Oral Lichen Planus183 messages in this subject.
|I have decided to keep a record and share it of the mouth sores (or lesions) that I have had off & on for 4 years.|
They affected my life and the lives of those around me.
Let me start off by saying that I have seen 7 doctors and dentists (and finally, the 7th - a dentist, doctor and immunologist finally found a mouthwash that gives me relief). I have to travel over an hour to get to his office, but it is worth it.
I will probably use this mouth wash for the rest of my life. I started taking it 6 times/day, and now, am taking it twice a day.
It has a steroid in it, but since you don't swallow or ingest it, I should be o.k.
Each medical person (inc. my own m.d. & dentist) asked me if I was under stress, a common enough diagnosis. My answer to each was: "Of course I'm under stress, they hurt!"
While in the throes (until April of this year), I lost 8 pounds; weight I could not afford to lose.
I kept a journal (I have kept journals over the years on special events of my life, starting with a diary in my early teens).
I live in northern Florida, & have travelled down to U. Fla., Gainesville to see a specialist there, and to Orange Park.
I have found out a couple of things: gaining back my weight and being able to eat is a blessing (no religion involved).
Going to the dentist - even for a cleaning is a hardship. A couple come back when I went to the dentist last week, but fortunately, bombarding myself with the mouthwash helped. In other words, anything foreign in my mouth is an assault.
Originally, I was diagnosed with a virus. (I was even taking anti-virals)
But then, it morphed. I have now been diagnosed with lichen plantis.
I have taken the gamut of meds: lidocaine (which helped the pain when I had it), chlorehexidene, clotrimazole, nystatin mouth wash, prednisone, dexamethasone m.w., and hydrocodon ( I took myself off of that).
I lost enough weight to alarm my primary doc. I had to have iron and B12 shots for 6 wks. (once/wk.) I'm now just on the pills.
I hope that the alarming symptoms are in my past. But, at least I have some confidence that I have them under control.
|Margery B 31 July 17|
|At 59 years I was diaognised as OLP, tried soft tooth brush, mouth wash, cortisone gels, turmeric tablets even laser cleaning of gums. It got worse with stress. Visited a lot of doctors and dentists to cure OLP. I learnt we have to figure out the underlying cause, since I've thyroid problem I connected the dots to auto immune problem.|
I went to a naturopathic and he asked me to open a good probiotic capsule with 50 billion count into half a glass of water first thing in the morning and swish in the mouth for a while and swallow until it coats your well and before going to bed. This helped me a lot and has cured OLP after two years.The good flora in the mouth strengthens to check the bad bacteria from growing.
|Shashi 20 November 16|
|Hi, was at the dentist 2 weeks ago and was told that I may have OLP - white swiggly lines on both inside cheeks and white spots on both sides of the throat.|
Dentist suggest a biopsy in 3 months. Meanwhile had done a LOT of research on the subject. Read all the comments in this forum and had applied some of the suggestion - dietary change, less stress, mouthwash, etc. Found out that TURMERIC (Curcumin) could be a cure of OLP and been having Turmeric Tea every night for a week now. Will keep all informed of progress.
|Lin 19 November 16|
|I found this discussion board a couple years ago, and have tried a number of things - thanks to all for sharing. My OLP was bad for a couple years but has gradually improved in the last year or so. I believe that OLP is like many skin issues - caused primarily by stress - something I have due to my work and family. A number of things I have done are: using organic/ natural soaps and shampoos, using Theraneem Neem tooth and gum powder instead of toothpaste (I can't tolerate the high mint flavourings and this product also cleans your teeth really well!), I do find peppermint tea and other teas to be helpful, avoiding spicy food is a must, exercise and deep breathing will help to reduce your stress as well as reading and playing music, I have been vegetarian for over 35 years so I don't think it helps much and I really haven't avoided much (still enjoy dark chocolate!). Probably the most important thing that I have learned is to do regular flossing of your teeth. I learned a while back that people who don't floss are more likely to have heart disease because of the inflammation that develops in your mouth - and goes to your other systems when you swallow saliva. When I heard about "inflammation" a light went on, and I have found that my OLP is mostly diminished now - probably a combination of all the above, but certainly since I have been more regular with flossing. Hope this helps someone else!|
|Working on Stress 29 October 16|
|Is anyone still active in this thread. I've had OLP for 9 years. It's been a really challenge for me. I'm fighting depression and the likes|
|Sandy 3 October 16|
|Hello every one. |
I may have some good news for you, I was diagnosed with OLP 6 months ago, it's not bad but I can not have chilli and very warm food and drinks. The doctor told me there's no cure and that it may last for a very long time. I was prescribed steroids and mouth wash but it Wasn't really helping. So someone told me to go see a Bio-Medic.
I went to one and after 3 hours of testing, my Bio medic prescribed some drops. It is helping but very slowly I can see it and feel it improving.
I would recommend for everyone to do abit of research and then go to see one. It may evan work for some it's worth a try.
I hope everyone finds what's triggering it. Good luck Guys
|Naveed 28 September 15|
I was just diagnosed with OLP an hour ago by an ENT. I have had this disease for probably two years. Both my PCP and oral surgeon could not diagnose my syptoms. I have white spots under my tongue every morning and discomfort and redness each afternoon. My mouth often feels very dry.
I was prescribed a "miracle "mouth wash to treat each occurence. Does anyone have any advice of what natural remedies have worked? Also, brushing and whitening my teeth is a painful process, does anyone have any good advice for either?
Thank you in advance.
|Wendy Kotch 28 July 15|
|Hello Linda and Anita!|
Sorry to hear you have OLP. I haven’t anything much to offer as advice unfortunately, as not had the same experience as you. Apparently there are lots of different types of OLP.
It seems it is an autoimmune inflammatory condition, and as I have IBS and diverticulitis as well have discovered that Aloe Vera Juice/Gel might help both problems, so now taking that as well….early days yet!!!
Like you Linda this time it started with mouth ulcers under the tongue then spread to other side but it didn’t look like normal ulcers. It was more of a large patch of ‘lacy’ type ulcer. So painful, the burning sensation inside my mouth and lips was horrible. Medication seems to have worked, although burning,tingly feeling still there a bit.
Good luck Anita with biopsy. One thing I noticed when it was really bad this time that I had excess saliva but no swollen glands.
Hope you both find some help along the way, I certainly found lots of tips and advice.
All the best
|Annie 22 July 15|
|I have OLP and am waiting to have a biopsy but last week my salivary gland above my right cheek, presumably parotid, swelled up while eating. I wondered if any one else has had the same problem and if any one knows if there is a link.|
|Anita H 18 July 15|
|I have just been diagnosed with OLP, but after reading all of the stories on this site mine doesn't seem like the rest. In my case my tongue hurt for a month along one edge and the tip. The tip feel like it's raw. Then one day under my tongue there was what looked like mouth ulcers, but they didn't hurt. Then they all just seem to move together to form one large one. I went to oral surgeon he did a biopsy and OLP was the diagnoses. I would like to know if this is similar to anyone else's experience.|
|Linda 17 July 15|
|Erosive Oral Linchen Planus|
I have oral linchen planus, the first time was 3 years ago, confirmed by biopsy after being referred by my Dentist. It wasn't very bad then just inside the cheeks which I was able to manage by avoiding spicy or hot foods. But this time it is under my tongue and has been so painful.
Finally went to Dentist after putting up with it for about 3 weeks and he diagnosed Erosive OLP. My tongue was so painful I couldn't eat or talk, and had excess saliva. He prescribed Difflam mouthwash and Betnesol soluble for two weeks then a follow-up appointment plus urgent referral to Hospital if it doesn’t clear up. Have to say medication is easing the pain and discomfort and it is going away slowly. I have found some useful tips on my journey around the Internet. Peppermint tea was a life saver, so soothing. Changed my toothpaste for one with no Sulphate Lauryl in it (Biotine). My diet (when i could tolerate eating again) has been mainly scrambled eggs, smoked salmon (which I couldn't believe would be okay but it was, can’t remember where I found that info), mild cream cheese, soft brown bread with no crusts, lukewarm Marigold Swiss boullion and Haagan Dazs Vanilla ice cream which was so soothing especially in this hot weather we've had. I’ve avoided all the usual foods i.e. spicy, hot, meat, fruit, crisps, toast….I could go on!!
The other thing I am wondering about is that I suffer from diverticulitis and previously had IBS. The last two flare ups have resulted in taking antibiotics and both times is when I got OLP. Does anyone think there is a connection between either diverticulitis or the antibiotics.
|Annie 11 July 15|
|I was diagnosed with acute Oral Lichen Planus in August 2014. Steroids were not the answer. I embarked on a drastic diet: gluten free, dairy free, sugar free, soya free, caffeine free, fruit free. No vinegar, alcohol, chocolate or honey. Absolutely no tomatoes, spices and curries of any kind, nothing peppery like rocket leaves; I used salt in cooking but not sprinkled on food. No mushrooms or Marmite or bananas ie. nothing which might encourage the dreaded Thrush - which is also a reason to avoid fruit, sugar and honey - even Manuka honey. (A lot of people seem to think there's a link with LP and Thrush.) No E-Numbers between 210 - 219. I did this all at once rather than one group at a time. I used Bicarbonate of Soda toothpaste and made a mouthwash out of gluten-free Bicarbonate of Soda. I put a teaspoon of Bicarbonate of soda in a glass of water and drank that twice a day. Most importantly I took a good Probiotic capsule once a day eg. Pro-30 Max; Yakult etc. is not worth taking. Chinese medicine calls OLP "Stomach Fire" and says that the gut has to be restored if progress is to be made. I also took a Vitamin B Complex 500mg once a day, Zinc Picolinate 22mg once per day Garlic Oil 1000mg once a day and Omega-3 Fish Oil 1000mg once a day. (I tried Aloe Vera but this made things worse.) |
After two months I did not have any pain and even although the lesions came and went, they were not painful. At the end of the third month I had a knee replacement and, knowing that stress may trigger the OLP, fully expected the worst. However, by the time I came out of hospital even the lesions on my lips (the most stubborn ones!) had gone and my cheeks no longer felt as if they had been skinned.
January 2015 now and no symptoms. I try the odd cake and biscuit and one or two chocolates without problems and I will continue to try out different foods but basically I still keep to the "diet" as I do not want a reoccurence of the dark days I experienced last summer. At least there was a bonus - I lost 2 stones in weight and felt so much better!
I know the Consultants say that OLP can come and go - and it might be that mine would have gone anyway. I have no way of knowing but I feel that it's worth trying the diet factor - although it may seem that it's food-free! I have mainly eaten a lot of fish, chicken and occasional beef dishes with lots of vegetables - preferably organic. I try and avoid too much beef and pork mainly because of all the antibiotics etc. that are injected in to them. A herbalist once told me that the effects of food can take up to three months to get out of the body's system and this would tie in with my time scale since embarking on the diet.
|Shirley. 9 January 2015. 9 January 15|
|I have had OLP for about a year, my tongue and cheeks are so sore and terrible burning. I also get large ulcers. My dental Hygienist recommended Biotene toothpaste for dry mouths, this is very mild and doesn't have Laurel Sulphate in. It has helped lessen the pain when brushing my teeth as other toothpastes burnt my mouth so much I would dread brushing them. she also recommended Gengigel Hyaluronic Acid a natural healing product. This does help to sooth but because it is a gel it is better to apply with a cotton wool bud and try to dry the area before application so it adheres better. I will try the Pep T bag advice.|
|Gail Scaife 11 December 14|
|I think my erosive oral planus started following a hepatitis vaccine. Has anyone else had the same experience?|
|Sally 15 August 14|
|I was diagnosed with Oral Lichen Planus going on two years now. On a scale of 1(good) - 10(bad), symptoms approached 8/9 during the initial 6 months.. I tried everything from prednisone, toothpastes, tea, aloe vera -- all to, at best temporary relief. Thinking the OLP stemmed from a compromised immune system, I began to focus more on diet. First step was to go gluten-free.. This definitely helped, bringing down the symptoms to a more manageable 5 or so. Along with going gluten-free, I went organic, especially with meat & dairy and removed GMO's.. Can't say these steps helped the OLP specifically, but have felt healthier overall as a result.. |
I was pretty much cruising along with symptoms in the 5 range for over a year, until recently when things suddenly changed for the better. First a bit of background, for years I have been taking Omega 3's (fish oil) supplements. In fact, fish oil along with multivitamins served as the core of my supplement regimen.. It wasn't until I ran of my beloved O3's a couple of months back when I stopped taking them for a week or so while awaiting a new supply. To my astonishment, in that week span my symptoms suddenly improved from ~5 to more like 2/3.. Interesting I thought. My new supply of Fish Oil arrived soon after and I resumed taking them. In the next two weeks the improvement stopped and in fact got worse, headed back towards the 5 level. Once definite worsening was observed, I stopped the fish oil supplements, and have been off of them now going on ~5 weeks.. I can report my symptoms have been improving since, now I'm more at like a 1 w/my symptoms, knocking on the door of total remission!
After this surprising development, I started doing more research on Fish Oil.. While 99%of research out there is positive, I did run across an interesting bit of research espousing the potential harm of Fish Oil supplements -> http://www.vancouversun.com/health/Fish+supplements+more+harm+than+good+researcher+finds/7857942/story.html In particular they found: in diets already rich in vegetable oil, fish oil supplements interfered with the ability of cells in the gastrointestinal system to repair themselves.. Running with that -- one could surmise; a compromised gastrointestinal system could lead to leaky gut, possibly leading to auto-immune conditions such as OLP!
