Patient Comments: Lichen Planus - Describe Your Experience

Question:

Please describe your experience with lichen planus. Submit Your Comment

Comment from: Minds Edge, 35-44 Female (Patient) Published: August 12

I have lichen planus (LP). Mine developed after I was bitten by a tick. First I was diagnosed with Rocky Mountain spotted fever, and that brought on LP. I've had mine for 15 years. This year is the worst so far; very itchy, blisters, white bumps, purple and red bumps on my hands and feet. It usually goes away when winter comes and doesn't show back up for a few years. This is a nightmare.

Comment from: mona, 35-44 Female (Patient) Published: March 25

After suffering from lichen planus for months, almost a year in my mouth and skin I got to know that I have celiac disease and allergic to NSAID and yeast. So hopefully staying away from gluten, NSAIDs and yeast may eventually help me get rid of this. Interesting thing is no doctor could tell me why I was having these symptoms in the first 7 or 8 months.

Comment from: Yolanda , 45-54 Female (Patient) Published: January 18

I have been diagnosed with lichen planus two months ago. I started with Dermovate cream which resulted in a very positive outcome. The itching totally disappeared. Unfortunately I have to wait long for appointments to check the blisters in my mouth.

Comment from: Gill , 55-64 Female (Patient) Published: January 09

For 40 years I have been a sufferer of lichen planus, studied and photographed. My soles get itchy, it flares up on my legs, arms, torso, etc. I have found prednisone or cortisone helps the itch, etc. But what I do know is it hates the cold. Yes, it goes back into hiding when I keep cool, take cold baths and stay in a cold environment. If your body temperature rises due to stress, anger or anxiety, it will rear its ugly purple head, a tingle at the start. As soon as I spot it I relax, have a cool bath, and think positive stuff.

Comment from: Neornlc, 55-64 Female (Patient) Published: January 04

I have been suffering with lichen planus for about 4 to 5 months. Since it is autoimmune I will start an immune booster tomorrow. I have started to journal my food. I have stopped all pop, sweets and refined sugar pastry, alcohol, dairy and nuts. I have an appointment for allergist that I plan on seeing, until then coconut oil with calendula essential oil. I use light therapy and moisturize a lot. Fingers crossed; will keep you updated.

Comment from: Sorrow, 65-74 Female (Patient) Published: January 22

I have vaginal lichen planus. I am looking for cure for it.

Comment from: Workerbee24, 19-24 Female (Patient) Published: December 17

Within 3 months I have experienced almost everything everyone else with lichen planus has posted on this blog. I have tried cortisone shots prescribed by my dermatologist and saw no results. Out of desperation I have resorted to home remedies. I take 1000 mg of turmeric extract (curcuma pills) every day with guacamole mixed with serrano pepper for metabolic consumption. I lather with refined coconut oil, and do not use soap on the affected areas when showering. My rash is almost gone. Stay consistent and patient.

Comment from: Claire, 45-54 Female (Patient) Published: December 03

I have had lichen planus on my legs covering from the knee down, for at least 20 years. It is so itchy and blisters quite often. It has now appeared on my arm and there are a few spots on my stomach. I have tried so many lotions and potions but the only medication that gave me some respite was a course of prednisolone. The itching drives me mad and some days I can end up taking up to 6 antihistamine tablets. I wish like I am sure all of you do that they could find a medication that clears it up for good.

Comment from: Fishingjo, 55-64 Female (Patient) Published: November 05

Stress caused my oral lichen planus. I can't live with it in my mouth like this. So painful you wake up with it and go to sleep with it. I went to a specialist dermatologist, now took sample and waiting for results. I am going to look into shots. You never hear about this on the doctor show.

Comment from: Mouse, 35-44 Female (Patient) Published: October 30

I have had lichen planus for 7 years now. Doctors, pills and creams had little to no effect on my condition. But I found this wonderful product called Emuaid Max. I used it 3 to 4 times a day on my rash for a week and it was gone. It doesn't smell very good and is a little pricey but it works. And now I just use it when I have a flare up.

IMAGES

Lichen Planus See a picture of lichen planus and other skin eruptions See Images
Comment from: Praise 08, 55-64 Female (Patient) Published: October 23

Lichen planus is a horrible disease. I itch all the time and all the medications they have tried only have short term results. I have had it for 7 months. Prednisone is the only medicine that completely stops the itching. I have gained a lot of weight using this medicine, and the rash and the lesions leave bad marks. I wonder when it is gone, how I will be able to get rid of the scars. If there is help I hope it comes soon. I am so a tired of scratching and I have a hard time sleeping.

Comment from: Mac, 25-34 Male (Patient) Published: September 25

I am suffering from lichen planus since past 2 years. At the start, I went to a couple of dermatologists when a purple bump started popping and no one was able to diagnose it. For now, my dermatologist has prescribed me Dazit tablet and ointment. He asked me not to be stressed because it worsens the condition, and also not to scratch with nails. More you use nails, more it spreads. Instead use wet Turkish towels and put them where it is itching. Hopefully it gets better, it is so embarrassing I have to wear full pants and shirt.

Comment from: Worked for me, 45-54 Male (Patient) Published: August 28

I was diagnosed with lichen planus 8 years ago. My body was covered. My family doctor and then my dermatologist tried everything and it only got worse. Then I saw where a doctor linked some cases to celiac disease. My dermatologist said they have never heard of that and I could try going gluten free but he was very skeptical. Within a week I was down to a few small active spots. I am still gluten free but occasionally if I accidentally get fed gluten at a restaurant I will have a flare up.

Comment from: Judi, 45-54 Female (Patient) Published: August 21

I've been dealing with lichen planus for over four years now. A lesion in my mouth turned into squamous cell carcinoma and I lost four teeth and some jaw bone. It's on my arms and legs too, worse on my hands and feet. My dermatologist gave me triamcinolone cream. It worked at first but not really anymore. I've noticed that the itchiness gets worse when I eat a lot of sugar. I don't know if it will ever go away. It's embarrassing.

Comment from: Professor X, 25-34 Male (Patient) Published: July 23

As of now the lichen planus rash pretty much covers 95 percent of my body, and some places I have scratched to the point that there are extremely dark marks, it's kind of embarrassing. I can't resist the urge to scratch and it is sad my skin is being destroyed. It is hard. I know people see it at work and I have ridden the bus while my car was worked on and I know people see it. When I am invited to a pool party and I don't want to go and deal with all the questions and looks.

Comment from: Me again, 45-54 Male (Patient) Published: July 17

I do believe that my lichen planus started with a cut that I got in Walmart that wouldn't heal. About 6 to 8 weeks later the 1st patch of lichen planus appeared on my right shin. I couldn't understand why it would not heal on my shin either. I'm just saying they don't know how it starts or what triggered it. The location of where I cut myself at Walmart was such as I know other people had been nicked as well. Just saying the cut had to have had triggered something.

