Patient Comments: Lichen Planus - Symptoms and Signs

Question:

What were the symptoms and signs of your lichen planus? Submit Your Comment

Comment from: lp, 65-74 Female (Patient) Published: March 28

My symptoms of lichen planus are itchy rash, lost fingernails and toenails, and peeling skin on soles of my feet.

Comment from: Merle, 55-64 Female (Patient) Published: March 08

I have itchy feeling and am very allergic to dust and mites. With lichen planus black rashes appeared all over upper torso, back under armpits, joints and buttocks. I am using dexamethasone 1. I have very pigmented black patches on the upper body. Nothing helps.

Comment from: naha121, 65-74 Female (Patient) Published: November 15

I have no intention towards medications for alleviating nausea during my pregnancy. These contain preservatives and can cause any harm. Instead, I have been taking 'No To Morning Sickness' tea that helped end my nausea and it was safe being preservative-free and herbal. I was also constipated most of the time and this helped regularizing my bowel movement.

Comment from: cberrl, 65-74 Male (Patient) Published: August 01

After having mild lichen planus (LP) for years when I had teeth, I am now recently 74 and had the worst LP attack ever on in my mouth, with sore mouth and lips and a huge gash in my lower lip; very painful! Now I am getting better but it still bleeds a bit a night and it is painful to eat acidic foods. I need that 10 shots of gamma globulin and 10 shots of LypoZyme cure very much!

Comment from: alamogirl2, Published: July 28

This morning as my alarm rang, I turned over to hit the snooze. As I did this, I got dizzy. It wasn't the type of dizziness you feel when you suddenly get up. It was like the room was spinning, but I felt it in my head. It lasted about 2 seconds. I stayed in bed for about 5 minutes and got up. I didn't feel nauseous, and my head didn't hurt. It was a strange feeling! I have experienced that same sensation approximately 2 other times in my life. I was younger then, so I ignored it. I don't know how many times I've turned over to turn the alarm off, and I've never gotten dizzy.

Comment from: Fiona, 55-64 Female (Caregiver) Published: January 08

I have had lichen plans badly twice. It is starting up again now. I had steroids, etc., in the past. Cured it myself with lavender cream.

Comment from: Koolbreze, 65-74 Male (Patient) Published: May 23

I started Harvoni therapy April 5 1917 and by Easter broke out with lichen planus. Yet another side effect of Harvoni.

Comment from: Duane, 25-34 Female (Patient) Published: January 09

This is my 5th week with acute bronchitis. I thought it was going away, had a great night's rest last night and feel worse again today. I swear that I feel half dead. I've been to two doctors, have missed too much work, although I am in the process of filing for leave of absence (LOA) and have reached the point where I am just angry. I haven't been this sick since the flu in 1992; I swear. I am calling out from work again tonight, add the day to my LOA application and go home and sleep. Thanks for letting me vent.

Comment from: Naomi, 55-64 Female (Patient) Published: March 01

I woke up early in the morning (3:30) with nausea which eventually became 'throw up'. Since then I have thrown up about 9 times; the last one just now at 11 AM. Diarrhea began shortly after the first throw up episode and I have had probably 12 to 13 episodes, the last one around 10:45 AM. I have not eaten anything, took Pepto-Bismol around 7:30 AM, but threw it up shortly afterwards. I had a clear drink similar to Sprite which resulted in the 11 AM throw up episode. I have chills, but no pain, and my tongue and teeth are black. Last meal was 2 BBQ hotlinks (fresh) and Spanish rice made from a packet of dried rice with seasoning. I had purchased it over a year ago, and feel this may be the cause. I have had food poisoning in the past, but it never lasted this long.

Comment from: Lainey, 65-74 Female (Patient) Published: January 05

My problem began with 1 bright red bump on the top of my foot. It didn't itch, but then small bumps appeared around it. I decided to see my dermatologist who diagnosed it as lichen planus. Then he biopsied to confirm. By then the rash spread to my calves and thighs. Itchy, itchy. The doctor gave me a cream to help the itchiness and calm it down. It helps a little. Now above and below my waist is covered and very itchy. I want it to stop, I hate it!