This is what I've got to go on for now.. All I know is it's the first time in a long time I've seen meaningful improvement. Will continue to exploit this possible connection -- and hoping it leads to a total and permanent remission..
|Jibby 29 April 14|
|Got it on lower lip diagnosed thru recent biopsy. They thought it was actinic chillitus for the past two years. Used effedex and aldera for the misdiagnosed chilitus. What fun that was. Now that it's better diagnosed I'll have to deal with this. Derm prescribed some steroid ointment, haven't got it yet. Anyone have any success with aloe vera?|
|Joe 17 April 14|
|Just to back up what others have said on this board, I too recently discovered that peppermint tea tangibly reduces the constant pain I experience from my OLP. Like many others, I was skeptical of "natural alternatives" but this tea really has been miraculous for me after trying all the usual commercial remedies|
|MarkT 16 February 14|
|For Bob 8th January 2013|
Sorry I didnt reply last year to your question. I get Soluable Betnesol from my GP, I don't know why you can't get it in Scotland. I would try your GP again, I don't see any reason why you shouldn't be prescribed this. I am suffering again, and I don't know what I've done to deserve a flare up lasting months and months. I actually had a couple of months last year when I didn't need to use anything! I have done nothing different this time. I am also suffering with cold sores on my lips too! I have had a more stressful time I suppose, as just been diagnosed with Obstructive Sleep Apneoa and have to wear a mask at night with compressed air. Anybody else suffer with both ailments, any connection?
|Lorraine, 52 yrs, West Sussex 25 January 14|
|Diagnosed with olp 16 years ago. Didn't have it too bad at the time and got no treatment for it. Have had some lesions every now and then, but not too much pain or discomfort... until 2 months ago. It just came with such a speed and force I was totally surprised! Going to try prednisone (15 days) and "miles mix" (doxycycline, nystatin, benadryl and hydrocortisone mouthwash)... hope it will help! Tired of this and would love to eat some citrus fruits, tomatoes and even somewhat spicy food again... or just eat without pain!|
|mary1963 18 January 14|
|So I have this wonderful OLP crap too. I am going on 2 years with this and nothing is taking it away. I tried everything! I went to the Dr. last week for unrelated issue (ear infection - fluid in ears and had MRI done found a polyp in maxillary sinus) and was given an antibiotic for 10 days (Cephalexin 500mg /twice a day) just in case the fluid in the ears is caused by bacteria. I begged for the medicine too. Well after the 5th day, I was shocked to see a difference with my gums which I didn't expect that at all to happen. I have not felt this great in 2 years. It's still there, I am not magically healed. However, I feel 50% better. All this time my Dentist swears up and down that I do not have gum disease, it is OLP. A Periodontist even confirmed it, did a biopsy, came back as OLP. My question is why is an antibiotic helping it some what? Is OLP related and caused by sinus/ear problems like another person posted? I only have 4 days left of this medicine, and very afraid it's all going to come back after the last dose. I have an appt next month for a cleaning. I will be speaking about this to my dentist. I also have an ENT appt next week for my ears/sinus. I want answers, but seems like doctors and dentists have no clue to the world. They just say it's auto immune related, and out the door you go to see another doctor. It's doctor after doctor. I think bacteria is the cause in my case but probably will never get a confirmation on that. Good luck to everyone out there. Please post what helps you, as this can be very helpful for others who struggle with this. We want answer now and not later! You have to be your own Doctor now days.|
|Marie 5 January 14|
I just want to add that I have had erosive LP on my gums just over a year now. I have had a bipsy done & have tried almost every natural treatment. I have not gone the drug route as it has not been that severe. So far I have been able to tolerate it, although sometimes I'm at my wits end.
1. I took all 8 amalgam fillings out about 8 months ago. It did not help at all
2. Have been taking aloe vera in pill form (250/mg) a day & pure aloe vera juice twice daily and I have to say it has given me great relief. I go days without pain or inflammation. I don't know if its a coincidence but it is helping a great deal.
I've also inherited sinus drainage problems (post nasal drip) that the doctors can't figure out. Does anybody else have sinus issues along with OLP? I am wondering if its all related?
|Niki 2 December 13|
Had a long talk with my dentist about my erosive Lichen Planus, as I had a lesion erupt near a new molar filling this year, after my OLP had setlled down ok, and he said he had a personal opinion that mercury amalgams did cause or aggravate or at least had a link to OLP.
WHAT THE ......WHY WHY WHY would he use mercury amalgams when he diagnosed my OLP 4 years ago. He did say that he didnt know what the filling was that he used.
The other options are to use a composite filling, but if I want that I have to pay for it!!!!
I really cant get my head around this fact. Is the guy negligent or what...
|Fuggs 22 November 13|
|Hello..Thanks everyone for sharing. I am so uncomfortable right now. It feels good emotionally to know that somebody really knows what I'm going through now. I am praying for us all. God has answers.|
|Yummy 8 November 13|
|Not to be misunderstood the CT scan was directly on the head, not on my liver cancer but to seek relief for flushing and redness of face and neck.|
|David Cooper 26 October 13|
|About 10 years ago, couldn't drink hot liquids, kiss my wife, or touch my lips with anything. They swelled up and turned red and had the sores many of you spoke of in the mouth. Didn't put anything in mouth that I felt would aggravate the soreness so ..................................................................................................... |
Went to dermotologist and he told me of olp gave me a brochure. I use Protopic prescription ointment on my lips and usually in 3 days it clears up completely. I have been diagnosed with liver cancer in 2008 ; no relation to olp . However, had a CT scan this morning for something else........and olp flared up bigtime again! Just a simple warning. God bless and pray for relief.....
|David Cooper 26 October 13|
|David - itching and swelling, just a thought, is possible that herpes simplex is exacerbating your OLP, have you ever had any cold sores? If so try hitting some Lysine as soon as the itching start.|
|Dom Walton 20 October 13|
|Does anyone here get an "itching" that just makes you want to jab your nails into your gums when their OLp flares up? and I get swelling in my face too durng a flare up. Anyone else have that happen?|
|David, age 52 20 October 13|
|I have had a rare form of Lichen Planus Pemphigoides for 3 years. Blisters in the mouth - palate, gums, under the tongue etc. I also had blisters appear on my skin, mostly my legs, some of which were the size of a £2 coin. So, I have Prednisolone oral tablets, Prednisolone mouth wash tablets and Prednisolone cream. The blisters on the skin have gone, but not in the mouth. No curries, spices, crisps, biscuits, anything containing lemon or vinegar etc. At one stage I was mincing up meat and veg, but now I just cut everything up smaller. Some veg is too strong but Spinach mixed with Philadelphia Cream Cheese is good. Also pancakes, plain soft cakes, ice cream and best of all, black coffee. The current dosage of Prednisolone is not enough to stop the blisters, but I don't want it increased unless I really have to (weight gain already happened), so I am putting up with the situation for the time being. My worry is the LP is eating away at my gums and loosening some teeth.|
|Jan 25 September 13|
|Well its only been a few days and what a difference using Nasonex nasal spray. My tongue is not as sore and the same with my cheek. I have changed my toothpast to one that does not contain Lauryl sulfate. Sensodyne rapid relief. My specialist recommended changing to a milder one. Also told me it was worth having a murcury amalgan filling out of a tooth that was touching my tongue to see if that had any effect. So getting that sorted after my holiday. I think its worth trying anything, to see if there is any imprvement.|
|Joan 22 Septmber 2013 22 September 13|
|I just found this site randomly...I have had oral lichen planus for at least 8 years, seemingly triggered by allergies to various metals in dental work. I discovered quite by accident that taking grains out of my diet has hugely improved my oral lichen planus, to the point where I don't even know that I have it. I discovered I was gluten-intolerant, and removed wheat from my diet. When my symptoms continued, in desperation I removed all other grains, and was amazed at the effect on lichen planus. Goodbye to dexamethasone, which didn't work well anyway! I have since gone to a mostly veg diet - very little meat and fat, mostly vegetables of all sorts, legumes for protein, and fruit, and many of my nagging little ailments have gone away. I highly recommend it if you are suffering. Also, to the extent that you can get mercury amalgams out of your mouth, and replace crowns made with metal with the newer all-ceramic crowns, you will be much better off. Hope this helps!|
|fordhammsw 20 September 13|
|I have just been to see a consultant at hospital for litchen planus on my tongue which is sore and he says he prescribes flixonase to |
spray on it. He even told me i could use my beconase nasal spray even thought it says not by mouth. So went to my doctors to tell him what he advised, and he gave me nasonex mometasone furate. I am worried about using it, but will let you all know how i go gone on.
|Joan. 18th September 2013 18 September 13|
|I buy ma chi Xian(purslane) on amazon, you need to use it 3x's a day preferably in v8 fusion, gotta up the immune system|
|Lisa Gay 9 September 13|
|My research has identified successful clinical trial for Purslane, a simple weed, the trial results are here: |
After a great deal of searching I have found one supplier of 200mg caps, Which I have just received and will try.
Also a herbal based drug called Setarud (IMod). This is developed through a special process from Rosa canica, Tanacetum vulgare and Urtica through as special magnetic process. Trials showed this to be an effective alternative to treat OLP along with a higher effectiveness compared to ordinary therapies. I gather this was recently developed (IMod) for the treatment of AIDS patients. The trial and efficacy report can be found here:
All is not lost fellow sufferers. Knowledge is power and I intend to ask my Dr. for Setarud and lets see. Hopefully here in the UK thee poor old NHS is not too broke to supply it. I dont want to bore you with all the other stuff I found but I am very interested in the effects of antioxidants in relieving OLP, and actively researching it, does anyone have input there, especially for Purslane described by Qazvin University of Medical Sciences as a power food of the future.
Good wishes to you
|Paul Johnstone 7 September 13|
|Hi all, how nice to find this chat board for like sufferers....|
I am 63, train in the gym every other day and am generally a health food proponent. I consider my diet very good indeed. I only brush my teeth with bicarbonate of soda [baking soda] which does a lovely job and doesn't sting. [Me anyway!!]
Nonetheless, I have had OLP for some 3 years now and it started with white striations around the gum line, it was my dentist who found it. Following a biopsy, [uncomfortable...[ that luckily proved negative, it stayed relatively well behaved until this month when for a reason I cannot fathom has now produced platelets on my tongue and a covering over the roof of my mouth and leaves me with a permanent burning mouth. Not nice.
Previously I have used betamethasone oral wash which always kept it in check, but my Dr. informs me it is no longer available. The cortisone pills dont work so I am at a bit of a loss. Having spent weeks researching it, it clearly is a mucosal disorder of unknown etiology but an immuno problem, seems where auto-cytotoxic T lymphocytes induce apoptosis [is the process of programmed cell death] but the responsible antigen isnt known yet.
So we are up a gum tree at the moment. It seems many different things work for some and not others, but there does seem a little hope.
|Paul Johnstone 7 September 13|
|I read on here that peppermint tea helps olp so being desperate and hardly eating anything for weeks due to the pain I got some peppermint tea and to may amazement it works. The pain eased considerably. I am able to eat again. If I eat something that irritates it unexpectedly I immediatly suck on a used peppermint tea back for a few minutes tucking it into my cheek and against my sore tongue and it sooths it instantly and it STAYS soothed for hours. It has changed my life. Who would have beleived it but the sores in my mouth are showing signs of healing after twelve months of misery. Do try it. It works for me.|
|corinne 31 August 13|
|Despite being a health junky and in general very good health, I developed OLP a few months ago. Had it biopsied & thankfully it is benign. First course of treatment was a myostatin mouth rinse prescribed by my GP, did not help. Was referred to a specialists who put me on the 2 week prednisone treatment which 80% cleared up my mouth. Since being off of it the last few weeks, my symptoms have gradually returned to nearly the state from before the treatment. |
After reading through the very many helpful posts have decided to focus on the following: 1. Lower stress (I feel this is #1 factor) 2. Substitute SLS/peppermint toothpaste 3. Aloe Vera mouth rinses 4. Up vitamin intake
Hopefully this will help put it in remission. Good luck to all facing this condition....
|JimmyG 18 August 13|
|@Lisa Gay: Where do you get your Purslane powder from?|
|OLP sufferer 28 July 13|
|I have oral lichen planus after using flovent for three days for eosinaphalic esophaghitis,caused by food allergies.The crest pro health is best for not burning and purslane powder is ridding the oral lichen,yay|
|Lisa Gay 23 July 13|
|Marie, Tooth Builder toothpaste is quite popular with OLP sufferers, lots of Xylitol, no SLS, and no mint. The sensitivity to mint is common with OLP and can be extreme in some cases, and as it is in most oral health products quite a lot of people don't even get to make the connection. Thanks for keeping us updated with your progress. Best wishes.|
|Dom Walton 26 June 13|
|Sorry it's the Crest 3D luxe that I am using but will need to switch because long time use of that is not good for the enamel. I tried every toothpaste out there, so this is going to be tough finding a new one. It can't have any mint in it, that is a no no for me.|
|Marie 26 June 13|
|I posted on here back in January and giving my update. My OLP is still around, but not as severe. I don't use the vitamin E oil on gums anymore, but it helped some to live w/ the pain. I do recommend finding a toothpaste that does not cause your mouth to burn. I am using Crest 3D vivid for now, does not burn but I am still looking for the right one and may order Squiggle, not sure. If squiggle is so good, why is not sold in our stores? You get use to the pain after awhile and any relief is better than none. I would not go on steroid mouthwash, did nothing for me. Try the vitamin e oil from the capsules for awhile. Rub on gums, it healed some, especially the biopsy areas they did on me but just rub some on once a day. I am going to try it again. It is something I now have to live with the rest of my life. I hate it too. We need a cure!|
|Marie 26 June 13|
|hi june again.im going to leave the steriods out for a week and see if the hair returns,been 2days now and my olp is steadly getting worse,im going to stick it out for at least a couple of weeks,i dont often get to see the consultant only his assistant dr.i defenatly would not reccomend anyone having the injections in the mouth very uncomfortable,i dont no of any one having mouth cancer from this,nobody seems to have a solution to this problem (OLP)the local dr did say this is a very nasty problem not curable only managable.thanks dom for your suggestion,im gratefull for your advice,|
|june hawkins 22 June 13|
|June - make sure you get some answers from the consultant, if he doesn't know or if it is not his specialist area then make sure you get a referral to see someone for whom it is. Taking steroids forever is not really a great solution. We feel for you.|
|Dom Walton 20 June 13|
|hi its june again to keep you informed.|
i,m now still useing the sreroids,2 times a day. keeping in my mouth app 10 mins in the morning and spitting out not swallowing.in the evenong i keep in my mouth as long as possable and then i swallow,although its not gone,seems to be more manageable, much better, can eat normal again ,but ive just noticed that ive lost a lump of my hair about the size of a half penny not to sure what to do now ,the dr s said to keep an eye on it .he doesnt seem to think its caused by the steriods, although isnt that connected to the ammune system?i have a hospital app on 5th aug ill ask the consultant, he might suggest something.in 53 and im wondering if its all conected to the menapause?either way im beginning to feel quite fed up now anyone else lost any hair?
|june hawkins 20 June 13|
|Appreciating the dedication you put into your website and in depth information you offer. It’s great to come across a blog every once in a while that isn’t the same old rehashed information. Great read! I’ve saved your site and I’m adding your RSS feeds to my Google account.|
|Enoch 5 June 13|
|hi june again just to update you.ive been to drs at local surgery.he s prescribed,DIFFLAM oral rinse mouthwash. befor meals plus ive been using( soluble PREDNISOLONE tablets steriods,been using these as a mouthwash for one month 3 times a day keeping in my mouth for as long as i can ,5 or 6 minutes at a time and them swallowing it, much better, then went to see drs again as requested, was told to do the same for another month but spit out instead of swallowing it, for 2 weeks i was doing this religeously got steadly worse and painfull again so im now swallowing again will keep you informed.also been using Squigle toothpaste,purchased from ebay doesnt sting when i brush.ps i tried the garlic clove rubbed on my tounge that was really painfull wont reccomend it ,|
|june hawkins may 14th 14 May 13|
|I am suffering from OLP, and using Med from last one year, Can some one help me how to treat this.|
|Naveed Siddiq 25 April 13|
|I have had lichen planes for years.'been to hospital today for a biopsy.doctor suggested I use a toothpaste which does not contain|
Sodium lauryl sulphate.I have recently tried an alo vera mouthwash and toothpaste from Holland and Barrett which I find
|ron anderson 16 April 13|
|hello all , do you know any body with olp that change too cancer? |
regards to all
|pary 14 April 13|
|hi ive suffered with OLP now for over 2 years, its so sore now, i cry quite often with the pain its so painfull,i had an appointment at the hospital in feb,i was offered steriod injections in my mouth .gums, tounge,etc, it only eases the pain for a few weeks and returns worse,ive been to the health food shop bought teatree toothpaste.and tea tree mouthwash used both for 3 weeks stung like hell so sore .im now washing my teeth with b,of soda, keeps them clean and doesnt sting. im 52 funny when my periods stopped i was gived OLP as a present haha,suffered ever since, its ruining my life can just about eat a korma curry with rice,when in an indian.all other foods seem to hurt,bland foods seem ok but a real effert to eat now,i think ill try crushing garlic cloves next,in the night i have to take a glass of water to bed as it keeps me awake if my mouth gets to dry,sorry if i sound so miserable just needed a rant hahax|
|june 13/4/2013 13 April 13|
|Hi I'm new to the site was wondering if anyone could give me some advice. I'm 30 years old and recently been diagnosed with OLP. The symptoms I have at the moment are quite mild but are getting worse everyday not had any advise from docs (just a leaflet and come back in 3 months!). I am so scared of this thing turning into cancer and I know it's rare but still I live in fear now everyday of how much worse this horrible condition may become . I guess I just wanted to hear from others living with the condition and how they deal with it . My friends and family must be sick of hearing me complaining about it. I guess it's hard to understand how much something like OLP changes your life and not for the better.|
|Vic 15/3/2013 16 March 13|
|For over 2 years I have had oral lichen planus, and like many other posts I avoided any products with peppermint flavoring. I have discovered that it is not the peppermint causing the pain, but probably the other ingredients that are in toothpastes, mouthwashes, etc.|
I began drinking strongly brewed peppermint tea (cooled, no sweeteners) to settle my stomach when I got the flu last month. The flu also aggravated the OLP and it was as bad as when I first learned the diagnosis. To my surprise, the peppermint tea made my mouth feel better immediately. Now, I sip it throughout the day, holding it in my mouth the way that I am sure a lot of OLP sufferers do with plain water. My tongue doesn't burn and my inner cheeks are healing faster. I have tried prescription mouth rinses and their effectiveness doesn't even come close to matching the relief I receive from sipping my peppermint tea.