Comment from: Chris, 0-2 Male (Caregiver) Published: July 06

I have been treating my lichen planus as an autoimmune disease. I am following all the recommendations; green tea three 12 oz. glasses 2 in morning and 1 glass at lunch, no acidic foods, a lot of water, cook with olive oil, exercise and have a helping of raw broccoli and carrots every day. I use ranch dressing to get it down. The main thing for me is stress and I am trying to manage stress. You have to eliminate stress. Doctors seem useless when it comes to lichen planus. You have to ask for allergy test, etc.

Comment from: Linda, 55-64 Female (Patient) Published: June 19

I am a female who has had lichen planus (LP) for 32 years. The first outbreak was from elbows to wrists and knees to ankles. I went to several doctors who gave differing diagnoses. Finally I went to a dermatology center and they said lichen planus. I tried many steroid creams over the years. They all seemed to make it worse. At times it would go away on its own. About seven years ago it came back with a vengeance. Chronic for seven years! I itched so bad I was bleeding. Stress related no doubt. I went to a doctor six weeks ago. He gave more topical steroid cream. Again made it itch worse! At this point I was done with doctors and started doing research regarding other sub-clinical health issues (thyroid and blood pressure) I was given medication for that made me feel awful. I threw them away too. I started taking alpha lipoic acid and acetyl-L-Carnitine (ALCAR), an immune system booster. I also started taking Ayurvedic herbs called Ashwagandha and rhodiola (also powerful anti-stress and anti-oxidant), and turmeric. I started spraying my feet with a mix of lavender essential oil mixed with coconut oil, alpha lipoic acid and aloe vera juice. I am no longer itching! My left foot is perfect now and my right one (the bad one) is so much better! During this time I also quit smoking and a month in to my do-it-yourself treatment I also quit any alcohol. My theory is that LP being autoimmune, my body is attacking itself. I also theorized that my sub-clinical hypothyroidism was also my body attacking my thyroid. High levels of stress raise cortisol and fatigues adrenals. So my treatment plan was to get my cortisol and stress reduced. Six weeks and a vast improvement! On a side note I was going to try low dose naltrexone if my homeopathic idea was a bust. It works for psoriasis and many other ailments. So that's my story. Hope it helps someone. Caveat being if on any pharmaceuticals be aware there could be interactions with ALCAR and the herbs. You must research diligently and ask your doctor! I was not on any type of pharmaceutical for anything, nor do I have any physical ailments so I knew I would not have interactions.

SLIDESHOW

Rosacea, Acne, Shingles: Common Adult Skin Diseases See Slideshow
Comment from: Max, 55-64 Male (Patient) Published: May 22

After 10 years of Prograf (tacrolimus) immune suppression, my dentist noticed inflamed gums. Three years passed before I decided to get a biopsy done. Lichen planus was diagnosed. My liver transplant specialist had no comments to offer.

Comment from: baberuth, 55-64 Female (Patient) Published: May 16

I have had biopsies done and have a confirmed diagnosis of lichen planus. I have it everywhere. I went to many doctors and a dermatologist finally put me on Flagyl for 30 days. It all went away for a while but came back. It is not as bad as it was. I now use a great cream that took it away from my vagina. It is called halobetasol propionate cream. I also used steroids which did not help. I am still in pain in my mouth though.

Comment from: Relina, 55-64 Female (Patient) Published: April 25

I was diagnosed with lichen planus about 6 years ago. I'm not sure where it started. It may have been in my mouth. But I also had lesions on my calves, wrists, and back. It later spread to the vaginal and anus areas (that can become very painful when using the bathroom) and then to the ears. During a routine Pap, I was told it was in my vagina as well. It seems this disease goes anywhere there is skin. The only thing that seems to put it into remission (for me) is prednisone, so I've ended up taking a 4 week prednisone treatment 3 or 4 times a year to make it tolerable. I've also used creams and ointments but they only mask the problem. My mouth (gums, cheeks, tongue) is raw and bleeds when I brush. It has caused a lot of erosion on my teeth, which until this happened, were in pretty good shape (they found 12 cavities in my last checkup - most along the gum line)! I have lost a great deal of my sense of taste and can't tolerate any spicy foods as it causes great pain. I have also lost about 25 percent of my hearing in my right ear. My doctor didn't want to believe it was caused by the lichen planus at first but eventually had to admit that it was. I've been told that lichen planus will often go away, sometimes forever, sometimes returning at a later date. I wish. It has not gone away for me. It only varies by degrees of severity based on how long it's been since my last steroid treatment. I have tried taking turmeric daily but that hasn't appeared to help. If you have lichen planus and start having ear infections that don't seem to go away, don't just keep taking amoxicillin or whatever they are giving you. Ask for something to help lichen planus, like prednisone to combat it. Don't wait or you may end up with hearing loss like me!

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

Many years ago (60) my mother was diagnosed with lichen planus. My sister and I were diagnosed with it at the same time 46 years ago. My sister's son was diagnosed about 25 years ago. We were all told that the cause was a traumatic event in our lives, which was the case for all of us. I find no indication in any online medical sites that attribute the outbreak to stress or traumatic events.

Comment from: Annie, 45-54 Female (Patient) Published: February 21

I got lichen planus of skin 4 months back and the itchy rash spread all over my body. It responded very feebly to all the prescribed medicines by a dermatologist such as antihistamine pills, steroid cream, vitamin A and moisturizing cream. The suffering was so hard that I started to cry at times. The skin all over my body became hard and dark in color due to the itching. Finally I have approached a renowned homeopath. She made a patient profile after discussing with me about all my previous illnesses, stress level, etc., she agreed that it can be completely cured but will take time. For the first stage she treated me for reducing my stress by giving medicine for 1 month. Second stage treatment is for making the body fit again which I am undergoing now. So itching is 90 percent gone now.

Comment from: Larue, 45-54 Female (Patient) Published: February 16

I am on my third bout of lichen planus, this time it has been over 30 years, I am not kidding! I had it when I was seven and they put me in the hospital because they thought I had bugs under my skin, real nice for a second grader. I have it horribly on my arms and my legs are atrocious and I do get it on my torso and also in my mouth. It ended up affecting my gums so bad that I now have dentures. The doctors and dermatologists have no idea what to do with me anymore. I have had so many pills, injections and creams prescribed I just can't do it anymore. I used to avoid wearing shorts unless I had knee socks on, but now I don't care. I will wear shorts. I will wear sleeveless T-shirts. If anyone asks I just tell them I have psoriasis because I don't want to get into the explanation. If anyone has any really good remedies I would be so grateful. Otherwise keep up the fight my friends, because you are not alone!