SLIDESHOW

Rosacea, Acne, Shingles: Common Adult Skin Diseases See Slideshow
Comment from: KIone, 65-74 Female (Patient) Published: December 23

I have had lichen planus for 5 plus years starting on my hands and feet and eventually settling in my mouth. Nothing seems to help in my mouth. I have white little blisters and it hurts all the time. The taste of food is metallic after I eat. I have had little to no relief in 5 years and there are days I want to just cry but I don't!

Comment from: Allene, 75 or over Female (Patient) Published: November 17

I have oral lichen planus. I first started noticing little blisters in my mouth that would break and be sore for a couple of days. I also felt ridges on the inside of my cheeks. Eating sugar seemed to aggravate it. I noticed that artificial sweeteners in soft drinks and chewing gum also made my mouth break out more. Recently my oral hygienist told me my mouth was the worst she had ever seen and that I had a couple of ulcers in my mouth. I had chewed some sugar free gum over the weekend. I am trying to cut out as much sugar and sugar substitutes as I can to see if it makes a difference. It has been about a week now, and my mouth is feeling better.

Comment from: PontGTO, 45-54 Male (Patient) Published: October 29

I noticed after a visit to my orthodontist I contracted a sinus infection. A few weeks later I had a root canal done and the dentist said I had a white patch in my mouth and it could be from brushing to hard. Then I noticed my tongue would burn and my mouth became sensitive to spicy/hot foods. So I looked inside my mouth and was shocked to see white and red patches. This was devastating, I thought oral cancer, but then I had none of the symptoms when researched, so as I dug further into the disease world I found (on my own) that I had every symptom of lichen planus. Of course I thought of when I had this before and it went away in about 7 weeks. What I did to rectify this problem was taking 3000 milligrams of penicillin and 30 milligrams of prednisone and 600 milligrams of selenium for 10 days and this seemed to work very well.

Comment from: giello, 55-64 Female (Patient) Published: June 12

I thought I was getting canker sores on the inside of my cheeks. I went to my ear, nose, and throat doctor. He immediately said I had oral lichen planus. This was last August of 2013 we tried antiviral and nothing happened. The burning was difficult to take. It was hard to eat or drink. I was in constant touch with the doctor, and we tried small doses of prednisone for 10 days. I noticed it felt less painful, but not gone. I get thrush on occasion, and I needed fluconazole. After 7 days, my mouth started to clear significantly. Just about 3 weeks ago, I was put on 20 mgs of prednisone a day for ten days along with 150 mgs of fluconazole. Today is my last day on medications and for the first time in 10 months, I am clear, no outbreak! I can only hope that it's gone forever.

Comment from: Mouthy, 65-74 Female (Patient) Published: February 04

Four years ago I had an endoscopy. The next day I was hospitalized for the ulcers in my mouth and throat. A year later, it was diagnosed as lichen planus, after a biopsy. The rashes are painful and frequent; my mouth oozes blood at night; my cheeks swell so that my teeth cut them open; my legs, scalp and back are covered with lesions and I am in constant pain. I have seen 6 different doctors and specialists, to no avail. They aren't even giving me treatment or they try to pass it off as eczema even though the biopsy says it is lichen planus. I am at my wits end. Good luck to all and I wish you well.

Comment from: PAT, 55-64 Female (Patient) Published: January 29

My lichen planus began years ago; I had very dry skin and places on my arms that felt bruised yet the doctor just told me it was my age, at the time I was 42. I at times felt my fingernails were on fire and couldn't find relief from this and couldn't tolerate any kind of cold and still can't. My skin got these little brown patches and when I scratched them it would break and clear fluid would be there and it would burn like when you burn yourself only they weren't burns. It would leave a hole there and then dry up and heal but others would take its place. Then it got to where I am today, imagine going from age 42 to 60 before finding a doctor that said, hey that's lichen planus. Finally, but then finding there's a way to help but not cure; well, it's good to know.

Comment from: Rae, 65-74 Female (Patient) Published: December 16

I have had lichen planus on the under right side of my tongue for about 5 years after I was put on hydroxychloroquine. The whitish eruptions are very painful. About 2 months ago the eruptions changed and the pain and the change in the eruptions and a node in my neck that was starting to swell sent me to my doctor. They did a biopsy and now I have squamous cell carcinoma of my tongue. I will be having surgery soon after going through clinical trials to shrink the tumor. After stopping the hydroxychloroquine the lichen planus is fading.