A web site named Terry Talks Nutrition posted many recommendations for treating OLP, including using peppermint oil combined with the oils of cloves, cinnamon and oregano.
The these recommendations may be too expensive, so I recommend to OLP sufferers to first try peppermint tea that can be purchased at your local Trader Joe's market.
|Mrs. Janis Weir 8 February 13|
|I was going to try the vitamin e when i was driving myself nuts researching online and tried one of the world's oldest remedies. Raw |
Organic garlic cloves. Two nights ago I thought I had mirhing to lose at this point. Today I had so much relief. I haven't felt this in such a long time. I have been told by a naturopath that lichen planus could likely be caused by a fungus/yeast. Garlic kills bacteria, fungus, yeast. Etc. You just crush a garlic clove, let it set in open air for 10 min and take crushings and with finger brush it on affected areas or start chewing and swishing in mouth (as lomg as you can bear). It will start the ating. No pain, no gain. I'm just putting it out there. This is what is working for me, only 2 days but hoping it will cure. I refuse to beleive there is no cure. It just doesnt all of a suddwn occur. Something causwd it to happpen. Stress cant be the only easy answer. Have a great night!
|Niki 9 January 13|
|For Lorraine 5 January 13 post|
I cannot get Betnesol now as in Scotland I have tried chemists all over the place but have been told it is now off the market are you still getting it in UK. Much obliged if you can let me know which group of chemists still prescribe it as my OLP is a nightmare since changing to other prescribed stuff that just does not work for me.
Thanks a lot.
|bob 8 January 13|
|Yes I use the vitamin e oil from a capsule of Nature Made 400iu. I rub alittle on twice a day but no more than 1 capsule a day total. It healed my gums a lot but I'm no doctor so no clue if if this is the answer. good luck.|
|Marie 6 January 13|
I am new to this site. I was diagnosed with Oral Lichen Planus a couple months ago and my life has changed dramatically because of this. I just turned 47 and coincidentally like Marie, I too was diagnosed with shingles. (mine is internal). I truly beleive there is a connection although my pathalogist thinks there isin't. I have lost faith in doctors as it took about 4 or 5 months for them to determine I have shingles. Marie, I will try the vitam E. Is it Vitamin E oil you are using or capsules? I have been trying to get a hold of the purslane plant which has been shown to be a cure but hard to get here as it is 0 degrees. Will start growing in everybodys backyard probablly around April. But trying to ge the seeds to grow inside my house. I do not want to take medicationa s this is not a cure. And just to add, I am a healthy eater and do not beleive diet had anything to do with it. Something is triggering it.......just have to connect the dots. Wish luck to all on here and hopefully will have a better year.
|Niki 5 January 13|
|Vitamin E oil is helping gums for my OLP that I was recently diagnosed with from biopsy. Only 10 days into rubbing on gums, it's almost all gone. I have been battling this for 7 months. I googled it and saw that it works for gum disease (it heals) so thought I would try it out. I have nothing to lose. I wanted to share this, hope it works for you all too. Also, I changed my toothpaste to Tom's of Maine with baking soda (all natural) so no burning when brushing, I rinse my mouth out with warm salt water (3 times a day), I'm using an extra soft toothbrush (got it from CVS) and it feels better on the gums now, also taking a multi vitamin, eating healthier and now going in to have my teeth cleaned so I don't develop gum disease. I also invested in on a waterpik (helps stimulate gums) using 2 setting though don't use until you have it under control. I have no idea how this happened to me, but keeping it away w/ the Vitamin E oil. It's a miracle! I never want to go through this again. :(|
|Marie 5 January 13|
|I too have just been diagnosed with Oral Lichen Planus. I can thoroughly recommend Squigle Toothpaste - I have realised now how long I have been suffering from it, toothpastes (I have tried many, including prescribed one's!). My mouth is less sore now, I do however take betnosol mouthwash once a day for maintenance and if I get a very bad flare up I take it 4 times a day. I am careful about what I eat, no curry's, tomatoes (in small amounts), no crusty bread, crisps or nuts - as they scratch the inside of my mouth. I did try the prescibed paste to use at night, it just made my mouth worse (I will try and find the name). I am just recovering from lip ulcers, which I get more often than I used to, would appreciate if anybody has any ideas about preventing/treating them. I have tried the usual stuff you get from the chemist!|
|Lorraine 51, West Sussex 5 January 13|
I also experience the burning and swelling but only when I eat or drink something shortly before as I react quickly to wine (grapes) almost all citrus fruits, boiling sweets, some chocolate and definately bad reaction to sultana cake (grapes again), maybe keep a food diary for if you have like myself allergy related OLP then you will react quite quickly, I have had this for about 20 years now and it never fails to surprise me the amount of rubbish that is in the food chain also, preserves, E colours and SLS in toothpaste. There is one toothpaste called Squiggle from this site which can be bought and also health stores sell other brands. Hope this helps.
|BOB 16 December 12|
|I was diagnosed about 4 months ago with OLP. Until recently is was just minor white stuff on my lower cheek. More recently I have noticed pain on my inner gums on the lower half under my tongue. I found a dime size red area. The pain throbs at times, dull aches, some minor burning if it comes in contact with something. I get ear pain along with it. Is this something others have experienced? I go to the doc tomorrow, but I'm worried this is not OLP, but something worse.|
|Gregg 12 December 12|
|OMG another apology, trying to get used to new laptop! I missed out the name of the other steroid tablet (7 December)..... tablet is called Betnesol and that is what doctor told me is now discontinued. Sorry folks!|
|BOB 7 December 12|
|Hi there folks a big apology re steroid tablet called Betametasone, the tablet I was prescribed for OLPl, perhaps it is similar as it is asmall pink tablet which dissolved in water and swished around the mouth. I also discovered from this site to try Saraken toothpaste from Holland and Barrats Health Store, it is without any chemical, a wee bit chalky but pleasant with a taste of mint and very much worth a try.|
|BOB 7 December 12|
Not been on the site for a long time as had no computer but Betamethesone (Spelling??) October 4th by Janets input. I have used these little steroid tablets for 2 years prescribed for OLP. They were so good. Before using them the inside of my both cheeks had actually started to feel eroded by constant rawness when I ate something that disagreed with me ie citrus stuff, chocolate etc, I think most of us have a good idea what sometimes triggers off the pain or ulcers but being on a constant diet of this or that just goes haywire at times. Of course others with OLP are not allergy related. Last week when I tried to repeat my hospital prescribed prescription I was told it is now discontinued and the alternative I was given is an asthma preventer called Clenil Modulite 50 (Beclometasone dipropionate) which it says on the box and instructions are to spray directly on to the mouth ulcer, anyone else in UK been prescribed this. I read other great stuff for all of us OLP sufferers is also off the market. Be interested to here anyone else being given this prescription.
|BOB 7 December 12|
|Just got diagnosed with this OLP too. I am a female, 46 years old, never had it before. Biopsy confirmed it was that. Had it for 6 months, happened right around the same time I got shingles. Not sure if related. No one knows. Could be from shingles, could be stress, could be hormones, could be this, could be that, this is what I hear from every doctor. I'm seeing a Periodontist now and he wants me to put lotrisone cream on my gums. This worries me because I was told by 2 pharmacists that this is not for internal use. Has anyone of heard of this? The pathologist recommended it and uses this at the University for patients. I already tried using steriod/antifungal rinses already and no help, and now using Chlorhexidine Mouthwash (due to plaque now building from this horrible OLP) and see some improvement but still too soon and still there. Very frustrated, would like some answers. Why hasn't anyone come up with a cure? Please let me know if anyone has used lotrisome or what has worked for you. Thank you and good luck to everyone. I may try vitamin e on the gums, very desperate at the moment.|
|Marie 7 December 12|
|I was recently diagnosed with OLP. I have had two sets of antibiotics within one month and GP think this might have triggered OLP. Its painful, not able to eat solids food and fruit. Spicy and hot food hurts my mouth. My face has darkened with the pain. Would like to know what to do|
|Lisa 21 November 12|
|Dear OLP pationts, |
i am suffering same Oral Lichen Planus. doctor suggest some tablets. but its coming side effect. so better to use buccal paste. one of the paste is good . contents are (Triamcinolone Acetonide IP 0.1%) This included oinment ask your medical store. use a week . what's happen . just reply me. thanks. firstname.lastname@example.org
|mohammed iqbal noori 18 November 12|
|Hi, I have just been diagnosed OLP after a biopsy and am on betamethasone tablets dissolved in water as a mouthwash. Was wondering if anyone has been diagnosed with lichenoid reaction as well as OLP. The doctor who did the biopsy had indicated he felt my case was Lichenoid reaction to the amalgam fillings as one side was worse near my fillings. However the biopsy only showed OLP. I am still considering replacing my amalgam fillings on one side where I have more lesions. Has anyone ever had success from doing this? |
Good to share any positive results which might help.
|Janet 4 October 12|
|I am a newly diagnosed oral lichen planus patient and am at wits end. On 3rd round of dexamethsone suspension and on elavil to help with pain and sleep now. Just saw a naturapathic dentist who put me on an herbal mouth wash which burns but feels like my moth is really getting clean. Is this drug gelclair still around as I noticed this posting was from 2007. Would welcome any other remedies people on this blog have to offer. Desperate for help and relief!|
|Liz 12/27/2012 28 September 12|
|Hi all I've suffered with ill for the last six years. Last year was a particular bad year for me. I suffered with huge ulcers on the one side of my tongue. I can only describe them as being like a volcano. It got so bad that these huge ulcers would last for at least 3 weeks at a time . I would then take a trip to the docs who would then prescribe metrodazole anti abiotics. Just recently visited a dental surgeon who says I am to have a biopsy in six weeks rime to rule stuff out. Is this a Good sign that it it nothing serious. Really scared anyone please re assure me.|
|crimson 25 September 12|
|wow..this is very depressing seeing all these messages. I have had OLP for 25 months now. I thought I was the only one in the world..I can't really say anything at all helps..its just my attitude that pulls me through each day. I try to stay positive. One thing I have noticed..I don't think the doctors really believe me..on how awful it is and how much my mouth drains..etc.etc..its like no one understands or believes me. I did have a biopsey to confirm the disease. Is anyone out there who has been cured?|
|Christine 11 September 12|
|I have Suffered with olp for 36 years and i have tried everything but nothing seems to work only prendisalone steriods but only get relief while i am taking them 1 week after stopping its back wish i could find complete cure but nothing yet go regular to dental hospital i will keep hopeing|
|Sheila 8 July 12|
|I have read that a plant called Purslane clears up OLP if chewed or eatten. I can't seem to find it, but it apparently grows everywhere. Has anyone else tried this?|
|Blue 8 July 12|
|I started having symptoms of OLP about 6 months or so ago. A few years ago I started having the mucous membranes of my mouth slough off about an hour after I brushed my teeth. I called the dentist office and they told me it was an allergy to the toothpaste and to use Sensidyne. This helps with the sloughing problem. About 6 months ago I started feeling as if I was biting the cheek at the very back of my right upper molar. Two months laer I told the dentist that I was concerned that my teeth were shifting and that I might need braces. The hygienist told me that my left lower gumline looked like I burned it. It was sore, come to think of it. I also started having pain when yawning or opening my mouth wide when eating a sandwich, etc. I sometimes felt that I had the gum tissue roll up at the bottom of the buccal mucosa, where the cheek and gum meet. Then, two months ago I developed very severe ulcers all over my mouth. At the same time I needed a root canal and ended up with an abscess. The endodontist had to cut through the ulcerations to drain the abscess. It was a very bad week and I lost 4 pounds. I also saw the dentist the same day and he saw the Wickham Striae in my mouth and told me he thought I had Erosive Oral Lichen Planus. I am scheduled in one week with an Oral Pathologist. My symptoms have been waxing and waning every 3 to 4 weeks, just as the literature says it will. It was very bad yesterday, with erythema (redness and swelling) and ulcers at the gum lines. I took photos of it to take with me next week. Of course, with my luck, the symptoms will be better and they won't be able to do a biopsy unless there is a flare. These pathologists only work 2 half days per month, so catching them at a time of the worse flare will probably never work out. I also have some vaginal symptoms at times and think I may have it there as well. I do not have any skin lesions otherwise - at least not yet! I hope I never do! I have not been particularly stressed since having the outbreaks, so do not believe it is that. I do have Type 2 Diabetes and allergies. I developed asthma several years ago, at the age of 51. Now, at 54, I have this. From what I have read, it lasts for about 20 years or so. I need to follow some of the suggestions I have seen regarding diet. I know that some foods (many) aggrevate it, so following a more bland diet and freeing myself of sugar may prove helpful. I will see. Also, I have not been given any prescription medications for it, other than Chlorhexadine mouthwash. It does help me keep my teeth clean without having to scrub much. I have used Protopic (tacrolimus) for my Eczema in the past, which was somewhat helpful. Perhaps it will help this, if they choose to use it. Best of luck to everyone here with this problem.|
|Sheryl 27 June 12|
My two year son is suffering from a mouth desease which i cant realy figure out whether it is mouth alcers or mouth thrush, what is the remedy? the lips and gums has turn redish in colour with pimples all over. kindly help me out?
|bella 5 June 12|
Like yourself I had a trauma big time more than 25 years now and that is when all my mouth problems began, firstly it was a very dry mouth which doc said was caused by stress, horrible slimy fake spittal in a bottle was what I was given to keep my mouth salivitated if that is the right word or spelling and also a spray called Difflam which doctors still prescribe all these years later. I did find it difficult to cope at that time so here I am still at this moment in time still dealing with the stress of bereavement after all these years in the form of mouth ulcers which come and go and made worse by certain food. I used to watch what I ate ie citrus,crisps, sweets etc but really I think it is just now an immune disorder which needs to be contolled by diet, trying to be healthier as I cannot find any solution whatsoever other than I do find toothpste without SLR does cut down the soreness, when you look at this site it seems a lot of sufferers are similar with stress being a big factor, I am sure some folk on the site have different health issues which contribute to mouth ulcers or OLP but I honestly think after all these years when stress is the first factor it is just a matter of keeping it under control to lead a normal as possible way of life. You are not alone, wish someone would help with all the latest technology re health hopefully in time it will come. My doctor now prescribes a small tablet called BETNESOL which is diluted and swished around the mouth 4 times daily when ulcers or OLP is at its' worst then cutting down to use as needed. I think this is about the best one I have found for relief. Hope this info helps you I also take a vitamin B supplement and a one per day iron tablet which makes me have a bit more energy.