Comment from: jbhall, 65-74 Male (Patient) Published: January 12

First I noticed rashes on my chest, forearms, and ankles. A healing scab from a cut on my shin seemed to become inflamed. Then it hit my mouth and brushing my teeth and eating become difficult. This has gradually subsided, but I still have a constant uncomfortable feeling in my mouth and slight inflammation. An itch and painful anal area is probably the most bothersome symptom, other than the ugliness of the rash on my legs that makes me reluctant to wear shorts. I have not yet seen a dermatologist about this but the first doctor I saw prescribed clobetasol for my mother (which did not seem to help) and something to put on the rash that also did little to alleviate the symptoms. The rashes are somewhat itchy but not intolerable. I was interested to read another comment which suggested that the problem started with a possible spider bite. I suffered an infected tick bite three weeks before the lichen planus outbreak. I can't help but feel there is some connection, though the doctors are skeptical.

SLIDESHOW

Rosacea, Acne, Shingles: Common Adult Skin Diseases See Slideshow
Comment from: Julian , 35-44 Male (Patient) Published: May 17

This worked for me. I had lichen planus. I am a very fit and healthy 42 year old man. It happened after I accidentally punctured my leg, below my knee on a coffee table. It wouldn't heal, then it itched insanely, then the lesions came. They appeared below my knees, mostly on my calves. I had never seen something like this in my life. Then it was in my forearms, then hands. The itching and spreading was unbearable. I tried everything. Doctors, dermatologists, anti-itch creams, oatmeal baths, meditation, but nothing worked. Some things lessened the itching, but it wouldn't go away. One day I was so desperate that I got on a tanning bed and baked myself for a long time. It didn't work. Yes, I even took a bath in bleach water. Not a good idea. I was desperate. The itching became a way of life. I was embarrassed to wear shorts or short sleeves. One thing I knew was that heat, Jacuzzis, etc., helped infuse the itch and made it worse, or more lesions developed. One late night I came across a foreign Indian website of remedies. It said to consume turmeric and milk and that it cured skin disorders. Having nothing to lose, I bought over the counter turmeric powder. I was mixing a spoonful in a cup of milk every morning and just downing it. I tried this for a couple weeks (at the same time, after a year of dealing with this, I just mentally did my best to not stress about it. I tried to purposely laugh more). At first all was the same. Two weeks in and nothing was changing. About 30 days of still doing this, the turmeric got expensive so I bought over the counter pills and just took a couple of them with milk. That's when I noticed no more lesions were emanating. The ones I had itched less. By the 2nd month they stopped. The itching stopped and finally, the lesions became scabs. It all stopped and faded. It's been 2 years. I only have scars in certain areas, but they diminished. About 5 months ago, I began itching behind my calves again. Four lesions appeared. They itched. I panicked and quickly bought turmeric pills. I reminded myself to not stress but most importantly, I did everything in my power to not scratch. This makes it worse. I took two pills in the morning again. Within a week, they dried up again, became scabs and disappeared. They quickly went away. It's been 5 months. I don't know if this works for everyone, but it's worked for me. I am not the type to share stories on blogs, etc. but I feel I owe my knowledge to others whom this might work for because I know how bad lichen planus can make one feel. The itch, pain and agony is not something I wish on anyone. Hope this helps others. Stay positive please.

Comment from: Dan, 55-64 Male (Patient) Published: April 07

After taking Harvoni treatment for hepatitis C I was cured, but as soon as I was cured I got lichen planus. Toe nails and finger nails gone, blisters in my mouth and all over my feet and shins for over a year now without 1 day of relief. Up until now I lived a good healthy life living with hepatitis C but liver wasn't damaged and never needed to see a doctor for years. Now I have been hospitalized at least 12 times with internal bleeding that happens, well, used to be every 2 months but now it has moved up to every 2 weeks. I have tried everything you people have used, but nothing has helped me. I am losing this fight just like the other 500 plus people that died from this wonder drug. Please don't take the risk, ask for something else.

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

I have oral lichen planus. I do not eat sugar, gluten or most grains. I also use something called Silvercillin from Designs for Health. You can order it on Amazon. I use the spray for my mouth (I swish and spit it out) and the gel for anything on my body that itches. Try it. It might help.

Comment from: Nat, 55-64 Female (Patient) Published: January 30

I broke my foot in November of 2015. After my cast was removed in January 2016 I noticed some lesions on my ankle. I asked my doctor about it, and he said it was just bruised and gave me some ointment to put on it. Within a month or two the lesions had spread to my other ankle and the lower parts of both legs. I started getting them on both of my arms, then they spread to my torso and my chest. Then eventually they spread to my thighs. I am thankful they have not spread to my face. I am in such agony all the time with itching. It's hard not to scratch, and I do scratch them. They are leaving scars. My dermatologist who diagnosed them as lichen planus gave me an ointment called triamcinolone acetonide ointment, but it really doesn't help. I was also prescribed cyclosporine, but it aggravated the rash. I had a full blood panel done to check for hepatitis C and other things, but they were all negative. After the period of diagnosis I was also diagnosed as type 2 diabetic. I was having a little success in them settling down and not spreading. But, I took a long trip to see my kids and grandkids (driving for 15 hours) and when I came back home, they spread 10 fold. I am at the end of my rope! I will be seeing my doctor again next week, and I am hoping to ask him to put me on disability. I am tired of people staring at me like I am some drug addict because of the way my arms look.

Comment from: J R, 35-44 Male (Patient) Published: December 30

I was diagnosed with lichen planus (LP) some years back. At that time I was doing 20 hours of exercise per week, I had changed my diet to a vegetarian one and was also doing smoothies with superfoods (goji, chlorella, spirulina, Mama, and so on). I then decided to decrease the exercise to 5 hours per week and went back to my regular diet, including beef and chicken. Within 2 or 3 months the LP went away. Not sure what happened, but I just wanted to share my story and hope it helps someone out there. I have been LP free for at least two years. Namaste.

Comment from: Duffy 439, 65-74 Female (Patient) Published: November 21

I use a cream called Calmoseptine vaginally for the itch. It will not cure lichen planus but it sure helps the itch. Your drug store can order it by the tube. I have it in my mouth too but I just stay away from anything even mildly spicy and just get used to bleeding gums. Good luck to all of you.

Comment from: Ms. Amy, 45-54 Female (Patient) Published: November 02

I was diagnosed with lichen planus in 2014 after having it for 6 months and no one could tell me what is was. I finally went to a rheumatologist and dermatologist who worked together for my treatment. I'm on Plaquenil 200 mg twice a day, for life most likely, but it stopped the lichen planus although my body is horribly scarred. At least I'm not dealing with the severe itching.