Comment from: Linda, 55-64 Female (Patient) Published: October 15

For over two years now, I have suffered from this awful malady. My body reacted to a medication for diabetes and after 9 months of misery, lichen planus was finally diagnosed. It first appeared as a rash on my thighs, front and back, with blisters that bled and bumps in my mouth and sores on my tongue. It quickly spread to my vagina, anus and labia. After removing all acidic foods for the last two years, I again tried tomatoes with no problems. I have added back most foods but have found that I still can't eat garlic or pineapple. The garlic triggered a nasty outbreak but I felt it immediately as my esophagus swelled making it difficult to swallow. Unfortunately, it affected my entire digestive tract and I am again suffering the intense itching and lesions in the genital area. I found that sucking on cinnamon or peppermint candies immediately reduces the swelling, bumps and lesions in my mouth. It burns but afterward the swelling is reduced. I am yet to find a relief for that.

IMAGES

Lichen Planus See a picture of lichen planus and other skin eruptions See Images
Comment from: lorna, 75 or over Female (Patient) Published: October 08

My experience with lichen planus began three years ago with the appearance of white patches on the inside of my cheeks. It was diagnosed by my dentist who sent me to a specialist. By the time I went, the disease had taken the form of painful, crater-like ulcers inside my mouth and raised blisters on my tongue. Like many seniors, I have been prescribed a number of medications, many of which cause a very dry mouth, and I suspect this is what started it. It dies down sometimes for a few days or weeks, but this last outbreak has gone on for months. It no sooner heals in one place than it erupts in another. I've been prescribed a special mouthwash but lately it hasn't been much help. Any acidic, spicy, even strong-flavored food, like nippy cheese, exacerbates the condition. I also have very sore and itchy flare-ups in the genital region.

Comment from: Anon, 75 or over Female (Patient) Published: November 15

I have been in excellent health until 2 months ago. I started having diarrhea numerous times a day. It would wake me up in the night. I also experienced abdominal cramps. I saw my primary doctor. They did a CBC and chemistry panel which was all normal. I went back after two weeks with no improvement. Stool cultures were negative for E. coli, white cells, but positive for occult blood. Saw the physician's assistant at the gastroenterologist office. Blood work was negative for celiac, sedimentation rate. I have a high C-reactive protein. Now I am waiting for results of stool culture for parasites, C. difficile from gastroenterologist. I had a similar bout of colitis symptoms last year, but it resolved after about 3 weeks. I had a colonoscopy in January and everything was normal. I exercise regularly and eat a diet that has lots of fresh fruits, vegetables, hardly any dairy or grain. I am seeing the gastroenterologist in a few weeks and I just hope to have a diagnosis that will show a resolution. I have lost a good bit of weight and don't like to be too far from a bathroom.

Comment from: Gharris, 45-54 Male (Patient) Published: December 15

I have experienced many reoccurring episodes of lichen planus over the years. Very painful and frustratingly hard to get diagnosed and treated. Finally treatment success with ultra violet light treatment. It is the cure and after a few treatments seems to diminish the itching. I have been free now for 12 years.

Comment from: Rosie1, 65-74 Female (Patient) Published: August 03

I have had lichen planus for eight years, I recently found a cure for the itching, and since using it I have had no itching. In the past I have torn my skin to pieces on my ankles and lower leg, no sleep and swelling on my ankles as well. I don't say it's a cure but it does stop the swellings, they have gone down and no itching. The treatment is with a wash called Difflam, gargle with it but do not swallow, gently rub the liquid onto the skin area affected. Good Luck, I hope it helps you.

Comment from: Trish831, 45-54 Female (Patient) Published: August 07

I was diagnosed with lichen planus in the summer of 1977. I can't remember what the medicine was called but along with it I had to bathe in vinegar 3 times a day. They didn't know much about it and it was diagnosed by a dermatologist. It cleared up in 6 weeks and I had no recurrence of the scaly rash on my arms. However, I recently started getting vertical ridges on my fingernails and when I googled it I found it could be a symptom of lichen planus. Something to ponder.

Comment from: malta, 55-64 Male (Patient) Published: January 08

Lichen planopilaris is one of the worst condition you can have when you visit any doctor. They give many cures but nothing cures the condition. My scalp has been itching for six years and the hair is falling every day.