Take care of your health is about all you can do at this moment Angela.
|Liz 29 May 12|
|I was diagnosed with OLP 20 years ago and at that time I didn't even know I had it. Four years ago I had great trauma in my life and the OLP kicked in big time. Like many sufferers I have tried,and still try,all kinds of things to fight it. My big problem is that I am a vegetarian and a lot of my staple foods, like tomatoes and onions, have become my worst enemies. I am using Difflam spray to help the latest bout of ulcers etc. I have changed amalgam fillings to white ones. Nothing works. Stress is prevalent in my life and in my personality, it has brought on tinnitus too. Does anyone else have these too things going on intheir lives??|
|Angela 19 May 12|
|hi, i have had OLP for16 yrs and has been much improved over the last 4 yrs. As many others had the biopsy and under the care of dental hospital for many yrs. Predisanol mouth wash helped plus Green peoples toothpaste via webpage helped. Still have low immune system but learned to live with it.|
|katy 1 May 12|
|Just read your input to the site Bruce's re the OLP and all the family stress you have had recently. I am sure we all feel your pain.|
I get great relief from Betnesol steroid tablets (not for swallowing, only for diluting, swishing around the mouth and spitting out) but they really work for me and others on the site reading other folks input.
Please also try the toothpaste Squiggle or others without Sodium Laurl Sulphate. I take the vitamin B complex and a 'one per day' iron tablet which has really helped my general health. Watch the citrus fruits and sweet stuff also; try other folks remedies and advice they offer. We are all trying to find some cure by trial and error. Hope you feel better soon.
|Liz 11 April 12|
|I have read some of the stories and I can feel your pain. I'm going on 6 years with this horrible thing living in my mouth. My Dr. sent me to the dentist and he said yes it's OLP, and he thought that it was caused by stress, OK, so I asked how do you get rid of it? He gave me a script for some drug I don't recall as that was about 6 years ago. No real help lips cracked and would bleed and at times my mouth broke out and I would suffer, as you people would know. As far as stress goes it was a very possible cause. 10 years ago hurt at work, wife finds out that she has thyroid cancer, so we deal with it, two years later breast cancer bi-lateral mascetimy,take a trip to Hamilton Ontario where she finds out that she has lung cancer. So we decide to stay here, sell the house in Whithorse, this we do. This has not helped with the mouth problem. So now I am off compo they cut you off at age 65. But now I am looking into Vitamin B-12 plus Clobetasol cream 0.05%. The cream seems to be helping quite a bit. I am also a dieabetic taking Metformin & Ranitine both of these drugs block the B-12 from being ingested. So I Hope that the combo of the drug and B-12 will work.|
I will post updates as they occur.
Thanks for being their for me.
|Bruce 10 April 12|
|I have had Lichen Planus Erosive for about 4 years. It started as only occasional pain but the more stress I came under the more the pain worsened. I was diagnosed with about every condition there is and finally with the biopsy which was extremely painful I got the right diagnosis. I have been put on Plaquenil with has helped somewhat but it seems like everything I eat sets it off again. I am pretty well living on oatmeal and macaroni and cheese. The only thing I can drink is milk or water. I am diabetic and I can't eat real sugar so I have been using equal for years. Maybe that's one of my problems. I have to use a CPAP machine and the air from that agrivates it too. |
I am at my wits end. I just ordered Squiggle and I sure hope that helps. The doctor is going to put me on more drugs too which I am scared to death of. This is a disease that came from the devil for sure.
|Bonnie Emory 15 March 12|
|hi, all i am suffering from OLP since last one year, i am very depress to know that their is no cure for OLP but i think this disease is cureable in homeopathy, is their any one who have cured by homeopathy treatment, i am taking homeopathy treatment from last one year unfotuneatly disease is not cure but it is under control not too much spread still i have no any painful symptom hope same in future, i wish for everybody who suffer with disease that one day we found a sure treatment for OLP, i am regularly find new investigation & consult with the homeopathy doctors for a sure treatment of OLP, don't worry we will definately find a good treatment for OLP for me and for all of you, gud luck every body.|
|krist 9 March 12|
Been doing good this weather leaving off citrus fruits, wine etc with good results until Thursday when I needed to go to dentist for a filling which had came out, OMG I had the filling replaced and now have a huge ulcer on my bottom lip where dentist was sort of leaning on me and a sore gum where she injected me, as they say 'ye canna win'. three days later and my mouth is so sore I do not know what to take the soreness away.
Hope some of you are better today.
|Liz 4 March 12|
|I was crying when I ate - anything. Then I got a sample of something at local Whole Foods and it changed my life. It is called Chlor-Oxygen. The sample was the capsules, but the liquid is so much better. It soothed all sores immediately. It has been 2 weeks now and I am 90 % better. WARNING!!! Your mouth will turn green. Swish it around, then spit. Do it at night...this stuff will stain clothes. BUT it works. I use Squigle toothpaste and by the next morning and several brushes, my teeth are presentable. I am doing much less now as most pain is gone. One other very, very calming product is hyalauronic acid lozenges by VRP. I tried Gengigal and hated it. Cannot take it - makes me worse. Hurts like hell. But the lozenges were a godsend. I had to use half a bottle a day so it is expensive but it works wonders. I have researched both chlorophyllin and HA. Chlorophyllin has a long history of being used to heal wounds, especially in the army of WWII. HA has some interesting research about its wound healing properties. For me, these saved my life. No cinnamon, no harsh anything, just pure relief. I have been through 3 bottles of the lozenges and will be ordering more. Oh, and folic acid liquid....research it for oral cell health. Love that too. I spent one day just researching because I couldn't live with the pain any more. Glad I did. I bought things that didn't work but many that did - Chlor-Oxygen is probably the easiest to get but the lozenges are online as is folic acid liquid. Chlor-Oxygen is chlorophyllin. Works for me, good luck to all and hope it might work for you. But beware of the green!|
|Ann 26 February 12|
|Hi.... I'm Sharon and I have had lichen planus in my gum for a year. and I want to know 2 things: 1. If it goes worse after yers? 2. What is the reel risk that erosive lichen planus will lead to oral cancer (the total risk and for erosive)|
|Sharon 22 February 12|
|hi everyone marie b here as im not keen on veg 2 get my goodness i have been cooking and blending carrot kale sprouts broc spinach leeks butternut qaush with veg stock a good pot last 3 days know it sounds yuk but it is nice and you are getting all your vits in one go get my biopsy march 5 really nervous good luck all with soup marie b 14 2 12 |
|marie b 14 2 12 14 February 12|
|Thank you Liz, I appreciate what you've written here. Good luck to you & all oral LP sufferers.|
|Anna 12 February 12|
I am sure you must be scared of all this unusual info given, if it was me I would stick to tried and tested remedies from other OLP suferers on this site, I get annoyed when people ie doctors give this info scaring folk like yourself as if "oh just go ahead and do as we say" and you end up miserable worse than ever, okay for them to say that but the OLP patient is the recipient of the pain, for myself I get better results from Betnesol from my doctor who really understands, this is a steroid mouth wash - you just rinse, spit out, it really is effective and helps along with the diet of course, the citrus, a no no for most of us and the mouth hygien ie tongue brushing, toothpaste a must without Sodium Laurl Sulphate, go on site and choose one there are lots which help and keep looking on the site for the best info as most docs are not sufferers - we are!
Best of luck.
|Liz 10 February 12|
|I was diagnosed with oral lichen planus a month ago. This was only after my dentist, following a routine 6-month checkup, wanted me to see a dermatologist dr. to be evaluated, a dr. who was supposed expert in treating it. After looking into my mouth he told me that I do have OLP, that it is in its early stages and he prescribed a cream called Clobetasol Propionate USP, 0.05% -- although the paper that came with the cream said do not put into your mouth! I was told by the doctor that that was what I would read but that I should go ahead and apply to my gums anyway. Just to be sure, I talked to my dentist before I used it the first time and she assured me that this is indeed correct, that she had several patients who have OLP and this is what they use also on their gums. But I was instructed to massage this cream for two minutes each on both upper & lower gums daily, minus the gum area of the upper 4 teeth and the bottom 4 teeth. Now, two minutes is a long time when all you're doing is sitting there massaging the gums. The taste is not good but it doesn't make me gag either. If it will keep it from spreading, then I will do whatever I can. This is the ritual I go through at the very end of my day because once I do this, I am not to eat or drink for 30 minutes -- so I do it and then just go to bed. Yesterday I discovered what appears to be a blood blister underneath my tongue -- if that's what it is. I have an appointment next week for another dermatologist to evaluate because I know that OLP can evolve into oral cancer if left untreated -- I am not pushing any panic button at this point and will not assume that it is "a growth" that requires biopsy. Anyway, this is my experience thus far in dealing with OLP -- two months ago the name of this autoimmune disease was nowhere in my vocabulary.|
|Anna 10 February 12|
|I have just been diagnosed with OLP (still waiting for biopsy results) although have had canker sores for years so I suspect I've had it for a long time. It seems to be triggered by coffee, chocolate, wine, cakes ans sweets which fits in with other people's experience (Why is nobody doing research into the causes???) I have spent the last couple of weeks reading as much as I can about OLP and canker sores and am finding that rinsing with salt water after eating anything at all is helping a little to relieve the sores on my tongue. I read an article about some research into taking Lycopene to treat OLP. It appears there are no side effects and this is a powerful antioxident anyway so I'm giving it a go. Anybody else done this?|
|Ros 2 February 12|
I am still squeezing fresh lemons and using as a mouth wash, swallow if you wish as it is VitaminC and even though they are a bitter fruit I read on this site a long time ago lemons are not citrus but alkali. Must say my mouth is not as bad as it was.After reading Layne's input of 24 January I really sympathise as I can go back years now and think that I was as bad with my mouth in a terrible state, skin peeling off and every bit of food or drink hurting like hell , over the years and advice from others I always use SLS free toothpaste, no wine, no citrus and even cheap chocolate just triggers my mouth off along with sweets so if I do not watch then I suffer terrible. Been taking Vitamin B complex plus iron also for many months it really helps, so I contribute everything I am doing is helping.
Unfortunately when I go for a 3 month checkup my OLP is still there this past 8 years but nothing like the way it was 3 years ago when it became so bad I was referred to hospital, really I think it is a condition for life that needs care and attention to diet, boosting the immune system and try to have a less stressful lifestyle, I was hoping 2012 would bring some new treatments but do not think it will ever happen.
All the best folks.
|Beth 1 February 12|
|I have been reading everything I can get my hands on about this disease, been to the doctor with it, got three tubes of cream, one for mouth, one for skin lesions and one for my lips. I have used all faithfully but my lips hurt worse and I have lesions and even a hole in my right jaw. Personally I wish doctors would take this disease more seriously. Supposedly it is only suppose to last janywhere from a few weeks to a couple of years, well I have already had it a few years and it is only getting worse. Sorry if I sound too negative I just wish we could all find some help that didn't cost an arm and leg. Hang in everyone!|
|Janice 62-January 30,2012 31 January 12|
|i have yet 2 be diagnosed with olp but my dentist said he is certain it is olp waiting for appointment about 3mths ago i had a root canel filling this is wen it started ive since had tooth out it scared me so much at first but i stopped all citrus fruit tomatoes and spices i am takin vit b complex and fish oil capsules also trying 2 eat plenty of fish it has calmed down some and not so sore but still got the redness and marks in my mouth dont know if other people want 2 try this but worth a go cant do you any harm and is good 4 you anyway good luck|
|marie b 27 january 12 27 January 12|
|I was diagnosed back in March of 2011.....My mouth is so sore now and cheeks so swollen. They keep rubbing against my back molars and are so raw....I have all the white streaks, blisters, I have it where it gets so bad the skin comes off of my gums and I end up with them bleeding and then scabbing over....it's gross! So painful that I can barely open my mouth or talk or eat....I have been doing mostly liquids for a month now and it's not getting any worse. My tongue feels too big for my mouth too and I keep biting it. I brush my teeth with Biotene toothpaste but need to read the ingredients on the tube....I have also suffered with this just as skin problems. I now have a patch on my thigh that's now looking like a burn...my hands also break out severely sometimes, and so does my one foot. I was told that it was contact dermatitis like 30 years ago....it was good to find this site and know I'm not alone in this. It's so miserable.....|
|Layne 24 January 12|
|Wow... really glad to happen upon this site. I've only recently been told I have OLP. (No biopsy yet, though will likely ask for one to be sure.) In my reading since it all started 2-3 months ago, I've started to realize I need to avoid cinnamon (hard at Christmas, time!), wine, grapes, citrus, coffee (lord help me!), and more. Hopefully that and a good non-SLS toothpaste will help alot. My case is still new/fairly mild. Hopefully all of your great advice will keep it that way! I'm gonna try to avoid the steroids as long as I can, since they help me only when I'm using them, then it comes right back... what is the point!?|
|Shelb1 27 December 11|
hope someone somewhere comes up with a cure for all of us OLP suffereres 2012. Must say for myself only problem I have at the moment is when I eat 'rubbish' ie chocolate not the real dark stuff, pineapple and biscuits, fruit scones etc, sweetie gums and toffee, all which I love but drives me crazy within an hour as the tingling starts almost immediately, even pineapple yoghurt gives me a reaction now so my New Year resolution is really to be more aware and have more determination of just what I put in my mouth!! I am still using fresh lemon juice which I find really good and cleansing with no problems at al. someone suggested it on the site and I tried it with positive results! Also found out that Persimmon fruit or KAKI which it is also called is a bad trigger for me, trying to be healthy with the fruit stuff is trial and error. Maybe I should stick to carrots and onions, turnip etc which seems to have no bad effects.
Anyway all you OLP's Happy New Year not mentioning Christmas as the binge will be too much of a temptation.