Comment from: phill, 65-74 Female (Patient) Published: September 21

In 2014 I was given a pill for a diabetes (Amaryl). Three months later I had ulcers all over my mouth colon, and vaginal area. I went to an oral surgeon, who took biopsies, and lichen planus was discovered. It has not calmed down for over two years, I have lost over 100 pounds lost muscle and feel very week. I have had every test you could have, hunting for cancer. Medical doctors do not understand the disease. I have no taste buds, and I feel like I have a mouth soaked with salt. I've lost nails, hair and it affects my sight. Because of not eating right my bowels did work correctly. And now I have hemorrhoids. I am scared to death to take any pills. I have a good dermatologist now and he has helped with the pain. He put me on steroids 10 mg for over 6 months and it has helped control the ulcers. I go to acupuncture treatments for the pain, which has taken the pain away and now I can eat most anything without it hurting.

Comment from: Suzanne, 55-64 Female (Patient) Published: September 07

About 4 years ago, my obstetrician/gynecologist said that I had lichen sclerosis around the vagina. I later went to another gynecologist who said I did not and that it is just vaginal atrophy (due to being 6 years into menopause). Over the years, I could tell something was going on with my colon and anal region because it itched and sometimes had lesions. I recently had an endoscopy and the doctor found Barrett's esophagus, an inflamed stomach and small intestine but the biopsy did not reveal cancer, H. pylori or celiac disease. I have a colonoscopy scheduled for the end of the month (September 2016). I now believe that it is all lichen planus due to the involvement of the membranes. My whole digestive tract is affected. My digestion is very slow and transit through the bowel very slow. This is all not fun and I don't want things to turn into cancer. I gave up alcohol which really hurt my stomach and diet coke as I know aspartame is toxic, and I see now potentially related to lichen planus. Thank you for providing this website to hear other's experiences.

Comment from: Daniel, Male (Patient) Published: July 18

I have had lichen planus on my body on and off for 30 years. I was prescribed prednisone for a long period of time. Please do not follow what I did as this medicine can make your bones brittle; eventually ended up destroying my hip. I have had to have hip replacement surgery at the age of 40. I would hate for this to happen to anyone else.

Comment from: Gina, 19-24 Female (Patient) Published: June 24

I've been diagnosed with lichen planus in October 2015. I have had this for 8 months. I will never ever be the same. I have never had a scar on my body before, and now I have tons. I carry it on my wrist (badly) and on my shins and ankles. A small amount on my back, and it is also on my lips (because of which I have to wear dark lip stick every day or someone will think I have something catchy like herpes). I'm more depressed then I've ever been in my life. I am currently 24 years old. I have a son and a daughter and I just found out I have one on the way. It seems to get very bad, then get better, and then it starts all over again! I've been on prednisone. It is awful. I've been on 3 different creams, and they are all awful. This is terrible. It looks like I have scabies. So I got an aloe vera plant. I cut the plants and put the liquid all over my body, and lately, it is looking great. Not as great as I want it to get, but it is definitely doing something right. Hopefully something works out. Maybe with being pregnant it will get better, who knows!

Comment from: kate, 55-64 Female (Patient) Published: April 06

After my Harvoni treatments and cure I developed lichen planus. I hate it, itches all the time. Prednisone helps.

Comment from: ngris, 35-44 Female (Patient) Published: April 01

I was diagnosed with severe nail lichen planus 2 years ago. I literally had no nails within 6 months. I was treated with steroids, Plaquenil, creams, and steroid injections in the nail bed once a month. Extremely painful. My nails all grew back so they slowly took me off the Plaquenil and creams. It's been 4 months and now it's back again with a vengeance. I've lost two nails so far with two more affected. It's now in my mouth as well. My tongue feels like I burned it every day. They put me on CellCept (immune depressant), Plaquenil, and creams again which don't seem to be working. I'm going to start steroid injections again. I'm on an autoimmune diet. I'm exhausted! I want my nails back but they say that may never happen. No one knows why this happens or what causes it. It's incredibly frustrating! I just want it to go away.

Comment from: sick of pain, 55-64 Female (Patient) Published: March 29

I have had this embarrassing problem of lichen planus for 5 or so years. I have had so many patches of white sores I can no longer taste or have an appetite. Now it doesn't burn like it did but I cry to go to the dentist it hurts so bad. My gums are so red and I also have it down in my bottom, which itches and burns. I haven't found anything that has really helped me. I miss being hungry and tasting my food.

Comment from: PDX97209, 45-54 Female (Patient) Published: March 10

I was diagnosed with lichen planus last October. It started in the summer time on my lower back and upper buttocks as dry and rough skin so I used cortisone cream on it for a few months. One day while applying it I noticed it had turned extremely dark, so I went to the dermatologist and had a biopsy of the area. I also had a rash on my left wrist and thought it was caused by an allergic reaction to the nickel on the buckle of my Fitbit but doctor believes it is also result of lichen planus. The doctor prescribed fluocinonide cream but it has not helped the area on my lower back at all. The wrist has improved. Now the last couple of weeks I'm noticing a dry flaky area around my left ear and scalp around the ear and hope that it does not cause hair loss like I have read. I do not have the itching or pain as a result so I feel somewhat lucky there. I noticed after a very stressful day yesterday dealing with a teenager I have a flare-up today around the ear.

Comment from: Fedup58, 55-64 Female (Patient) Published: December 22

I was first diagnosed with lichen planus 32 years ago, and it started on the ankles and inner wrists. Over the years I have had numerous outbreaks. I now have it in my mouth and gums, at the moment my gums around my front teeth are bleeding when I brush them or eat anything and it is so painful. I have moved area since being first diagnosed. I am taking steroid mouth rinse 4 times a day. I wonder if this bleeding is normal as I haven't had this before.

Comment from: Mareco, 55-64 Female (Patient) Published: August 27

I was diagnosed 9 months ago, but have had lichen planus for over a year now. And it is all over my body, I'm more stressed from the constant itching and the damage to my skin than the stress of my job. I have to walk around in Texas heat with long sleeves and long pants when I do go out of the house. I'm depressed and tired of being on useless steroid, shots, pills, and creams. I can't sleep and I'm miserable day and night from the itch.

Comment from: Mandy, 45-54 Female (Patient) Published: August 27

I had lichen planus on my palms, wrist and elbow crease, then it appeared on my feet, ankles and on the creases of my eye lids and around my lips. It then appeared in my mouth and made it very sore. The rash just disappeared some years later but what I found to be a relief and a miraculous clear-up, having tried all the medications, was cherry yogurt. I spread it around in my mouth for relief and a few days later my symptoms eased. I still have scarring some ten years later in my mouth but the skin cleared totally.