Comment from: 55-64 Female (Patient) Published: October 31

I am 59 years old and have had lichen planus for about 9 years. I am still waiting for it to go away. It started first in my mouth and my gums looked like lobsters. An oral surgeon diagnosed me with a punch biopsy. My dentist prescribed Protopic ointment which was prescribed to another patient of his who went to the Mayo clinic. I think stress definitely impacts the lichen planus. I have a doctor who is board certified in allergy and dermatology. We have tried cortisone oral rinses with limited success. The lichen planus has affected my gums to the point a couple of molars are ready to be extracted. I get teeth cleaned with sedation every three months. Avoiding all spicy foods or citrus helps. The pain and burning in my mouth varies in severity from barely noticeable to moderately severe. My lips burn and throb in addition to gum pain. Shortly after the gums became painful around 2002, I started to have the severely itching breakouts on my legs, arms, torso. I can't avoid scratching these things, and they bleed like crazy. I have taken periodic oral doses of steroids which help for awhile. Local injections of a lidocaine/steroid mixture seem to help the most to calm down specific areas. When the rash spots heal they turn a darker color. These fade very slightly over time. My dermatologist has a very kind PA who gives me a handful of injections when needed. Sleep was a big problem due to the itching until my doctor gave me a prescription for Vistaril pills. I also go through bottles of Benadryl (diphenhydramine).

SLIDESHOW

Rosacea, Acne, Shingles: Common Adult Skin Diseases See Slideshow
Comment from: Silverfox44, 65-74 Female (Patient) Published: August 17

Both my sister and I suffer from lichen planus. We both have it particularly on our backs. When I had it in my mouth a doctor told me to use Cepacol and it worked! At present I use a lotion bar made by Paradise Potpourri on the little blisters in my groin and it stops the itch and makes them go away for a while. A plain vinegar douche stops the itch in the vagina for at least a day or two. But, it does dry you out. I used apple cider vinegar on a paper towel on my back and the hard, crusty skin came off - it also gave me some relief. - My lichen started with a bug bite on my back. I drink 1 teaspoon of apple cider vinegar in an 8 ounce glass of water daily. It makes you burp - but it relieves the suffering. I hope this helps someone out there.

Comment from: CDZ, 55-64 Female (Patient) Published: June 04

I am 58 year old and have suffered with lichen planus for many years. The lesions are on the left side of my mouth on my upper gums. I have smoked on and off over the last few years and that doesn't not seem to affect my breakouts (yes, I know I am an idiot for smoking for all of the reasons). I have discovered when brushing my teeth it is much better to not use toothpaste and to use warm water on my brush. I use a very small amount of baking soda. Stress is definitely the trigger for severe ulcers. I have been told by a specialist at a university medical center to cut out all sugar from my diet. I am on my fourth day of sugar withdrawals.

Comment from: Tulip65, 45-54 Female (Patient) Published: October 25

I was diagnosed with Oral Lichen Planus in 2009 after first noticing changes to my ventral tongue for about a year or longer. This article is wrong in stating that lichen planus does not have any long lasting ill effects. Lichen Planus of the skin is not usually a concern in the long run but there is a 15% chance of oral lichen planus developing into oral cancer. I was one of those 15%. I was followed every 3 months after my dx of Lichen Planus in 2009 by an Oral Cancer Screening Clinic and in Sept 2011 my last biopsy was + for SCC. In Oct 2011 I had a Co2 Laser Glossectomy to remove the tumor. Please if you have oral lichen planus you NEED to be assessed regularly by an oral surgeon, ENT or your dentist. Advocate for yourself and do NOT hesitate if you notice ANY changes or have pain. I am a 46 year old live long nonsmoker, occasional social drinker and am HPV-.

Comment from: knis, 45-54 Female (Patient) Published: October 05

I just found out I have lichen planus and it stinks, although I have had it for more than ten years, and how I found out was through a nurse that I was talking to one day after cna classes. We were talking about other problems and it came up in conversation and her dentist had told her that is what she had, even though lichen planus is very painful at least I know I'm not by myself. To everyone out there who has this, my heart and prayers go out to you.

Comment from: Holly, 75 or over Female Published: September 08

I have had Lichen Planus for over a year. It began on my tongue which was very painful and became erosive. It has since infected cheeks and lips and gums. In viewing your website yesterday I read that it is sometimes related to the use of Quinine which I have taken regularly at bedtime for 3 years for severe night time cramping. It appears I must decide which of the two is the worst, night cramps or oral Lichen Planus. I shall try and wean myself of Quinine. Thanks for the information.