Say no more. Good luck for 2012.
|Beth 24 December 11|
|What does not make sense about this diagnosis is that it's thought to be auto-immune. If OLP was auto-immune, why would it get worse when you are stressed (read: your immune system is down)? You should actually experience less symptoms, atleast short term if this was true. I belive it is thought to be auto immune only due to doctors not being able to identify the right pathogen causing it, with high certainty. Probably becasue the pathogen only in some indeviduals lead to OLP. Recent studies have be pointing in the direction of viral infections, e.g. HPV. This also explains why steroids in many cases are just making the condition worse, becasue they down regulate your immune response, that lessens symptoms short term, but make the viral infection prolifirate.. To further support the argument that OLP in many cases are casued by oral HPV, is the successful treatment of OLP of the skin, genitals and lips with Imuquimod 5%, that is an imunene response stimulator. HPV infections are super common, 80-90% of people have had one or more HPV types. 10-25% have had or have persistent high-risk types (16, 18). The two latter types are likely to cause cell changes, just like LP.. I think it's likely they are the same in many cases.. but, for now your doctor won't tell you this.. becasue they can't really test it yet, and there is also currently no cure for HPV. But, I would never use any immune supressor if I wasn't 100 % sure I did not have HPV. Imiquimod 5% seems to be the best current bet for treatment, but I have only read about one case where it was used inside the mouth, where it was applied by a doctor and the patient couldn't eat or drink for 4 hours. Swallowing the medicine could lead to serrious side-effects.|
As for diet, Vitamin A is associated with a lower risk of cell changes, as is vitamin B12, vitamin C, vitamin E, and beta-carotene.
|Educatedguess 19 December 11|
|Hi Scottie, Many thanks for your reply. I have felt so alone since being diagnosed with L.P. I only came across this site last night. It is incredible how many are out there suffering, in some cases more than me. I wish there were help/support groups around where we could meet up with others who could support each other. It's right what they say "A PROBLEM SHARED IS A PROBLEM HALVED". I'm afraid I can't eat porridge any more because even the oat particles make my mouth sore. So I mainly have weetabix with warm milk and a little honey instead of using artificial sweeteners. As my dentist tells me , it's just a case of trial and error. I definately think that there should be more research into this sometimes debilitating condition. I mean , we have to eat don't we but when your mouth is so painful its sometimes impossible. When I was first referred to my local N.H.S.Hospital for investigations into my condition the waiting list was so long that I paid to be seen privately. When I spoke to someone cocerning my N.H.S. referral they told me that the Consultent had seen my referral but did not deem it as urgent as it was "only" Lichen Planus!!!! It is just as well that I had the funds to be seen privately , but many people cannot afford it. Anyway enough of my rants, todays been a good day . Every good wish sent to those who are suffering.|
|Tina 7 December 11|
|Hi there Tina|
Ifeel your pain but re the fillings, I hd all mine removed and replaced without any difference, not to say it will not work for you but I spent a fortune and many a sore mouth from dental work without any change, for myself it only can be an immune disorder like a lot of OLP sufferers. Keeping as healthy as can be is my solution and I benefit from no citrus stuff except my above message re lemons which are supposed to be an alkali fruit, oranges drive me mad along with grapes, wine etc, the list is endless, even chocolate triggers my OLP so much so that the skin in inner cheeks actually sloughs off leaving mouth almost raw but then it heals quickly only for something else to set of an allergic reaction. Porridge in the morning for me is helpful, I am sure you know all this but hope your OLP gets better.
Best of luck
|Scottie 7 December 11|
|Hello fellow sufferers, I have been suffering with lichen planus for over 2 years. I have tried various ways of boosting my immune system, such as taking vit.c, zinc etc. to no avail it seems. I use Difflam oral rinse and spray which are temporary relief by numbing the pain. I visit my dentist and hygienist 3/6 monthly. This condition is so frustrating. I may be o.k. for weeks then have a flare-up where my gums are on fire. Other people don't understand about how painful it gets. They seem to think that its just spicy food that is the problem but other L.P. sufferers know that it is far more than that. As others have stated on this site, it has to do with this consistancy of food. I can only eat cereal for example if I pour hot milk over to make like baby food! My dentist told me when I was first diagnosed that it would get a lot worse before it gets better! But at least he did give me some hope that it would get better. He also advised me to change all my fillings as in some cases it has helped. I was a bit dubious as to whether thi would be of any benifit and of course the cost involved. I am now considering this option and blow the cost , if it works then it will be worth it.|
|Tina Shaddick 7 December 11|
Seems a bit harsh but I read on one of the inputs to try fresh lemon, (not the bottled stuff) I did it faithfully, it did sting the first few times but I think perhaps it has worked as my OLP is fine at the moment (4 weeks now) I did persevere as it was really stingy but hopefully it has worked, will let the site know if there is a change.
|Scottie 15 November 11|
|Hello All, |
After many times that I had mouth pain, my doctor thought I had allergies, so she gave me allergy pills. But unfortunately it did not stop the pain and sourness.
I started having these symptoms since last year after I took some antibiotics. The doctor told me at the time that it will go away, and I have nothing to worry about. But it never went away, it just got worse with time. I was really in shock when I got ulcers on the side of my tongue and also itching on the roof of my mouth, and red flamed gums. (at first i thought it was cancer, but found it very strange, because I don't smoke and drink only on special occasions, plus I go to the dentist for clean up every 6 months, and brush 2 to 3 times a day)
So after it got bad with my tongue, i went back to the doctor. She then told me that she thinks it is Oral Lichen Planus. And that only 1 percent of people world wide get this disease. I was asking her if I did not have oral cancer, she says no trust me I saw oral cancer before and I am pretty sure it is oral lichen planus. the 18 th of November i will go to a dermatologist to make an biopsy to verify this.
I am very frustrated about this news. Especially knowing that it is not curable. :-( All I want and need to know now is what to do so it won't get worse. Some days I am in pain and some days I am fine.
I would like to know what to eat? Or what not to eat! I don't eat spicy foods anymore, nor do I drink alcohol anymore at a party. I noticed it helped a bit. But what about healthy but acidy foods? Like Orange juice or lemon?
I am happy I found a forum, where we can support and help each other out!
|Charlotte 8 November 11|
My 3 year OLP has just flared up again after several months clear.
The sides of my mouth are also splitting and after trying cold sore lotion unsuccessfully, the chemist said it looked like a vitamin B difficiency. Vit B has helped a bit but I noticed that it has had more effect on my OLP. I noticed that Scottie mentions it too, so worth a try. I will try some of the products mentioned on this site too.
|Heather2 5 November 11|
|Elaine, interesting to hear about the "mouth rinse" technique - I will convey your sentiments to Doc Squigle.|
|Dom Walton 29 September 11|
|Dr. Cutler, I want to thank you for making the formula for Squigle Toothpaste. It doesn't burn or even tingle my horrible OLP mouth. I also disolve about 3/4" of the paste in an ounce of water and use it as a mouth rinse. All other rinses set my mouth on fire. I am so grateful to you.|
|Elaine 28 September 11|
|I've had OLP for about a year, just came up at some point (had a lot of stress in my life at the time and dental work) and hasn't gone away. i dont think ive got it as bad as some people on here from what i'm reading. Ive been doing my research, and if this is an autoimmune problem like a lot of Doctors suggest then ive also looked into that.|
There seems to be a lot of bad information flying about around autoimmune problems, the main one being to 'suppress it'. You see the thing is, if your immune system has a problem, its not that its out of control and wild its that its having to cope with something it can't cope with! What it actually needs is help, not suppressing. Ive read several sites for other autoimmune problems that quite clearly state that the human body has a natural defence mechanism and when this mechanism is out of control it attacks the good cells as well as bad and this is when you get inflammation.
Now to help this system out and 'reset' your immune system you needs much bigger doses of vitamins than you would otherwise need on a regular daily basis. Think about it, if you only need 100mg of Vitamin c for example to keep healthy, you are going to need a lot more if you immune system isnt working properly. not only have you got to supply the normal amount but you also need to supply extra to help the fight (be it inflammation, cold etc) and OLP is nothing more than your immune system trying to fight off something it doesnt agree with, be that allergies (of any kind) or infection.
So a two fold approach is needed. First you need to start taking Vitamin C, Vitamin E and Zinc, and you need doses of 1000mg of C, E and at least 30mg of Zinc each and every day. Secondly, you need to fight the infection from the outside and thats brushing twice a day and an oral mouthwash, but avoid any mouthwash that contains alcohol. A lot of mouthwashes now come in "Alcohol Free' versions and this is a must.
You need to solve the root cause of OLP not the condition. A lot of people on here have said they were run down, stressed out when they got OLP and i was no different, this is why the immune system needs all the help it can get and it needs big doses every day for at least a month.
since i have been taking this my olp has reduced a lot, is no longer sore and i continue to help my immune system as much as possible. Im not expecting it to go away in a month considering i have had it nearly 2 years.
Do some research into what im saying here, find the links between autoimmune conditions, its effects on the body and the need for a massive boost in the way of vitamins. If you have a sore mouth and find it hard to eat then that alone contributes to not getting enough of the right nutrients your body needs and only makes the situation worse.
|Andy 20 September 11|
|Hi all.....I've had this for about half a year now after having oral surgery for wisdom teeth. Fortuneatley, I don't have it as bad as most of you. But, it still sucks. I've tried most things so far, with no success. Steroids of several varieties, shots, ointments. The only thing that helps is Campho Phenique. It takes care of the pain, but only for about 10 minutes, then needs to be reapplied. I go thru gallons. Also, I tried a home remedy of honey and cinimon oil and....I think it actually helps a bit. I have another appointment with the dermatologist in a couple weeks, and I will push for Rods Prototopic stuff. Thanks for posting that Rod. Good luck to all.|
|Greg 11 September 11|
Reading Tam's input re his OLP, I think all the stuff he is eating in contributing to him getting more ulcers as for some of us (big time) is pecan nuts or any nuts and crisps, bananas, sultanas are really just dried grapes and a no no for OLP sufferers as are fresh grapes and wine and citrus fruits also, Tam maybe if you just try to eliminate one of the things you love to eat or drink (one day at a time ) and if you are lucky Tam you just might find the trigger that gives you OLP ulcers, all down to trial and error if your problem is regarding your diet as that is the cause for some of us. Reading other folk's input it is other health problems but diet is always worth checking out. Clear spirits does not bother me at all just white wine and red wine which of course is made with grapes!!! Remember toothpaste without Sodium Laurl Sulphate is a must!
Best wishes. let us all know how you get on.
|Beth 6 September 11|
|I have had OLP for many years but was only recently diagnosed. The pain on my gums is really intense at times. I was prescribed Protopic by an oral surgeon which seems to help if I use it twice a day on the sores. Also, before I knew that I had OLP, I found that drinking Kombucha relieved the pain and severity of the ulcers a bit.|
|Kristen 22 August 11|
|I was diagnosed three months after having my braces removed in December. Im 39, I had a painful time with the braces but I thought it was just normal seems my lesions are where the braces mostly irritated. Have been with a natropath for four months and 50mg of prednisolone currently down to 12.5mg (ulcers coming back in force now). Detoxed for 8 weeks with a few slips ups (im human) and still eating mostly well . Spraying preventer on cheeks which might be helping, its very hard to know. Would like to get off pred as the lack of sleep and erractic behaviour isnt great, but it helped so what to do...I dont eat tomatoes, capsicum acidy foods. But I do eat lots of pecans, sultanas, apples, bananas, most veges, fish and chicken, beef and roast pork occasionaly, Helgas bread, spelt flour apple banana pecan and maple syrup muffins (natropath recipe), mostly stopped the alcohol and cut down on coffee and tea (probably not enough though). Im dwindling on the natropath side of things very costly and the doctor and dermotologist suggest a good nights sleep and good diet would be better than the supplements she gave me but again it hard to know. Pred didnt make me gain weight except for the guinea pig face. I have had a gland on the side of my neck irritate for over year but doctor said nothing to worry about noticed that others have this too. I use Biotene toothpaste. Any suggestions? do other people assess everything they eat too or am I wasting my time.|
|Tam 15 August 11 15 August 11|
OMG it does not seem to be any relief at times from OLP. I was given Daktarin Gel for mouth infections from doctor which healed up my mouth in 2 days, it makes one wonder just what is the cause for some of us, as OLP ulcers just became so sore. I hope you get more relief from your treatment. I Went to Holland Barrat and bought Tea Tree Oil toothpaste which contains no additives whatsoever as other which are free from SLS still have other chemicals in them. Pleasant to use and must say OLP is a bit more settled, still getting problems when eating citrus fruits though or fizzy drinks, boiling sweets etc but all down to will power. I can almost be healed overnight by watching diet but there are times even then OLP flares up for no reason at all. To say it drives me nuts is an understatement as it just seems to control your life. Maybe the above post 12 August ApprovaMyday might get some info from the OLP site.