Comment from: Lesa, 45-54 Female (Patient) Published: August 05

I have had lichen planus for about 4 years but was just recently diagnosed. Steroid pills and cream offered little to no relief, and my allergist started me on a prescription of an immune suppressant medication called cyclosporine about 2 weeks ago. My rash is almost gone, along with the itching, and for the first time in years my skin is beginning to look normal again. Could not be happier!

Comment from: Sweetne, 35-44 Female (Patient) Published: July 08

My dermatologist did two biopsies of areas of my skin due to dark spotting on face, arms, and chest. One biopsy showed lichen planus. One showed lupus of the skin. I tried steroid shot, Plaquenil, and cream, did not work. I went to see a panel of 20 or so dermatologists who said it was one or the other. I put on sun screen all day. I put on Tri-Luma and Finacea every day and night. I still have new spotting. Dermatologist has no new suggestions.

Comment from: LP, 65-74 Female (Patient) Published: April 21

I have lichen planopilaris. No medications or treatments helped. The best thing for me was to eliminate chemicals on my scalp, e.g. shampoos, cream rinses, chlorine, and all hair products. I wash my hair with baking soda and chlorine-free water. I had a whole house water filtration system installed in my home. After doing this, my dermatologist said she had never seen my scalp look so good and that I no longer need to see her. I do take medication to minimize stress.

Comment from: lorraine, 45-54 Female (Patient) Published: February 24

I am 51 years old and during Christmas 2014 I started getting little blister like spots all over my legs ankles and feet. Doctors gave me several medications and creams but nothing worked. Finally a doctor diagnosed me with lichen planus and I am currently waiting to see a skin specialist. All my life I have grown up never getting spots so I was really worried when these started popping up and to say they are painful is an understatement. My job as a school cleaner means I am on my feet all the time and the bottom of my feet are very painful. Just recently the top of my right foot swelled up to twice its size due to an infection through my scratching which has now caused cellulitis. It is nice to know I am not alone with this condition but it has taken over my life.

Comment from: Lpool, 55-64 Female (Patient) Published: February 19

I first started with a red itchy rash on my forearms 9 years ago. It lasted a couple of weeks then disappeared. It recurred about once or twice a year for a couple of years and despite creams and lotions seemed to run its course then disappear. After a particularly bad outbreak I went to my general physician (GP) and he referred me to a dermatologist but he didn't know what it was. Every time it occurred couldn't get an appointment with him before it went. Eventually I had tests done over a week using light therapy to see if they could induce an outbreak with UVA lights thinking it was the sun. After one biopsy they said I had discoid lupus or thought it was. It then disappeared for about 2 years, in between, that dentist diagnosed lichen planus in my mouth; did they not think the two were connected! Another 9 months until I could see a different dermatologist who said that the bald patches were old and had probably occurred during previous outbreaks but I had not noticed. I was informed that the hair follicles were damaged and would not grow again. This dermatologist then said it wasn't discoid lupus, it was lichen planus (LP). I tried cream and lotions but the hair loss continues. I am now on methotrexate 5 tablets and to be honest I don't think it is doing any good. They can't bring hair back, I just want them to help me not to lose anymore but don't think they can. I am one of the lucky ones I know that at the moment I can cope with it in my mouth, and lucky I have a good head of hair and my hairdresser helps me to cover some of the bald patches, but I can't believe that worldwide there is no answer; 9 years later I am no wiser.

Comment from: VaibLP, 19-24 Male (Patient) Published: January 28

I was diagnosed with lichen planus (LP) one and half years ago, I had just graduated from college and had started working with a multinational corporation. Before I could experience my bachelor life I started developing lesions on my leg and within 2 months it got spread all over my body. As all new LP patients do, I consulted a dermatologist who prescribed me steroids, immunosuppressant and anti-inflammatory tablets, it showed great results with all lesions getting flattened and left with scars. I continued these medicines for about 8 months. After 8 months it started giving problem, I was suffering from side effects of these tablets and stopped their use. Then I read about a homeopathic clinic somewhere on online forum, I visited their clinic and started their medicine. Initially it was normal but after the effect of steroids and anti-inflammatory drugs wore off, my lesions returned with revenge. In spite of that I continued with only homeopathic medicines and it took me 4 months to finally get to see its effects with all scars fading. I have been on homeopathic medicines since 6 months and I think it is working, a little bit slower but better than steroids!

Comment from: carolyn, 45-54 Female (Patient) Published: January 23

I had lichen planus for a while. I used all the things that the doctor ordered and they made me itch more. I bought some cream in a jar called Cream Kit and mixed it with a powder named BFI antiseptic first aid powder and used it all over my body, and in one day it was gone. You can get the cream from most beauty stores, you have to order the powder. It works for all skin conditions.

Comment from: Shunny, 35-44 Female (Patient) Published: October 21

About a month and a half ago, I began seeing bumps around my waist. I begin itching constantly. My primary care doctor diagnosed me as having contact dermatitis. He gave me a steroid shot, prednisone, and a cream. I went to the clinic, got the same diagnosis, but that doctor decided to treat me for scabies. Afterwards, skin itched worse and rash spread. I then went to a dermatologist who diagnosed me with lichen planus. I have to say it is one of the most horrible afflictions I have ever had. My body is almost 100% covered with rash. It's actually on my hands and under the bottoms of my feet. I went back to the dermatologist yesterday. He said it will probably be a month before the rash heals. Ugh! I hope everyone has swift healing. This disease of the skin is horrible.

Comment from: SooBoo, 75 or over Female (Patient) Published: September 11

I developed oral lichen planus (OLP) in college, though it was not diagnosed until I was about 35. It has plagued me all these years. I had all the gold and silver removed from my teeth - no change in the OLP. I have not found any treatment that works. I have given up coffee, chocolate, and salad dressings. This summer I developed large plaques on my lower legs and ankles that itch like crazy. A dermatologist injected one of the lesions with cortisone and we are waiting to see if it does anything good! I sympathize with all the LP sufferers.

Comment from: gmbern, 45-54 Female (Patient) Published: September 04

I was diagnosed with lichen planus (LP) about 3 months ago. It has spread quickly from my wrists to my back and feet and arms. I also have psoriasis in a few places as well as hypothyroidism. I have seen numerous dermatologists and have a whole drawer full of creams, lotions, sprays, etc. I have finally grown tired of the usual route and went to an ND (naturopathic doctor). Interesting that all 3 diseases are autoimmune diseases. I am currently on a no dairy, no sugar, and no gluten diet. The thought is to work from the inside out. Not the outside in. I am keeping an open mind, because clearly the traditional route is not working. I'm only in my 2nd week of the diet. The ND said to give it 4 to 6 weeks. Then I will visit her again. Hoping to see some results then.