Comment from: sidneynsw1, 45-54 Female Published: August 17

After finally being diagnosed with lichen planus (I had it in my mouth and vagina) and after seeing countless doctors being told there is no cure I finally found a doctor (dermatologist). That has helped me. He put me on 2 tablets Deptran10 and Plaquenil Tablets 200mg. It has cleared my vagina and my mouth although at the moment, it has returned to my mouth He has adjusted the dosage which again has cleared. I hope this helps someone.

Comment from: heididoll, 35-44 Female (Patient) Published: April 12

I am 42, female, married w/two children. I have had Lichen Planus since the mid 90's. It first started as a little spot on the top of my right foot and because it itched so bad I would scratch it until it would bleed but it felt so good to scratch. A few years later it started to show up on my ankle then a year later it showed up on my left ankle and now the outer side of my legs but below my knee. I also am getting spots on my elbows and wrist. I also have oral Lichen Planus that makes my gums swell and bleed when brushed. I agree that stress makes it worse. I quit drinking alcohol over a year ago since I noticed that it made my legs swell which made them itch like crazy. I can't give up caffeine but I'm sure that doesn't help either. I have other health issues but can't seem to link them to the Lichen Planus. I really feel bad for anyone who has to experience this horrible disease. I don't wear sandals, shorts or short sleeve shirts, not because my skin looks so bad (it does) but because the sun makes it worse. It took several trips to the Dermo to figure out what I had and then a biopsy to confirm. My dentist took one look at my mouth and told me what I had. I have not experienced one medication that helps at all. I feel your pain.

Comment from: Elizabeth, 45-54 Female (Patient) Published: March 09

I have had outbreaks over the years and stress seems to make it worse along with salt and spices. I currently have it the worst ever in my mouth. The sores are so deep that I can feel my jaw bone, and eating is difficult. I'm noticing dark patches on my lips and the skin darkening around my mouth. I'm not sure if this is related and not sure how long it will last. Most outbreaks in the past lasted several months. This has been going on for about five months.

Comment from: pavan, 25-34 Male (Patient) Published: October 25

I am suffering with the lichen planus in starting stage.

Comment from: suzyk, 65-74 Female (Patient) Published: January 14

There is relief from lichen planus especially in your mouth. Gengigel is incredible, it calms the pain and itch and it takes it away much quicker than I thought would be possible.

Comment from: Martypants, 35-44 Male (Patient) Published: April 07

I have suffered with oral lichen planus for 6 years now. I think that it is definitely stress related as just a few months ago after a stressful episode I started to get spots on my arms and the back of my legs. Exercises like running is a great stress reliever and I hope that this will ease my symptoms.

Comment from: Merreymae, 55-64 Female (Patient) Published: April 02

My dentist said she sees lichen planus in women of a certain age. She believes it is because of low estrogen. When I take estrogen, it subsides. I was using a keratin shampoo when I got it on my arms. When I scrubbed my arms after shampooing or did not use the shampoo, it went away.

Comment from: 75 or over Female (Patient) Published: May 21

I have been diagnosed with lichen planus of my oral cavity, about 20 years ago by my dentist. Symptoms are sore gums with white spots in my mouth. At this time, I still have it.

Comment from: LIgal149, 55-64 Female (Patient) Published: June 20

I was 62 year old and was just told I have Lichen Planus. It started on my right leg (shin area) and a little on my left shin. they did a biopsy which confirmed it. God I hope I don't get it in my mouth like other people have that I read about. I don't know how it started, I think it was a bite but not sure. I'm using Clobetasol Propionate which as stopped the itching and seems to be going away. The Dr. told me it can be caused by Hepatitis c which scared me to death since I never did drugs, then I saw this web site and how many people have it. Well I guess I've joined the club. I also have pain in my left side and knee going down my leg . I have sever osteo in my spine and hips. It's tough getting old! God Bless us all who have this.

Comment from: lee, 65-74 Female (Patient) Published: April 02

I've had this for three years. It gets better and worse, but never goes away. Diet doesn't help, nor do the creams or shots. It seems like it's some kind of a plant with a brain! Stress and spicy food make it worse.