|Beth 13 August 11|
|Hey all... hope you are all holding up ok... currently going for 3 weekly interlesional injections, but was told last month that they can't give them long term as it may cause atrophy of the cheeck tissue, which will in turn slow down the healing process rather then help it... was a bit taken aback as the injections seem to be the only thingcontrolling the ulceration. Only one hole left in my left cheeck, which does not seem to want to close up.. on 8mg of prednisolone alternate days still (which beats 80mg per day, so guess I cant complain about that one) and putting dermovate on every morning and every evening.. the pain is totally managable at the moment and other than the one hole in my cheeck this is the best I've been in 2.5 years .. fingers crossed this last bout of shots will make my cheeck heal over and it can be controlled by dermovate cream and prednisolone .. cant remember what it feels like to have a mouth without any ulcers :) - unfortunately my other auto immune condition (hidradenitis suppurativa) is rearing it's ugly head again so here's to hoping that will settle down too|
|Mizzy Wonder 1 August 11|
|I was diagnosed last year with LP and to say the least, I have been miserable. BUT, I have found help….Canker-X for canker sores. I spread it inside my mouth and get temporary relief and, it also makes it go away for a few days. This has worked so much better than any RX I was given. Good luck, this has been a miracle product for me.|
|Gigi 31 July 11|
|Just a suggestion re above message, could this be a fungal infection or thrush along with your OLP, if so there is a gel called Daktarin which is for fungal and bacteria infections of the mouth and throat. I have had OLP for more than 10 years and had it really bad but it is canker ulcers on both inside cheeks with the white markings. this sounds like you need a doctors advice.|
|Beth 7 July 11|
|I started getting mouth ulcers about 9month ago, and recently been diagnosed with olp and noticed the white legions have started to spread round my mouth and most recently on my tongue, which had gone a strange shape, I have no ulcers at the mo, but my mouth is very sore, and hope the white legions stop speading around my mouth soon.|
jane. 6 july 11
|jane 6 July 11|
|i have been doing eveything to help my immune system i dont cut out healthy fruits and veggies i refuse to. i blend them into juice and drink with a straw i drink everything with a straw just make sure you position it to the back of your tounge to keep from spilling off into your mouth. elimating healthy foods will only weaken your immune system . exersize and diet work wonders for me, i also have been drinking rosemary tea and also use it cold to swish in mouth all this works for me and of course i dont eat any spicy foods. havent had to use steriods in a long time|
|carla 17 June 11|
|I am so glad to have found this web site. It feels so good to know I am not alone although I wish NONE of us had to suffer from this horrendous condition.|
|Lorna 14 June 11|
|I am suffering from oral lichen planus & taking the treatment from last 4 years from RML hospital ,New Delhi(India).Earlier the doctors from ENT department prescribed me the treatment of fungal Infection.Later they refer erred me to skin department.Since then i am applying locally on my tongue of Retino A .05% .I have got some relief applying the retino and i am continously applying this ointment.But now my gums & cheeks became eroded now this is threatening to my life .Kindly advise me what should i do. some doctors are advising for oral biopsy same time others are saying that we have no treatment of this now.I have also used Kenacort oral paste with vit C|
|Rakesh Kumar singh 12 June 11|
|I have had the skin type of lichens planus for 14 years. Thankfully I only had a severe outbreak during the first year. However, about 5 weeks ago I started getting sores in my mouth, swollen tongue and cheeks. Also everything I eat or drink seems to taste like salt. Anyone else have this symptom? I am also under severe and unrelenting stress. Nothing I can do about this at the present time. I am miserable. I hope this passes soon.......|
|Lorna 11 June 11|
|I have had OLP for 15 years. This is the 2nd bad spell I have had since Jan. and constant 10 to 30 ulcers in my mouth, tongue, throat, cheek. My eye even turns red also. I have had an endoscopy, biopsy, allergy test. Tried several doctors and they blow it off as "Yes you have ulcers - no cure". I keep a chlorseptic mouth spray (for sore throats) with me at all times so I can speak and eat. I panic if I don't have my spray. This really sucks and no doctor knows anything. It took me to figure out I have OLP by looking on the internet. I am now taking Olive Root and probiotics - I don't think it is helping. Wish there was a study group to get with people to compare what we eat, medicines we take etc so hopefully we could figure out what causes this and how to treat, cure or at nothing best - relieve the pain. I am 50 years old. Anyone know a support group or study group for this?|
|Mel in pain 9 June 11|
|Sorry all re above message,|
Do not know what happened to my spelling today so will blame it on my mouth being so very very sore along with a swollen jaw and of course not concentrating enough!
|Scottie 3 June 11|
|Yes Mizzie all of 10 years and more, some folk on this site even longer, it seems there is no cure at the moment.|
Last night I had a sore jaw and my inner chhek was swollen and so sore, today I have no a painful lump like an egg at the right side of my jaw which usually is a blocked gland and for me the cause is usually when my ulcers get really bad, usually withing a day or two it goes back to normal, it seems one thing triggers of the other, anyway other non sufferers cannot understand unless they experience the pain of bad ulcers and at least on this site others are just as bad, some worse than I am so I just keep hoping for the miracle cure.
all the best.
|Scottie 3 June 11|
|@Scottie.. god.. 10 yrs! I am seriously hoping mine will be loooooooooong gone by then :L... funny how betnesol works for you and had absolutely no effect on mine isnt it? I have just been back for another interlesion injection and it usually takes a week for this to take effect.... along with the oral steroids (yes I have gaines 3 stone... and looked like a hamster for quite sometime.. but now that the dose is severely reduced, I have lost 1.5 stone and my face looks like my own again... I am attending Weight Watchers to lose the rest)... and the topical ointment things are at least bearable and I feel like a human being again. I was very sceptical about longerm use of prednisolone, but I have to say that before the steroids, I was in so much pain that I did not want to get up out of bed anymore, where now my condition is beareable, I can eat normal and am functioning like a human being.. so negative side effects aside (had bone scans etc to monitor osteoporosis and am on stomach tablets etc...) It really has made my life worth living again. (although I hope ofcourse that the docs will be able to get this under control so I can get OFF them!)... @Lynn.. I reckon doctors take it seriously but do not know enough about the condition to know how to treat it effectively. My dentist referred me to the Oral Medicine dept in the dental hospital, and only there have they been able to treat my condition with some effect ...so don't give up and do lots of research on who has experience in treating this where you are!! @Rod.. unfortunately steroids alone, ointment alone and injections alone has not done the job for me.. I am so very pleased for your wife that the topical ointment keeps the condition under control.. I am on steroids for 2 years + now... and only a combination of all the different treatment options is keeping this under some sort of control (but not to the extend where all my lesions have healed up yet...)... at this stage the disadvantages of the side effects of longterm steroid use far outweigh the pain and misery I suffer when I dont take them.... The fact that I am able to eat a normal meal and brush my teeth without being in total agony is SO WORTH IT :)... I have in the last two weeks given up smoking (again) and am on a healthy diet and determined to beat this thing once and for all (gotta keep up that positive attitude LOL)... wishing all you OLP sufferers out there the strenght to stay positive and hope you will all be painfree soon :) x|
|mizzy wonder 30 May 11|
Please note that we are unable to remember the steroids which were prescribed by my wife's consultant oral and maxillofacial surgeon. They were prescribed only for a two week period (as a respite) and could not be prescribed for continuous use owing to long term side-effects. Once the two week course of steroids had ended, the painful ulcers were then to re-appear within days prior to my wife's next arranged visit to the hospital. HOWEVER the surgeon then prescribed the MAGIC ointment and within days, ALL mouth ulcers had disappeared. Life is truly wonderful again.
|Rod 23 May 11|
|I've had OLP for a yr. and a half, my tongue is very very sore. After reading all these messages I'll check with my dr. tomorrow and see what she can prescribe. I had a biopsy done last yr. that alone was miserable! The OLP is causing great stress and very depressing. I don't think drs. take this seriously.|
|Lynn may 21 23 May 11|
|Your OLP is similar to mine Mizzy erozive so much that inside cheeks feel like sandpaper after about 10 years of same. I am always looking on the site to see if I find anything I have not tried but Betnesol helps me deal with the rawness and pain as I use it 4 times daily after meals and brushing. My doctor does not give Presnisidone because of side effects ie can weight gain as it is such an ongoing condition but I appreciate at times I would have taken anything my mouth was so sore. My willpower goes at times and I eat things I should not and OMG do I suffer, but I have given up wine which I found to be a bad trigger along with grapes and anything really that ends with 'berry'.|
I suppose we just all need to hope for some person to find a cure.
Good luck all OLP sufferers.
|Scottie 21 May 11|
|OLP is an Auto immune condition.. for many different ppl it has many different triggers and like that.. what works for one person, in terms of treating it, may not work for another. I have Errosive Lichen Planus for over two years now. I have been on many different immune suppressors (still on prednisolone steroids, the other immune suppressors caused my liver to stop working.. so did not work for me), have used betnesol 6 times a day (this did nothing) and I am currently getting monthly inerlesional steroid injections into my cheeks right underneath the ulcerated areas in my cheeks.. in addition to this I also use a steroid ointment (developed for the skin type lichen planus, not meant to be taken orally.. but hey) called Dermovate. I have been on sterioids for over two years now and the dose is gradually decreased each monht... most of my lesions have healed up, but there are two spots that just will not heal and remain painful.. so while I am thankfully no longer at the stage where I could not speak, eat, brush my teeth or go a day without my cheeks bleeding, I am still not 'cured' :( .. I find that allergic reactions to some foods (tomatoes, bananas) and medication (anti inflammatory drugs mainly) aggrevate the condition, so needless to say those things are cut out of the diet... I have however not found a 'cure' yet and find that in times of tiredness or stress it can also affect other areas (such as my intestinal tract and stomach, which also develop ulcers then)... I can only hope that continuation of topical ointment, prednisolone and steroid injections will eventually heal the last ulcers and that I will get this damn condition under control...|
|mizzy wonder 20 May 11|
Can you tell me the exact name and dosage of the steroid your wife used. I took these messages to my doctor yesterday for his approval. I also highlighted the last one about the Protopic ointment. I have had OLP for years, but only recently has it gotten almost unbearable. I've tried steroid injections in my mouth, but that has become too painful. I now live on aspirin & lidocaine ointment.
|Roy 20 May 11|
|FOR GOODNESS SAKE - ALL LP SUFFERERS PLEASE READ THIS !|
I am amazed that nobody has grasped the significance of my feedback above dated 11th April 2011.
I strongly suggest that you immediately see your doctor and discuss the use of "Protopic ointment 0.03%" (Tacrolimus Monohydrate) manufactured by Astellas Pharma. This ointment has been prescribed by our local consultant oral and maxillofacial surgeon. My wife rubs a very small amount of this protopic ointment onto the inside of her cheeks (now twice a day) and miraculously is left with a mouth completely free of ulcers. Her life is now completely back to normal. I really cannot over-emphasise the difference this wonderful prescription has made.
|Rod 13 May 11|
|Oh we feel your pain Carol - OMG your OLP sounds so very painful at the moment, try some of the remedies on this page, it helps, sometimes just even the distraction to try other remedies. I am still using Betnesol steroid tablet that you swish around the mouth and spit out, (I live in Scotland anf maybe the steroid you use has a different name?)must say my mouth is a little better for doing this 4 times daily as I was just using Betnesol when required and when I spoke to doctor he said to use it for a month 4 times daily and must say the so very painful rawness has gone. I still am a bit careful of citrus stuff and have been taking iron and Vitamin B complex so all the stuff I am doing is helping hopefully. I also am tongue brushing at night. Sometimes I read on the site that someone has found the ultimate cure only to read later they are back on site just as bad as ever so it just seems a recurring problem all the time with most of us. I also am using Saraken toothpaste from Holland and Barrat but Squiggle and Sensodyne for me are all good, hope you get a little better soon as it really is a terrible pain when the ulcers just flare up.|
Best of luck, hope your mouth gets better.
|Scottie 12 May 11|
|After reading this page, I am more depressed than ever! I have been suffering from very painful OLP since last October, and just went through with a biopsy to confirm the diagnosis. I have had OLP for years, but it was NEVER like this. My dentist would say, "You must be stressed out! Your LP is really bad." Those days I didn't even realize that I had it. But of late, it's been awful. I've been on viral antibiotics for 4 rounds now, an oral steroid swish, the Lidocaine numbing concoction, another fungal tablet that you dissolve in your mouth, L-Lysine and several over the counter medicines. The blisters, sores and pain still are there. The first 3 rounds on the antibiotic seemed to work, but this time NO. I am getting seriously depressed. Some of you have been dealing with this a lot longer than me. Like Cherylg said, why hasn't a cure been found? I think my family physician thinks I'm just overreacting, but it hurts to eat, drink, even smile. I have an appointment with a dermatologist the end of the month, but I'd sure like some relief before that. I will try the special toothpastes and the 'dukes magic mouth wash' if I can find them.|
|Carol May 11 11 May 11|
|heather i had also the exact same symptoms for 8 months the drs were stunned at the severity of sores in mouth and mine was really bad on the lips like you have they have actually scarred my face they were so bad. mine finaly burned out but has recently started to come back. using straight vasaline to kill bacteria , nystatine cream on the sores. and lysine and vitamin c tablets, will help alot.|
|mike 7 May 11|
|I have had Lichen Planus on my bottom lip now for 6 months, in the beginning months it was in my mouth on my tongue and affecting my gums, it began with what looked lip a cold sore, it got worse my lip became huge with sores almost like shingles all along the lip and the pain and it would tingle all along the lip kept me awake, and I could hardly eat. Now six months later with numerous doctor and visits to dermatologist (including being taken to a clinic where I was viewed by over 20 other dermatologists, after a biopsy LP was confirmed. Steroids do not seem to work, the sores fall off and new ones reappear causing my lip scars. I cannot drink out of a cup and use straws. Would dearly love to hear from someone that has had it on the lip. I find that somedays I look so bad I cannot bear to go out.|
|heather 5 May 11 5 May 11|
|To "the tooth fairy" and anyone else that this may help. I have oral lichen planus. It was diagnosed with a biopsy. I went to a dermatologist just last week and he has me using the "dukes magic mouth wash" which consists of nystat/dexameth/hydramin. swish for as long as possible even hold it in your mouth then spit. this has given me very good results. since there is no cure for LP and it can come and go at will the best advice I could give is to see a dermatologist. My regular dentist had never seen LP and refered me to an Oral and maxillofacial surgeon who did the biopsy. There are several things they can try you just need to find the best remedy specifically for you. But dont give up. Steroids do wonders but you cant have them all the time. Honestly i had never heard of this until I got it and just cant imagine that with as many people who are affected they have not found the actual cause of it or a solid remedy. |
Hayesy go see a dermatologist!!! thats crazy to deal with what you describe!
|cherylg 3 May 11|
I wonder if anyone can tell me what this is. I started with canker sores and hugely swollen lips and glands, the doctor didnt seem too interested said it was viral and gave me anti herpes drugs. A week on the swelling has gone but i have thich white skin all over the indides of my mouth and spreading out onto my lips. This thick skin makes it hard to move my mouth and my lips look horrendous. Every night if my lips touch i wake up with them totally glued together with this skin stuff and i have to physical rip them apart to open my mouth which causes my lips to bleed and be even more sore. I am at my wits end with this
|hayesy 2 May 11|
This is a great website for finding out different ways of controlling oral lichen planus! I am a student dental therapist (a hybrid of a hygienist and dentist - very few people know!) and have a patient with oral lichen planus and advanced periodontal disease. I was cleaning his teeth over several visits and gave him an electric toothbrush which really made a difference to the plaque levels in his mouth. Now after a few weeks of not seeing him, he came in and has had a flare up and was unable to brush his teeth at all. It was even too sensitive for me to scale his top teeth so I just did the bottom but there was alot of plaque build up. He is on medication which, after a bit of research, I think could have triggered it but i'll have to ask and he obviously can't come off the medication. Does anyone have any suggestions? I'm going to see if he'll try the squiggle toothpaste, but he'll have to get it himself unfourtunatly. I'm also going to get him to do a diet diary so I can see if he has much artificial sugars and acidic foods.
|The Tooth Fairy 29 April 11|
|Hi there |
re a spelling mistake 24 April I meant to type Canker ulcer sore - and not 'cancer' sore, need to check my typing!
|Scottie 24 April 11|
i was told by doctor and dentist that Oral Lichen Planus can be allergy related as I think mine is. I also have had biopsy which was worrying at the time but came back clear. I have tried elimination as you have tried but there are foods with so many additives that sometimes my inner mouth is perfect and overnight flares up so for me it is something coming in contact witht he sensitive cheek areas. I try to intrdouce foods like tomatoes, boiling sweets, chocolate,grapes, and citrus fruits, nuts, wine, biscuits only to suffer next day so I need to keep trying. I have been using Sensodyne blue Gel the one free of SLS but have found SARAKEN from Holland/Barrats which I think is even better as it says it is completely natural, it also is refreshing and it cleans my teeth.Last night my mouth became a bit swollen and I accidentally bit one of my inner cheeks during the night, it woke me up I bit so hard, today it is just a huge cancer sore now, honestly it never ends. I have also been taking iron and Vitamin B complex and do have more energy but I also have been told by doctor that immune system can be the cause. OMG it never ends! If your doctor can give you Betnesol tablets they do help a lot and clear up the ulcers quickly but it does not stop what is causing them.
|Scottie 24 April 11|
|i have had oral lp for 14 years now,doctors dont know what causes it so they cant find a cure.all they can do is give medication that helps.the main donts are no alcohol,no spices,no chocolate,no citrus fruits.along with a few others.the best toothpaste i have found is colgate herbal (found it in spain)i have had two biopsies one tongue and one cheek so far.the hospital doctors are starting now to think it is caused by your own immume system.they believe that it can go as quickly as it came,so i just keep hoping.|
|jen 22 April 11|
ALL LP SUFFERERS PLEASE READ THIS !!