Comment from: 45-54 Female (Patient) Published: August 20

I had a small rash when I worked at a scrapyard. I broke my ankle on both sides and had hardware put in. I got hit by a car in the pedestrian zone at the mall before I was to get hardware out. I now have lichen planus on both feet, palms of hands, and patches on legs and body. It is debilitating and very painful. Flares up horribly with stress. I have no hepatitis or liver problems. I had all my shots. It aggravates all other conditions I had previously, high blood pressure, etc. It limits walking and other activities.

Comment from: RP, 19-24 Female (Patient) Published: July 30

I'm 21 now and have been suffering from lichen planus since I was 19. It started with my feet then vagina, lower abdomen, hands and then my scalp. Thank goodness my face was spared! I lost my hair on the regions where it occurred, due to which I had to get my hair removed. Doctor prescribed clobetasol to apply on scalp as it helps to regenerate hair roots though it helped only 50% as my scalp is still visible. I was medicated with steroids in injection and Dapsone pills. That seemed to help but because of steroids I got striae on my thighs and waist and also my face was swollen. This continued for almost 1.5 years when I was fed up with allopathic medicines. Then I started with homeopathy 6 to 7 months back from now, and it has helped but of late I'm getting rashes again on my private area from a month. What I should do I don't know, and I'm really sick of it. From 2 years I haven't been able to move out my home because of hair loss and my condition.

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

I was misdiagnosed for 2 years, told I had 'bitten the inside of my mouth', herpes, etc., until a Stanford physician got it in 5 minutes. I have had lichen planus 3 years now. All I hear is rash and mouth sores, but I get extremely fatigued, seem to need a lot more rest, and sores in my mouth. I would feel better if someone else had some of the same things going on, and we could share what helps and what does not. I get bad, yes, if stressed, so am trying to work with that. That is how I got this disease, so that has to change now. Frustrating, to say the least.

Comment from: shinobuzz, 19-24 Female (Patient) Published: June 02

It all started 11 years back when I was 13 and tried my first hair removal treatment. Before that I had mild acne issues and was following a treatment at my local dermatologist. He was continuously providing me creams and medicines but there was no amelioration. Above all, my parents and I had no clue why my "so thought eczema" wasn"t going. Two years ago I found out by another dermatologist that it was called lichen planus and was returned with the same treatment. Till today it's a nightmare for me. Itchiness and dry skin form part of my daily life and my only way to ease my pain now is just moisturizing the skin though it is very tempting to scratch.

Comment from: positive, 65-74 Female (Patient) Published: May 12

I started with a rash across my stomach. The doctor said it was possibly from some article of clothing. This was in December 2013. Within a week it had spread to my back, then on to my legs. A biopsy was taken, lichen planus came up. Cortisone cream was prescribed for me (a waste of time), also this thins the skin; not good. My rash is now fading after using a vitamin E cream for dry, itchy skin. I have cut down on alcohol, I am watching my diet, and trying very hard not to get stressed. I know, easier said than done!

Comment from: lpgehrt, 45-54 Female (Patient) Published: April 22

I was diagnosed with lichen planus 4 years ago, in my genital area, at the same time I was diagnosed with it on the inside of my cheeks and on my gums. A technician pulled me aside and said it might be helpful to use hydrogen peroxide as a mouth wash. I did this and to my surprise it helped in my mouth. Earlier this year I was diagnosed with lichen planopilaris which has caused alopecia. I wish they would find a cure!

Comment from: KATER, 55-64 Female (Patient) Published: April 16

I am female, aged 64, I am retired now from working in office setting for about 38 years. At age 48 I was diagnosed with lichen planus by the dentist, after suffering for about six years. Previous dentist said I had gingivitis. Not so. The new dentist said to take echinacea with goldenseal root, and another herb which I'm unable to recall at this time (I don't have medical records with me). Since the original cure, fast forward to today and I've developed another form of lichen planus on my wrists, forearms and ankles, also under armpits. I used echinacea with goldenseal and 3 weeks later all itching stopped. Scars on ankles, wrists, forearms, and armpits are gray or purple. Now I am looking for bleaching cream to help fade scars. By this submission, I hope others may benefit.

Comment from: HELPING, 35-44 (Patient) Published: March 26

I have been having lichen planus for over 13 years, I couldn"t understand what it was in the beginning. And now, after having a white lines inside my mouth and some white rings on my penis, I started losing hair and my nails started to get different, red spots that itch... I understand everyone out there. I would like to share my experience with you. I have made a lot of research in my country and talked to many professors. Most of the people that have this problem, are people under stress or have a problem of getting angry very quickly. Ok, here is what I got to understand from having this disease. Start With a diet for three months, where you do 1) not drink alcohol, 2) not eat citrus fruits, have no garlic, 3) not eat potatoes, rice, pasta or regular bread, 4) not eat sugar, cakes, chocolates, cola. etc., 5) have no salt at all, 6) have no oil of any kind and 7) not eat steak or any kind of meat either. The problem is that we have an imbalance in our body, and we need to re-balance it back to normal. As I mentioned 3 months and after that you need to see the results, you might need to do another 3 months. That is the price we have to pay to get back to normal. What we can eat is 1) buckwheat and dark healthy bread, 2) green vegetables raw or cooked without salt, 3) any kind of cooked meat, 4) milk products and eggs, 5) omega 3 oil or tablets, 6) everyday drink a glass of ginger cut it into slices and put into boiled water, and steeped for around 12 hours. 7) The most important thing is to avoid stress, and avoid getting angry, I do not how do you plan to do that, but you have to. 8) Getting enough sunlight is something that helps too.

Comment from: Getnold, 45-54 Male (Patient) Published: March 18

I was diagnosed with lichen planus about 15 years ago. It started as a white line on the inside of my mouth. I have good oral hygiene, have never smoked or used tobacco. I don"t drink coffee or soda. It gets kind of sore and then disappears for a while only to reappear. It also appeared on my penis as purple blotches, but thank goodness doesn"t itch. Good thing my wife knows I am not fooling around, because it looks like some kind of STD. It was gone for several years but recently came to visit. Now I have some spots on my hands. It just has to run its course, nasty as it is!

Comment from: Bay213, 65-74 Female (Patient) Published: February 24

I have been suffering, and I mean suffering, with lichen planus since November 2013. It took three dermatologists to finally get the diagnosis. I have tried every cream, steroids, and warm showers, all with little or no relief. At least I know that there are others out there. When I tell my friends that I just want to be left alone because of the rash, they have no idea how bad it is. When I do go out, all I do is scratch! I tell them to look at the online pictures so that they can understand just how bad this is. If there is anyone out there who has found some relief, please let all of us know.