Comment from: Jennybell, 55-64 Female (Patient) Published: March 22

I'm 63 and have had lichens planus since my 20s. I joked to my doctor that the only two places I hadn't had it were on my face and fanny. Big mistake! I just had a severe episode on my outer and inner labia, traveling down to my mid-thigh. I got over that flare-up and now have it all over my lips. My doctor prescribed Betnovate.

Comment from: Sammo, 25-34 Female (Patient) Published: January 15

I've just been diagnosed with lichen planus. It first started as itching on both my feet and then my ankles. I now have it on both my legs, wrists and hands, front and back of them. They are super itchy. The doctor I work for gave me Triamcinalone cream. It helps slowly but, I noticed a difference in irritation after a few days of use. My feet don't itch nearly as bad and the spots on my wrists don't look as irritated. I've never had any type of skin issues so this was weird. I don't take any medications and as far as I know I haven't been exposed to anything out of the ordinary. I had one person tell me it was an autoimmune response to stress. So, I'll try stressing less and see how it goes.

Comment from: Erica, 13-18 Female (Patient) Published: January 03

I try so hard to keep my stress level down. But it is way too hard to do when I was diagnosed with lichen planus when I was 14. I've had it for a year now. My dermatologist had never seen such a severe condition. It started off on my wrist, then slowly over a month it got chronic and worse. It was spreading severely. I had to go to the ER because I had blisters on the bottom of my feet that were as big as baseballs. I couldn't walk. Now I'm almost 15 and I still currently have lichen planus. Every time I get lowered on steroids I get outbreaks. I mean I have outbreaks when I'm on a high dose but they are not fresh. I just would just really like to talk to somebody that knows a little more, because every time I go to the doctors they always tell me the same thing.

Comment from: 55-64 Female (Patient) Published: December 11

It took almost a year for someone to finally determine that the sores in my mouth were lichen planus. It's partly my fault for waiting so long to ask for a referral to the periodontist. He knew right away. The tell tale sign for him was the white spiderweb like pattern on the inside of my cheeks as well as my red and inflamed, painful gums. He prescribed Flucinonide gel .5% to be applied to the gums 2-3 times per day. That is the first relief I have had. The soreness is much reduced and I am hopeful that I will regain some of the gum tissue I lost. My gums are much receded as well as very thin. I have been in treatment for a month. He has talked about a biopsy to rule out cancer, but no action yet.

Comment from: russelsgirl50, 45-54 Female (Patient) Published: November 13

In 1961, I was born with lichen planus on my legs and ankles. My mother had gotten the painful rash on her legs when she was pregnant with me. I also had no toenails at birth. For many years we went to many doctors, but they were clueless. For several years we both had many shots put in our legs to see if it would help. I remember how they held me down to put the 15-20 shots in my legs weekly. So I grew up with the itching and pain for many years. My mother passed away, she still had the severe rash. My mom was a diabetic, which made her lesions very hard to heal. I on the other hand found a doctor that knew exactly what I had. He prescribed clobetasol ointment. It has done wonderful for me. I wish I had been able to find this when my mother was in such pain. Now I live with mostly just scaring on my ankles and legs. And when I have a flare up, I use the clobetasol and it calms down in a week or so.

Comment from: laniecss, 55-64 Female (Patient) Published: September 26

I was diagnosed with lichen planus pilaris in my mid 30's , 20 years ago. I also had lichen planus, white patchy streaks in my cheeks which were quite painful. I would tell the dentist at that time in the late 1970's. He thought that I had early signs of oral cancer from smoking cigarettes. I did immediately quit smoking. When I was in my mid 30's I developed a rash on my forehead which looked like a sunburn that peeled. I also had a rash on my forearms and lower back, and small clusters of little bumps. I also had pimple like lesions on my pelvic area surrounding my pubic hair. I also lost the hair on my mid shins and forearms. Next I noticed my hair thinning and then it fell out in large circles. I eventually found a dermatologist in Boston who diagnosed it as lichen planus. I had a biopsy of my back and scalp and was told it was most likely lichen planus at a 99% rate of certainty. I was told it was a self limiting disease. It has subsided but I have lost large patches of my hair. I was treated topically with Clobetosol drops for my scalp and I also had Kenolog Injections when it flares up. It came back again in my mid 50's, but not as bad. I now am going to try doxycycline, and may try plaquenil if i have no side effects. I now wear a hair piece of natural hair that clips in with my own hair. This is made me much happier and less self conscious.