My wife had been suffering from serious erosive LP for five long months. The mouth/tongue ulcers were so bad, she could eat only warm soups, crushed milky Weetabix and warm rice puddings. During this time, her weight plummeted by three stone. During this five months of sheer hell, her doctor prescribed Hydrocortisone 2.5mg muco-adhesive buccal tables, Betnesol 500 micrograms and Difflam Spray.
Upon waking up in the morning and attempting to speak, her ulcers would "open up" and become increasingly painful as the day progressed. She was unable to brush her teeth without experiencing considerable bleeding/pain and also developed oral thrush which had to be eliminated with antibiotics. Finally, after five months without respite, she was referred to a local consultant oral and maxillofacial surgeon.
Upon visiting the hospital, her problem was deemed so severe, she was immediately provided with a two week supply of steroids. She was advised at this point, that the steroids could not be taken indefinitely. Within two days of this steroid treatment, her ulcers had completely disappeared and she was without pain for the first time in five months. After two weeks, upon her follow-up visit to the consultant, she was then prescribed with "Protopic 0.03%" Tacrolimus monohydrate 30g and was asked to gently rub this into her inner cheeks twice a day. (Morning and night).
Within five days of applying Protopic ointment, all ulcers had disappeared and once again, she was completely free of pain. Although I believe there are considerable clinical trials taking place with this product, it has yet to be approved by NICE for oral purposes. However, the consultant is happy for the ointment to be applied indefinitely. The news gets even better as there has been a further improvement still. After only five weeks, my wife has now found the need to apply the gel only once every night before going to bed. It has been suggested by the consultant that she can attempt to reduce this application even further as the weeks go by.
The same consultant surgeon has also recommended she uses "Kingfisher" toothpaste which is devoid of alcohol.
This toothpaste can be found in most health shops.
Needless to say, my wife is delighted with the outcome and our lives are now very much back to normal.
|Rod 11 April 11|
|Hi there Ben|
Doctor told me that most biopsies are non cancerous but they do the biopsy just to make sure. I myself was very worried also but biopsy came back fine, try the usual remedies that others try on this site and if doctor has not sent you for biopsy then also toothpaste without chemicals (Squiggle or others listed) and eliminate things that your mouth reacts to ie citrus fruits, alcohol, certain spicy foods, sweets and maybe you can find out what is triggering off uclers and like the person says on 11 March maybe you are a bit run down. I also got Betsenol oral tablets from doctor (steroid) that you dissolve and swish around your mouth, do not swallow - they work so well for me so they are also worth a try.
Best of luck
|Scottie 30 March 11|
|I have just discovered this site. Have had OLP for 2.5 years now. Have finally found Squigle Tooth builder paste, no flavours, as I too find peppermint and the like burns. Cannot use Gengigel as some of you can, or any mouthwash except weak saline solution. Been treated soluble prednisoloe and spray steroids but it has taken a course of high dose systemic steroids to dampen down inflammation quite a bit. Had biopsy to confirm not cancerous. It is not a viral condition, but an auto immune one, so it will get worse if you are run down or suffering from anything else which compromises your immune system even very short term. Am now suffering with folic acid deficiency through poor diet (folic acid is in all the things I cannot eat!) so on supplements for that. Hey ho, onwards and upwards mes braves!|
|Al 29 March 11|
I went the doctors yesterday and o have a White patch either side of my Tongue
The doctor said it could be this condition I'm worried if it turns
Cancerous doctor said to go back in a months time any help anyone??
|Ben 27 March 11|
|Hi there 14 March |
Is Lichen Planus (Oral) the same as Lichenoid Reaction which I have. I do not have the rash elswhere like some Lichen Planus sufferers do on their body, arms, legs etc., the painful raw ulcer rash is just in my mouth and is also allergy related to citrus fruits, wine, some alcohol, sweetie gums, colours in sweets, vinegar, in fact anything ending in 'berry' strawberries or grapes are a bad trigger also. I really can control mine most of the time when avoiding the above but bolognese and tomato based foods is also a no-no! My inner cheeks can swell up like a puffa fish in a couple of hours almost taking the skin of my inner cheeks, but can almost heal overnight after teeth and tongue brushing so really I am my own worst enemy. I do try most of the time but when I lapse then I suffer. I have stopped using remedies over the counter as for me nothing works except stop eating or drinking the above mentioned. I use Sodium Laurl Sulphate free toothpaste as it really does help. Still trying for complete self control. A diet of water and rice comes to mind!!
|Scottie 17 March 11|
|Barbara, Having just been diagnosed with Linchen Planus oral, I know now that Citrus fruits, and especially wine does make it worse. You definitely need a toothpaste without harsh ingredients. Cool plain yoghurt seems to help as it cools the skin inside your mouth. Sunshine seems to help as well. I think a lot of it is allergy related and will check our whether my BP medication is effecting it. I can't understand why more research isn't being done if there are thousands of people with it in the UK. There has to be an answer to it.|
|Barara 14 March 11|
|Chris, the Natural Dentist is a toothpaste & mouthwash found at Whole Foods? Also where do you find the Antomidine? I have never heard of this. At this time I can hardly talk. My checks gums & tongue all burn and if my teeth hit the ulcers on my tounge I go through the roof. I am having a hard time staying positive over this and after fighting this for 15 years, I must say I am getting worried.|
|Nancy 13 March 11|
|Hi there. I'm a physicial and been suffering from OLP for about four months. I want to try a 1% solution of tacrolimus as an oral rinse. So far I have not been successful in sourcing this. Clinical trials on it are very encurraging. Any suggestions please?|
Andrew March 12th 2011
|Andrew Rynne 12 March 11|
|Hi All, Just came across your site and am also a sufferer of Lichen Planus. I use a Sodium Laurel Sulphate Free toothpaste also (this is a must do!!) -- Natural Dentist (bought at Whole Foods) - they also make a great mouth wash that is wonderful. I've also just started rinsing with Antomidine (I found some great articles about it online) -- which is Iodine detoxified in Alchohol -- and it's amazing. I put a few drops in water and swish around my mouth. It has immediately helped alleviate the pain and is making the ulcers go away. It helps kill the bacteria in your mouth - which is essential and the key to keeping your mouth healthier. I hope this helps some of you out there.|
|Chris 4 March 11|
|Nancy if you are willing to try anything then read my note from Nov. 10 th and then on Dec. 10th and give it a try. This is Feb. 20th and I do not have the first lesion on my cheek, gums, tongue, nowhere. They are completely gone and I can eat normal. Some spicy foods do still irritate but that is all. I am still off all artificial sweetners, keep my mouth very clean. Get a cleaning from the dentist every three months, floss everyday several times. So important to keep your mouth a free of bacteria as possible. I take a 1000 mg vit-c, 2 bee populis everyday. It was down my throat, in my glands, I couldn't even talk. So if you really want to get rid of olp try what I wrote about. Use truvia for your sugar. Good luck Diane|
|Diane 20 February 11|
|Thanks Scottie, I will keep an eye out for them. At this point I am willing to try almost anything.|
|Nancy 5 February 11|
I was in the pharmacy (UK) and noticed that on sale were oral tablets I used 20 years ago for mouth and throat ulcer pain, I thought they were long gone off the market. They are £2.49 (UK) for 2 tubes and are called Tyrozettes. I bought them immediately as they are antibiotic over the counter tablets, also have a numbing effect similar to a Difflam Spray. The pain from a throat ulcer was gone overnight after 3 tablets, an ulcer on my inner cheek was gone in 2 days after it drove me crazy with pain and rawness for at least a week. no doubt I will get ulcers again as lots of things are a trigger for me but when I lose the will to not eat nice things I will suffer again but have found something that at least helps recovery. Hope you can get them in USA or other countries.
|Scottie 5 February 11|
|I have been suffering for OLP since 1996. I have been to many different Doctors including the Mayo Clinic. I have an 8x11 piece of paper full of different medications that have been tried to no avail. I have lesions on the inside of my cheeks, my gums are red and sore, and I have sores on both sides of tongue and my lower gum line. At this point it hurts to talk let alone eat. There is rarely anything that I can put in my mouth that doesn't burn. Anything crispy like crackers, toast, cookies, apples hurt as do bananas & chocolate. The only way I can brush my teeth is to use a Lidocaine oral rinse to numb my mouth. I also use this before I eat most foods. My mouth is always dry and burning. I try using Biotene toothpaste and mouthwash for dry mouth. Of course, both burn my mouth while using so I again need to use the Lidocain Viscous Oral Rinse to numb. I'm at my wits end and it always seems to get worse when I get over tired & stressed. Well my mouth stresses me out every day of my life.|
|Nancy 4 February 11 5 February 11|
|Interesting, have tried most things but will give it a go. Have a cold just now and always notice ulcers come before or after a cold as if it is a warning that a virus of sorts is in your system, I suppose that is how nature works, when folk begin to feel low other stuff happens ie ulcers or sinuses flare up.|
If tee tree oil works I will let the site know. Wish me luck as I need it I feel so run down even with taking Vitamin B complex, Iron and a multi tablet.
|Scottie 25 January 11|
|Hi everyone!...As a seasoned mouth ulcer sufferer and speaking as one who has tried just about everything on the market I can honestly say that you won't go far wrong with good old tea tree oil! Just place one drop (no more as it's powerful stuff) on top of your toothpaste on the brush and brush away!. It's the most powerful healing antiseptic that I have ever found and seems to nuke the virus really well. I have had a humungous ulcer on the side of my tongue whick kept catching on my side molars but after 2 days of morning and night "nuking" the ulcer is now dead...still there but dead as dodo! and you have the added bonus of it being a natural breath freshener as well. So go for it you have nothing to lose and as long as your toothpaste is sodium laureth sulphate free it could just change your life! Give it a weeks trial and see how you go.|
|pamela kaye hoggart 23 January 11|
I have also experienced the swelling, I think it is just the glands swelling with irritation and pain, it does calm down when the ulcer heals. As you have found out you have some allergies like a lot of us so just keep eliminating and finding out what is upsetting you, I am still doing well, however had bolognese over the New year which my husband also made with too much acidic tomatoes and boy did I suffer, it does take time, but being free from a so very painful
mouth surely is worth the effort, I used to buy everything on sale from the pharmacy, some mouthwashes were so strong and almost took the skin of my inner cheeks so I have learned very quickly to try curing myself instead of
just wasting money on most products that never work for me as mine is definately allergy related like a lot of suffereres of Lichen Planus (so my doctor told me).
Be interested to hear if you get any better. Good luck.
|Scottie 7 January 11|
|Scottie thank you for your input. My cheek is even swollen right by the gum that is involved . I look like a chipmunck. This really hurts and I hate it. I ate some food last night that my husband made and the seasoning he put on it just burned my mouth. So I stopped eating. This morning underneith my tongue is bothering me. I was hoping this does not spreat and really don't want this to be on my lips. Is there anyone out there that knows if this will spread to my lips?|
|Shaun 7 January 11|
I had a biopsy did also but this is really an elimination process as most sufferers of Lichen Planus get this, it usually is nothing sinister according to the doctor or dentist but it is a way of 'just finding out' of course there are people with problems confirmed. For myself the elimination of junk food and citrus fruits, wine, coloured sweets etc does make the canker ulcers worse, cleaning your teeth at least 3 times a day with toothpaste free of Sodium Laurl Sulphate which is a big irritant for ulcers, brushing your tongue also keeps the bacteria down and see if your doctor will give you a steroid tablet called Betnesolto dissolve and swish around your mouth (no side effects) SPIT OUT....so doctor told me - my mouth is so much healed by just watching what I eat and drink, more oral hygiene of course is a big issue. In the UK we get our prescriptions very reasonable or free, I was in agony for years and now just want to help someone else by what has helped me.
|Scottie 6 January 11|
|I was diagnosed with Lichen Planus yesterday. My gum around one tooth was inflamed. I went on two different antibiotics which now have caused a yeast infection in my mouth. So now I have two things going on. Now I am on a medicine I swish in my mouth 3 times a day and swallow for the yeast problem. I have been in terrible pain for about 6 weeks. Someone said this could be caused by the flu vaccine. Has anyone head that so far. My doctor might put me on a steroid. Also is it necessary to have a biopsy if there is nothing to cure this painful situation. Also will this keep spreading in my mouth? My check is numb also. This is terrible. Anyone else have the numbness? My glands are also swollen on the same side.I don't eat cinnamon,spicy foods or fruit that is acidic. I drink coffee and diet coke. I am 61 and have never had this or this kind of pain.|
|Shaun 6 January 11|
|To manoj sharma, arun india and anyone else please read what I did on Nov. 10. I have one small area that is still there but does not hurt at all. I still do everything that I mentioned above and I am pain free and lesion free. Please try what I am doing because I am sure you will be out of pain soon. I am even back eating some of the foods that I couldn't eat before. DO NOT USE ARTIFICAL SUGARS!!!!!!! And try decaffeinated coffee and tea as that also is a culprit. KEEP THE BACTERIA DOWN IN YOUR MOUTH. Good luck.|
|Diane 21 December 10|
re above message Manoj sharma, I also had concerns re taking steroids orally but there is a tablet which is a steroid called Betsenol and you dilute 3 or 4 times per day (1 tablet, swish it around your mouth, they are so good for relief and healing, you spit out after swishing around your mouth and dentist told me there was no side effects doing this but not to swallow.