Comment from: vatrekker, 65-74 Male (Patient) Published: December 30

I have been using clobetasol for over a year and it makes skin inflamed, so now use it once a day along with fluocinonide cream once a day. So far the condition has worsened and now I have been told to use it and put Saran wrap over it, and this has not worked long term either. The clobetasol does make your skin thin and that's a worse condition than the lichen planus. So basically, I'm back to square one. I have changed dermatologists to see if I can get different treatment and have appointment next month. In the meantime I am using a tea tree cream that seems to control it as much as prescribed creams.

Comment from: RichGW, 55-64 Male (Patient) Published: December 19

I started with lichen planus a couple of years ago. The NHS (National Health Service) had me eventually see a dermatologist, the fact that you are given all the weakest medication baffles me. I had to go through 9 months of scratching, sleepless nights and absolute irritability, my job hasn`t helped at all. The medication the dermatologist gave me was/is cetirizine 10mg, one tablet before I go to bed and fexofenadine 180mg tablets, one tablet in the morning. This helped, but after a week or so when I ran out of it all, it flared up again so I am on them permanently now. The best relief was having a very hot shower and burning the affected areas, I was told not to do this but it did help take it away momentarily. I now have LP in my mouth, I`ve had 2 biopsies done, one on my tongue and one on my left inside cheek, that made things difficult for a while, especially talking and eating. The consultant at the maxillofacial department gave me a prescription for tablets you put in your mouth. When I took the prescription to the pharmacy, I was told they had not been produced for 3.5 years, now I have hydrocortisone 2.5mg tablets; I have just got them so I am hoping they will help. I have a problem eating spicy food (which I love).

Comment from: Vern, 45-54 Female (Patient) Published: November 21

I was diagnosed with lichen planus about 6 months ago. I get sores on the side of my cheeks, gums, and tongue. I also have lesions on my legs, under my breasts, and also my scalp. Creams don't seem to help the itching at all. I started doxycycline about 3 months ago and that seems to help a bit. It's terrible and I salute all my fellow sufferers we deserve medals for surviving this disease.

Comment from: grannykat, 55-64 Female (Patient) Published: November 18

I was diagnosed over 30 years ago with lichen planus through a biopsy from a dermatologist. At the time, I had a blister on top of my right foot that spread up my leg to almost my knee. The same rash appeared on my left leg then on my whole body except for my face. He gave me a shot of Kenalog which at the time took care of the rash. About 2 years later, it was back. We had moved to California and went to a different doctor. He gave me steroid shots and put me in a light box about every 2 weeks. I went through this for several months with no relief. I finally called and found out what the doctor in Texas had used. After taking Kenalog again, the rash cleared up. I have had several outbreaks through the years mainly on my legs and the last couple of times on the base of my spine. Kenalog always seemed to help but has quit working for me. My last bout a new doctor gave me Clobex 0.05% lotion which has done wonders, until now. I guess I've been lucky because I've never had it in my mouth but lo and behold I have it on the inside of my cheeks now. I need to have some dental work but after reading how teeth implants seem to make it worse, I'm scared to go to the dentist. I feel everyone's pain who has this condition and can only wish for a cure.

Comment from: anamikanair, 35-44 Female (Patient) Published: October 15

I had lichen planus when I was 17 years old, just one or two at that time. Now it has come again after 20 years with severe itching, rashes and irritation on almost all parts of my body, more severe in hands and legs. I have been under steroids and antihistamines but there is no use. My body is full of scars, when I scratch fresh blood oozes out and I don't know what to do. The thing I understood is stress and lack of sleep aggravate it, so now I am working on it. I can't wear shorts and short sleeve dress due to this. After having steroids daily, there is weight increase and I also have mood swings.

Comment from: Globug, 55-64 Female (Patient) Published: October 08

I was diagnosed with oral erosive lichen planus about 8 months ago. I have my teeth cleaned every 6 months - I do not build up plaque. I have never smoked. I do not drink. I brush my teeth and floss. When I went for my last cleaning and the dentist came in to check he saw the white patches on the sides of my checks. I had a biopsy and there is no cancer. I am currently using Powell Mouthwash 2X a day. I am waiting to see if it helps with the pain and dry mouth. Some mornings it feels like my cheeks are stuck to my teeth!

Comment from: Pooky, 55-64 Female (Patient) Published: September 30

My dentist just diagnosed me with lichen planus after two medical doctors didn't know what it was. Both doctors gave me a viral cream, which didn't even touch it. When I first got this, it started with my lips swelling. Then I could feel little blisters forming on the inside bottom lip. Some formed inside my top lip as well. My bottom lip developed a deep ridge and was very raw to the point of bleeding. I was putting a triple antibiotic ointment on my lips at night hoping it would cure it. It only soothed it as did Vaseline. It lasts about three weeks when it comes. It will get better, and the ridge will go away, but it isn't gone very long when it begins again. I have to be careful and not burn my lips on hot food or beverages as this will set it off. My lips also will get very dry and don't seem to absorb any moisture from the Vaseline. The rash will also get on the outside rim of my bottom lip. There's not a cure, so the only thing I can do is to keep applying Vaseline and Blistex on my lips. Having lichen planus also affects the tip of my tongue, altering the taste of food. I have had it inside my cheek and on the side of my tongue, which is white and red with bumps.

Comment from: Vikas, 19-24 Male (Patient) Published: August 07

I am suffering from lichen planus since the year of 2012 but I relaxed and got good treatment. After that, now in 2018 the problem is again occurring. It started from the legs and covered all the body.

Comment from: jj, 65-74 Female (Patient) Published: May 29

I was prescribed prednisone for asthma and wow, not one lichen planus attack, itch, or bleed since I have started taking them.

Comment from: Poppy, 25-34 Male (Caregiver) Published: January 30

I have spot rashes all over the body because of lichen planus, very itchy and scaly. It is oozing when the scabs fall off.

Comment from: Anonimo, 25-34 Female (Patient) Published: July 20

I had had lichen planus for more than a year and I tried sprays and creams with steroid, and it healed but more still appeared on my body. Is started to use dead sea mud, no brand in particular, they all work for me and also I take sea salt baths. It helps me because it deactivates the rash. The high level of salt in the product or in the water in my bath helps me a lot.

Comment from: HealLichenPlanus, 45-54 Male (Patient) Published: August 15

I suffered with lichen planus (LP) for about 2 or 3 years and nothing allowed me to truly manage the breakouts, itching, scars and preventing it; until recently. Through trial and error I discovered how to 100 percent manage it and begin the healing journey with natural products. I am almost done with my eBook for it to be available for the public. The book contains medical observation of LP along with a chapter on my journey of healing with products I used and for what included.