Comment from: Janet1400, 55-64 Female (Patient) Published: July 06

I have had lichen planus since 1999. The first time I broke out on my legs and progressively got worse. I went to doctor and did a biopsy. I have it about every two years. I have it know and this is the worst case I have ever had. I have it on my legs, under arms, around the breasts, around navel and also have a toenail that has left a ridge in it.

Comment from: DavidB, 45-54 Male (Patient) Published: April 23

I have had lichen planus for about 5 years. It started on my lower lip as white plaque, like molting skin. It kept progressing after a biopsy confirmed lichen planus. A dermatologist used a variety of topical ointments, but the lichen planus kept spreading across my lower lip and ulcerating. I had to stop spicy foods. Ultimately a tumor developed, which was frozen off. About 8 months later the tumor came back. This was 2010, after three years with lichen planus. A tumor biopsy revealed squamous cell carcinoma, and it was removed by Mohs surgery, with beautiful results. Unfortunately, the surgeon missed some cells and the lower lip and lymph nodes in my neck became cancerous within a year. I have had about 3/4 of my lower lip removed and replaced with a flap from my upper lip, and 80 lymph nodes in my neck removed. There is still a patch of LP growing back on the corner of my mouth where the bulk of my original lower lip remains. Now, I've been doing lots of research and ran across low dose naltrexone as a treatment for autoimmune diseases, and in particular MS. But it also shows promise for other autoimmune diseases. I am trying to convince my family doctor to prescribe low dose naltrexone. Both surgeon and oncologist concur that it can't hurt. I want to get rid of this lichen planus so the cancer doesn't take the rest of my lip! Best regards to all.

Comment from: Tracey, 45-54 Female (Patient) Published: April 19

Linear Lichen Planus, started on my left foot as if I had scratched it on a thorn. It began to thicken and widen and itch a little. Then a dry patch on the top of my left thigh rapidly grew into the now familiar bumps and it spread faster than I could have imagined. I was diagnosed but the treatment was not effective enough. I went for second opinion and had a biopsy. It has since spread across the top of my vagina on the left, up the right side of my body, on both inside arms, and on the outside of my breasts. It does not itch, but it sure does make you feel so self-conscious. Thank you to all those who wrote in here as I will definitely make sure to keep a check on my mouth as well. I am convinced it started as a stress related disease, recently 'acquired' a new boss and 'it' is hell.

Comment from: mjof, 45-54 Female (Patient) Published: January 06

I have had lichen planus for 12 years. I have it on my back, and under breast (open blister). Red spots turn brown and legs look covered flea bites.

Comment from: LichenPlanusFemale, 25-34 Female (Patient) Published: April 05

I'm now 31 yrs old, but can remember having a small linear skin irritation right on my groin area next to the outer/right labia when I was a young child. It was pink and periodically got itchy, and then would peel. As I grew older, the irritation persisted, and another one started forming along my right labia (almost perpendicular to the original one). It was pink bumps that became dry and itchy, and then would peel off, upon scratching. I would use Vaseline to alleviate these symptoms, but never really sought a dermatologist's help, until I was about 22. She had misdiagnosed it. She first treated it with a topical corticosteroid ointment, which helped, but I think I took it for too long, as the skin became slightly hyperpigmented and also the area adjacent to the lesion was slightly depressed. Today, she numbed and cauterized the lesions, and in 2 days I'll then reapply Elidel, and see if that can prevent the lesions from forming again. It's important to note that this condition doesn't go away and then return. It's persistent and chronic. I've had it for as long as I can remember.

Comment from: 35-44 Female (Patient) Published: January 26

I have just been diagnosed with lichen planopilaris. My scalp hurts and is very itchy and has some bumpiness. They did a biopsy to diagnose it. I am learning that I might also lose my hair with this condition, which disturbs me greatly. I wish there were more information about this rare form of the disease, but I do not see much out there.

Comment from: fancy, 55-64 Female (Patient) Published: March 20

About a year ago I had some dental work. Eight of my upper teeth received caps. Soon after that, white patches appeared on my tongue and inside my cheeks. My dentist told me it's lichen planus. I've been reading up on this and found out that an allergic reaction to dental materials can cause this. Has anyone else had this problem after dental work?