Hope this helps your question. ** Do not forget toothpaste ie Sqiggle or other brands without Sodium Laurel Sulphate. It helps a lot without toothpaste chemicals.
|Liz 15 December 10|
|HI, iam new to this site i found many people condition worse then mine so i thought to take some advice from you. I am suffering from oral lichen planus since last year .when i take some steroids it heels up quickly and my white pores also get washed off. Is it okay to take steriods regularly and if it is not what to do with this ulcer. my doc says "there is no medicine which may provide you with relief . It will stop growing whenever it will want (lichen planus) to , it can take days ,week,years or much more time . please recomment some test for me.|
i'ii hope you can cure my oral lichen planis.
|manoj sharma 15 December 10|
|I am suffering from oral lichen planus since last three months white patches on my tounge are on rise. Now Spicy food hurts very badly I am told that there is no remedy for the lichen planus only homeopathy may provide some relief so currently undergoing homeopathic treatment. reading the messages i realised that the worst for me is yet to come I sincerely hope and prey for cure from this painful desease.|
|arun India 8 December 10|
|Hi, I gave a report on Oct. 10th. I have since been back to my dentist and had my teeth cleaned. I have discovered that bacteria plays a big part of olp. It helps it to breed as such. I had lesions everywhere in my mouth including my throat. My dentist told me I had the worse case he had ever seen. So here is what I have been doing and I have one small spot that barely hurts and is almost gone. I have no pain at all now. First I cut out cinnamon, artificial sweetners except Trivia that is natural. I cut out all diet cokes and anything with art. sugars. I bought decaffeiated coffee and dec. luzianne tea bags and make my own ice tea. I have something the dentist gave me to control the bacteria 90% but still is too harse. Will try it again this week. I cut out all fruits that were acidic and especially tomatoes. I ate very soft foods for two weeks and cut out all crackers or anything that was sharp that would cut or irritate the lesions. If I cannot use what the dentist gave me it has been suggested that I get my teeth cleaned every 3 months. And I will because after the cleaning my mouth improved 75% in a couple days. I floss my teeth after every meal with these little spiral rubberized sticks and I floss once and brush my teeth morn and night. Artficial sugars are really bad. I think the worse thing along with bacteria. My dentist also suggested a water pik but I think I am fine. He just stressed how important it is to keep the bacteria down. The little green or pink sticks that are rubberized are made by gum and they are called soft picks with a storage case. I have found them at Krogers and at Publix. Walmart does not carry them. Give this all a try and see if it doesn't help. Good luck|
|Diane 17 November 10|
My friend has just been diagnosed with linchen planus and is wondering if anyone has any advice on foods that she should and should not eat. Can anyone help please?
|Nicola 9 November 10|
I also brush my tongue after cleaning my teeth and must say it helps greatly as I use inhalers for Asthma.
My dentist in UK gave me Betnesol tablets as my mouth was just not healing at all - you swish diluted tablet in a small amount of water around the mouth and I found these brilliant. In USA they are very very expensive but we in UK can get them on prescription, after a couple of weeks I had great relief and of course I swear by Sensodyne Total Blue Gel toothpaste that does not contain Sodium Laurl Sulphate (the other Sensodyne ones are not SLS free) but it tell you on the box in case you did not know. cutting out all citrus fruit has helped also but really we all have a trigger that irritates the ulcers more and finding it out is hard work and elimination.
Best of luck and less ulcers.
|Beth 29 October 10|
|I've had mouth ulcers & a sore tongue for weeks. I also had oral thrush, but that seems to have gone now--I treated that with probiotic yoghurts.|
My tongue is sore all the time & for a while I felt like something was stuck at the back of it, but that seems to be a bit better. I'm in the UK & use steroid inhalers for Asthma. I use a spacer with my inhalers & I clean my teeth after to get rid of any residue the inhalers might leave behind.
|Gillian 29 October 10|
|Hi, I just found this site today and was quite surprised at how many people have this awful disease. I had my quiet for quite awhile and then I had dry mouth from a drug I take , so I started chewing sugar free gum non stop every day to keep saliva in my mouth.I have been doing this for probably 6 months or better. Then I noticed that my olp got out of control and was at a point where I could barely eat and brushing my teeth was worse than pulling teeth. I had heard that cinnamon was not good. So I quit using cinnamon which I used everyday. Then today I went on another site and found that artificial sugars are very bad, caffeine drinks of all kinds were bad and I have found that chocolate seems to really irritate the mouth. So then a bulb lit up and I thought of all the gum (sugarfree) i chew in a day. Probably 10 sticks or more, and I drink 4 or 5 diet cokes a day. I think the culpruit may be all the artificial sugars in gum and cokes. I am going to cut both those things out which I started doing today and try and see if it helps. I may have to cut out caffeine coffee also but I want to eliminate a couple at a time to see which one makes it so bad. I am convinced it is all the gum as I was pretty good before the gum chewing. I bought cream soups to ease the pain in my mouth which I was doing but then I noticed over 1000 grams of salt and gave that up. So your damned if you do and damned if you don't. I would rather try this and maybe check into some of the perscriptions I take to see if there is anything there. I also read it was very important to have the ph checked in your mouth and also thru your urine to see if your ph needs to be balanced as this is very important. I will get back in a couple of weeks and let you all know if the sugars did the damage.Also I read that green vegetables were very good for you and try and stay away from the white ones. I certainly sympathize with all you folks as it is very painful and sometimes almost hard to talk. Good luck|
|Diane 28 October 10|
|Hello, I am also new to this site. I developed oral lichen planus a few months ago and it is getting more and more extensive and painful. I had a look on the internet to see if anything could help soothe the sores, and found a site stating that many people with this condition improved if they cut out the benzoate group of preservatives and cinnamon. Benzoates occur naturally as well in berries and other foods. You should try it for at least 6 weeks to see if it helps - see link to this patient information leaflet on following a diet free of cinnamon and benzoates:|
I have been eating a lot of tinned fruit in the past few months, and some of it may have had preservatives which are not listed, so I am going to cut that out and try this diet to see if it helps.
|Lesley 13 August 10|
|I am new to this site Found it in my on going quest to find help for this dreadful condition ORAL LICHEN PLANUS I have had the errosive type for 4 years and gone through all that BetterNoMore has descibed above and in earlier |
entries I also tried the Gelclair but it sung too much and after the 3 sachet my lesions broke out even more I think I cannot tolerate any acid at all and there is acid in the Gelclair I am about to try a high dose of Lysine Its natural the body needs it so it won't do me any harm It heals tissue builds colagen improves the immuns system, has been proven in tests to improve/prevent cold sores and shingles so it might just help Lichen Planus I do use the gengigel although my Consultant is not that keen on its use I believe my OLP was caused by high doses of antibiotics I now do not take any conventional drugs and won't unless it became a life or death choice Most drugs cause side effects No use getting rid of one thing only to get something else, perhaps a lot worse
Regards to all
|Margaret Stewart 11 August 10|
|Thank you Dom, your info site is fantastic.|
|Liz 5 July 10|
|Hello Liz, it is available from the Mouth Ulcers Shop in the UK - red button top-right of this page.|
|Dom Walton 4 July 10|
|Thank you Dr Cutler for your info, I certainly will try Squiggle toothpaste, can you tell me if it is available in UK or do I have to order online which is no bother either.|
|Liz 4 July 10|
|Dear Liz, BNM, etc.|
Please try SQUIGLE Toothpaste or TOOTH BUILDER Toothpaste. We have gotten much positive feedback from lichen planus sufferers. SQUIGLE has a mild peppermint patty flavor, and has fluoride. TOOTH BUILDER has no added flavor (tastes like marshmallows), and is fluoride free. Both are sold on this website.
Hope you get relief.
Dr. Edward Cutler,
Inventor of SQUIGLE's toothpastes
|Dr. Edward Cutler 3 July 10|
Reading your posts on Lichen Planus, my canker sores on inside cheeks do not seem so bad as described, OMG it sounds so painful. I suffer from Lichenoid reaction which is similar without the body rash and I only have bad canker ulcers on iside cheeks worse at times when I eat certain things, crisps, nuts, but seem to be under control at the moment by not eating citrus fruit, especially tomatoes, grapes, wine, strawberries etc, seem a bit unfair but there are other fruits and nice things to eat just eliminating the bad ones is better than pain, also I use Sensodyne free SLS toothpaste which helps, also Betsenol tablets from dentist or doctor and Difflam rinse is good, anything is worth a try to keep normal and sane, hope all of you have a pain free weekend.
|Liz 2 July 10|
|Wow, 3 years since I wrote about Gelclair and while at first I thought it was the miracle cure for me it was short lived!! While the Gelclair was helping with the pain I had when eating, it was not helping HEAL my gumes or the sores or the pain in between eating :((( and then within a few months of taking Gelclair my mouth sores got BIGGER AND WORSE AND THEN Gelclair started making the mouth sores burn more and cause more pain!! Mouth sores from advanced oral planus is NOT the same as any other mouth sores so that is why what helps other mouth sores does NOT help oral planus mouth sores!! And for sure I do not know why some have more pain than others? So much pain for me for so many years until I had forgotten the short relief I got helping to eat until I came across this today and remembered the short relief I got. The oral pain has NEVER gone away since I first got oral planus but has gotten worse. I have run out of things to try now :(((( But one thing I did recently come across and that is I read the heart medicine I was on for MANY MANY YEARS can cause oral planus :((((( I do NOT believe Gelclair made my oral planus get worse!! As that is about as safe as anything can be but I just believe my Advanced Oral Planus got worse on its own due to heart meds I was on to the point Gelclair or nothing else helps!!!|
|BetterNOmore 2 July 10|
|Hi guys....I have had a permanant one on the underside of my tongue for like 3/4 months now. My referral to the dental hospital is at the start of June, but my Dentist thinks it is Oral Lichen Planus. You need a biopsy to determine whether you have this, as with outruling carcinoma. Any of you get a referral to the oral hospital? Mine are present in exactly the same spot probably every 2-8 days and last 48 hours then go. It does not really heal at all, but does disappear into a very unnobtrusive plate of white. My dentist referred me, and I am very lucky that the NHS here in London seem to take it seriously, as so many do NOT take ulcers seriously.|
Has anyone thought about this Oral LP? My Doctor says 200,000 people suffer in the UK. A treatment is Cortisteroids which ease the pain - the ulceration should heal within 18 months - up to 2 years and is an autoimmune disease. Stress can cause it. You should cease all: Alcohol, smoking, sharp, spicy, acidic foods. Mine definitely flare more when i drink more of eat poorly.
What do you guys think?
|EmmaUK1979 2 May 07|
|As I wrote I tried Prevention mouth rinse and yes it was the Oncology formula. I don’t know if it’s because my mouth sores are from Advanced Oral Lichen Planus or if I am just a odd one but all the products that help some others just do not help me :( I just don’t get it how others tolerate all the mouth products that have mint in them and other ingredients that not only burn my mouth extremely too much but also makes my mouth sores spread/larger and more painful but thanks for anyways!|
|GettingALittleBetter 9 February 07|
|I would try the Prevention mouth rinse formula for oncology patients; after suffering|
for 40 years it has helped me but I only have the canker sore problem and not hte other
that you have.
|bryn 4 February 07|
|Sorry Dom to not reply sooner! I just now saw your message. The ingredients to Gelclair are:|
Deionised water, polyvinylpyrrolidone (PVP), maltodextrin, propylene glycol, PEG-40 hydrogenated castor oil, potassium sorbate, sodium benzoate, hydroxyethylcellulose, benzalkonium chloride, flavouring, disodium edetate, saccharin sodium, sodium hyaluronate, glycyrrhetinic acid.
I copied that from the website:
There also is more information there about how it works, etc. It might sound like bland marketing guff but I know it is the only product that helps me and I am very thankful for it even though it is highly over priced!! Dr. Cutler I appreciate your offer of help but trust me after already having doctors and dentists trying me on several different products FOR YEARS as well as what I have tried on my own I do not believe there could be anything you could add to help and since I know Gelclair helps and does not make me worse as most products do and with the other ones not helping, I won’t take any chances on trying anything else that will make my sores/pain worse.
|GettingALittleBetter 3 February 07|
Please call my US toll free #
I will try to help you.
Dr. Edward Cutler,
Inventor of SQUIGLE® Toothpaste
|Dr. Edward Cutler 19 January 07|
|I had a quick look at their website, mostly bland marketing guff, I’d like some see some detail about what’s in it and how it works, further information most welcome.|
|Dom Walton 19 January 07|
|Thanks Dr. Cutler but I can not use any products with peppermint or any other kind of mint as it burns too much. Keep in mind it’s not just mouth sores which is bad enough but very painful gums that advanced oral lichen planus causes me. When or if I am able again to use any toothpaste I would be glad to try Squigle. Oh, and I need to clarify from my first post above that the company that I was referring to that reduced the amount of Gelclair and increased the price double for the product is here in the United States even though the maker of Gelclair is in another country. I want to clarify that because there are other companies in other countries that do not market the product here and I don’t know what their prices are so I am only referring to the company here in the US that now handles Gelclair that reduced the amount of the product while doubling the costs. The company that use to have it here was much better and much more compassionate with their costs!|
|GettingALittleBetter 18 January 07|
Have you tried using SQUIGLE® Toothpaste? They sell it on this website, with a money back guarantee.
Hope you get relief.
Dr. Edward Cutler,
Inventor of SQUIGLE® Toothpaste
|Dr. Edward Cutler 18 January 07|
|I have suffered from Oral Lichen Planus for several years. When it first started it was only spicy foods that would hurt my mouth but then it got to be that all foods hurt my mouth and brushing my teeth was so painful that it felt like a hundred splinters in my mouth and no way to get them out. At first steroids and other meds helped but then nothing helped. My Oral Lichen Planus then started spreading from my gums to all the inside of my mouth and I was getting sores all in my mouth. It spread to even my tougue and my lips where I could not even put my lips together it was so painful and they bleed something awful. It got where even drinking water was painful so now eating or drinking anything hurts but since I have to eat I tried puree foods which helped me eat but it was still painful. Think that was as painful as it could get? Nope! As then it got where the pain was even when I wasn’t eating or drinking anything at all and would keep me awake crying in pain. The doctors and dentist had tried me on everything known and they either made me worse or didn’t help. I don’t know how people can tolerate rinses and meds with ingredients such as peppermint and alcohol in it but I couldn’t tolerate them and they would make my sores worse. I kept doing research in hopes of finding relief, any relief and I finally found it for me. Thing is this is very expensive but when you are in enough pain you will do anything and for me I rather cut the heat way back to help pay for this drug that does take a prescription for it. The name of the drug is Gelclair. There is not hardly any side effects at all especially compared to steroids. It did tingle a bit using it but that tingle was nothing compared to the pain I was having all the time so I kept using it and within three days the pain that I had when I was not eating, that pain had stopped. Then it about a weeks time I gradually started adding some foods without seasonings and the pain was so much less. For the first time in around two years I am actually able to eat some foods. I can not eat just anything but I am so thankful for the relief I am getting. There use to be another company distributing the drug and they were much cheaper. Another company took it over and lowered the number of packets in a box and they doubled the price of the product. I know this is only my opinion but I think that was very greedy of the new company. The other company had some compassion to the pain people like me where/are in!! But the product does work! Gelclair is primary for people that have mouth sores due to chemotherapy but Gelclair is also for people with pain from other gum disease and problems. If you can get the money for this if nothing else in the world has helped you then try this. No need in recommending any other products for me because after years of research and trying everything on the market both meds and natural remedies everything from steriods to teas from other gels to prevention mouth rinse from oral tetracycline to aloe, I had tried it all before getting Gelclair. I hate giving Gelclair free advertisement as greedy as I feel the company is for doubling the price and lowering the amount of product but I have to share for those that are suffering as much as I was that had tried everything with nothing helping them either. I think if I had found Gengigel before my oral planus had gotten so severe it might had helped but mine was just too far gone. I am still using Gengigel, too, just to see if it will help my gums heal but Gelclair has certainly helped with the pain. When I stopped taking Gelclair when I didn’t have the money to refill the product my pain came back and with a vengence so don’t think Gelclair is going to heal oral planus but just manage the symtoms!|
|GettingAlittleBetter 18 January 07|
Oral Lichen Planus183 messages in this subject.