth condition.
Pretty amazing - and I just happen to have a huge quantity on hand so I'm going to give it a shot. D is created by the sun I believe so everything you said makes perfect sense. When you say units, do you mean milligrams?
Thanks for the tip - I'll post back with the results.
EM
I hope it works for you. Most meds and vitamins are measured in miligrams. But Vitamin D and Vitamin E and some others are measured in IU -- units.
Thanks, it's probably on the bottle
ElephantMan, did Vit D work for you at all?
gman:
I have to say no, it didn't. I'm in the desert in Mexico and there's no shortage of UV light for about 361 days a year. A plastic bag will crumble in your hand after being in the sun for just a couple of days - damaged by UV light. It's enough to break plastic lawn chairs, though when mine broke I went down talking and I kept the cocktail upright!
I did try consuming as much vit D as I could for as long as I thought would yield results but no change. But that's for ME. I'm on pain killers at all times, I'm a heavy smoker and drinker and it might be that the vit D just didn't really have a chance. I wouldn't write it off just because it didn't help me. Frodo seemed very sure that it was his cure, he saw cause and effect when starting and stopping the D treatment - worth trying...
eman
Thanks for the prompt response. Also I have always maintained that maintaining the cocktail upright while your body is en route the floor is an art...
I am going to attack this with a combination is of Vit D, immuno suppressant ointment that the doc recommended, homeopathy and de-toxifying type diet that some have mentioned here. Doesn't make for good science experiment with so many v variables, but I want to fight this aggressively before it becomes itchy /rashy... Will report in a couple of months.
I think the detoxing is the way to go. There's a lot of evidence to suggest that if we only left the body alone (no processed food, junk food, smoking, drinking, pills and other poisons) - it would heal itself. In this case I think it means allowing the immune system to recover.
I was lucky to find a local dentist who knows a lot about LP. He prescribed a mouthrinse concoction of two prescriptions which they compound for me at the pharmacy: Dexamethasone and Nystatin. I swish and spit four times a day, three minutes each time. Works beautifully and he says he's found it by trial and error over the years. Dentist is Gerald Cioffi in Jacksonville, FL if you need to find someone in that area, he's great.