Comment from: too many problems, 55-64 Female (Patient) Published: October 18

I was diagnosed with lichen planus about 2 years ago but went to many doctors before a dentist told me to go to a dental university. That is 2 hours each way for me. I had biopsy on my mouth and also had problems with my vagina. I went to another doctor for my vagina both biopsy were positive for lichen planus. My mouth had bad lesions on my upper gums and the pain from intercourse during intercourse is unbearable. So now I have two different Doctors and now I am breaking out on my wrist, forearms and shins. I need one doctor who could take care of all my breakout areas instead of three. I also have fibromyalgia and lupus, I am 63 years old.

Comment from: chopperone, 35-44 Male (Patient) Published: May 30

My lichen planus started 3 months ago with bumps on my scalp that became uncontrollably itchy. I really didn't give any thought to it because I always shave my head bald and accumulate small bumps from time to time. But this time it was different, though the bumps went away, I noticed brown spots on my scalp. Finally last month I was diagnosed with lichen planus. We've controlled the itchiness for now, so we're working on the brown spots.

Comment from: Duffy, 65-74 Female (Patient) Published: March 23

I have had lichen plan us for about 4 to 5years. I use calmoseptine to relieve the pain and itch. It doesn't cure anything, but it feels much better. It is used for diaper rash so it is safe for the vulva. I found that rinsing my mouth with salt water everyday helps with the bleeding gums and sore cheeks. My doctor said today that he wished he could find a cure and name it after me. There is nothing new on the market for those of us with this nasty condition. A support group would be a great idea, since I know no one else with this. Most people and many doctors have never heard of it. Good luck out there.

Comment from: 55-64 Female (Patient) Published: March 23

My lichen planus was diagnosed with a skin biopsy two years ago after about 10 years of a rash progressively getting worse. It affects both my forearms, from elbow to the outer wrist, gets intensely itchy and bleeds when scratched -- but the itching seems to stop then. I have the purple spotty form (very unsightly), but also non purple itchy lumps especially in my elbow creases. I use cortisone creams but will try Chinese herbs next. It is a frustrating condition as I never know when it will flare up except that when I sweat or get hot. Sometimes certain materials next to skin will aggravate it (wool or rough surface is diabolical). I moisturize very well and do not use soap, as this helps. It is worse since menopause. Anyone have any other remedies?

Comment from: jillpill, 55-64 Female (Patient) Published: February 24

I have had this for about 2 years but had an outbreak when I was 30 but it didn't last long mouth sore I had to but numb med to eat or drink it sucks bad some foods burns my mouth and tears roll down my face bumps all over my legs put cortisone on them and they heal only to have more pop up overnight it's in our blood stream, did a biopsy and it was confirmed. My mouth is what is my most painful can't chew gum...hope we find a cure soon GOD help us

Comment from: fergiesgirl44, 45-54 Female (Patient) Published: July 22

I have had lichen planus for years. Mine is on my feet and ankles. It iches like crazy and I scratch until they bleed. I was told that there was no cure for it. I need to find some help, sometimes I itch so bad, I wish I could just cut off my feet! I am embarrassed to wear sandles in public because people ask all the time what is wrong with me. I can't blame them because it looks contagious.

Comment from: lindalew, 65-74 Female (Patient) Published: May 05

I have had lichen planus since I was in my 20's. It would show itself about once every five years or so. Right after I turned 60 it came to stay. It is on my right arm and leg and between my thighs and the labia. I find that if I eat any kind of chips it will bother me or drink coffee. Nothing the doctors have given me has helped. Prednisone helped at first but not now.

Comment from: Sue, 55-64 Female (Patient) Published: February 03

My lichens appeared on my lower legs after I received chemotherapy 10 years ago for breast cancer. No treatment till today cured the disease. I went to a dermatologist about 2 years after the lichens appeared for the first time. None of the prescribed creams I used cured my problem.

Comment from: Susithedancer, 45-54 Female (Patient) Published: January 31

I had lichen planus with brown finger nails for a couple of years and no one could tell me why. I eventually went to a different dermatologist and he asked to look in my mouth and found the lacey look inside my cheeks. The brown nails finally went away, but my mouth inside the cheeks sloughs thin layers of skin.

Comment from: laura, 65-74 Female (Patient) Published: October 26

I control my oral lichen planus with golden seal root, only thing to ever help after 5 years. Mine showed up two weeks after a tooth implant.

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