Comment from: mbe, 45-54 Female (Patient) Published: September 21

I have had lichen planus for 36 years. It started at age 17 and lasted for 2 years then it went away. It came back in small patches and now at 46 it came with a vengeance all over my entire body except my face and vaginal area. I am at my wits' end because I can never be having clear skin on my arms. My legs are fine but my arms are very bad. I am itching so badly and I cannot take Benadryl every day, it will make me sleepy. It is a very bad skin condition and I wouldn't wish it on my worst enemy. I wish it would go away forever for me. I feel I had it long enough.

Comment from: doreen, 75 or over Female (Patient) Published: February 10

I have suffered with lichen planus in the mouth for the past 18 months. The following things have relieved it but not cured it: clobetasol cream, nystatin cream 2:1 ml. Dry tongue with gauze or paper towel and apply small amount on infected areas. Also, take 10 to 15 cc rinse made of 2 teaspoons baking soda added to 1 liter of filtered water, and rinse mouth for at least 1 minute then spit. Rinse 3 to 4 times a day. It really cools the mouth.

Comment from: Marcene, 65-74 Female (Patient) Published: January 28

Since August the inside of my mouth has been so dry. I have white places on my tongue and it gets real dry. It is very painful and I have had it on my ankle an inside thigh. I have had a biopsy and was told it was lichen planus. Dentist prescribed fluocinonide and then substituted it with Lidex but I am no better.

Comment from: Lilevil41, 75 or over Male (Patient) Published: December 16

I have had lichen planus since 1960 and I have never been without it only when I was on prednisone and then it is back in about a month as bad as ever. I treat it with topical creams and it helps a lot. Doctors have tried injections and lots of creams with little help, over the years.

Comment from: Alice, (Patient) Published: November 12

My primary doctor said I had scabies. I was so upset, and my husband and I went through our whole house cleaning and taking baths by the numbers. The money we spent on medicine cream and the hundreds of washing we did! My skin got so bad I went to a specialist. He took a biopsies and when it came back it showed it was lichen planus, lichenoid dermatosis. What a road trip we been on, crazy!

Comment from: Hopeless, 35-44 Female (Patient) Published: September 26

I have just found out that I have lichen planus and feeling very worried. I have had the breakout for about two months and I'm afraid for the future. I have lichen planus just about all over my body, hands and feet. The worst is I have this in my mouth too. I don't understand a lot about this but it seemed hopeless.

Comment from: Jaden, 25-34 Female (Patient) Published: July 01

I have been told by a physician that I could possibly have lichen planus. I have also been told that I have Graves' disease. I am struggling with the doctors that we have here as they have not seen a case so advanced and yet the patient is still so active. My LP has not spread beyond my ankles (but it has spread from one to both) and I have had the issue for more than four years. I realize that a topical vitamin E ointment may help; but I have yet to find one that works and is affordable.

Comment from: shenry433, 65-74 Female (Patient) Published: July 01

I was diagnosed with lichen planus 35 years ago by skin biopsy. It never went into remission. Last January saw an article about night shade vegetables being a possible cure. I was willing to try anything at that point. My lesions slowly disappeared. I have been rash free for 4 months. No more itching!

Comment from: Sandy, 45-54 Female (Patient) Published: May 21

I was diagnosed with lichen planus in 1986. I suffered for two years with purple scar-like lesions on my hands, ankles, legs and the bottom of my feet. I finally went to a civilian doctor (I was in the military) and in 20 minutes, he had his nurse inject them, and they were gone in 3 days! In 2012, I was deployed to Afghanistan and had to take malaria pills. I have noticed since then that I have chronic breakouts of rashes. They look sort of like lichen planus, in that they leave dark spots on my body for years, but the rash itself lasts perhaps 3-14 days. But, when it returns, they return in the same place, i.e. on my hand, my legs, and arms.

Comment from: Bonnie, 75 or over Female (Patient) Published: March 04

I have lost all my hair and fingernails and toe nails. I was diagnosed with lichen planus, I have the itching and dry skin, but have not experienced the rash.

Comment from: Snow, 55-64 Female (Patient) Published: December 16

I have been diagnosed with oral lichen planus about a year ago. It was under control for a long time, now it's back a little more. It's sore and it started bleeding when I put the cream on it. It seemed like a blister was there for a long time and it broke now. I'm a little nervous about why it is bleeding.

Comment from: Jean, 75 or over Female (Patient) Published: November 14

I had an ulcer on the right side of my tongue, in March 2012. Since then I have had very many sores on the tongue and inside of the cheeks. Now the inside of my cheeks have huge crater like sores. Sometimes I find my tongue so sore that I have difficulty in eating. I have lost 17kg in weight in this time. My doctor says there is nothing that can be done, and not to go back to him. This has been continuous since March 2012. Now it is November 2013. He did take a swab for a biopsy at the beginning, which proved not to be cancer. I also have terrible rash on my back, which is quite painful.

Comment from: patient, 19-24 Female (Patient) Published: November 06

My doctor diagnosed me with lichen planus in my scalp due to which I experienced hair loss. It has also spread to my back of my ears, inside the ears and my whole head. I have been using hydroxychloroquine (HCQ), as prescribed by my doctor for 3 months but there is no result.

Comment from: 55-64 Female (Patient) Published: December 16

I am 60 years old and was diagnosed with oral lichen planus when pregnant for my daughter at age 27. I still have it. When I lived in Michigan, it was very bad. I used to receive injections of cortisone into my oral lesions on each side of my tongue, which were erosive and very painful. I moved to Florida in 1993, and it improved immensely. Maybe the sun rays helped? Now I do not get it on my tongue or inside of my cheeks, but I have it on my lower lip. I usually get a flare-up now in times of stress or fatigue. It's also worse if I drink alcohol. Sometimes when I have a very bad flare-up, it is combined with thrush, which is a yeast infection in the mouth caused by a disturbance in the PH balance in your mouth. I have pills (Diflucan) to take when this happens. When it flares up on my lower lip, I use a steroid ointment prescribed by my dermatologist. There isn't really any cure. Now I have severe itching on both lower legs and am afraid it is now there. I use an OTC lotion called "Aquanil HC Lotion.” It helps a lot for the itching. My dermatologist gave it to me. I have done lots of research and the only advice I can give is to gets lots of sleep, keep your stress level as low as possible, and if it's in your mouth, don't drink alcohol or citrus juices.Good luck!

Comment from: IrishChick427, 19-24 Female (Patient) Published: November 24

I'm 22 and have had lichen planus for about two years now, although I have only known what it is for about a year. I've read that it is fairly rare for someone my age to be afflicted with it. It started as a rash on the backs of my hands, and I tried everything to get it to go away. My regular doctor prescribed me everything from oral steroids to antihistamines. It just kept coming back. I remember sitting in class and trying to hide my hands because I didn't want anyone to see it. Bright purplish spots definitely look contagious! I finally went to my dermatologist because he was my last option. I was amazed because he immediately knew what it was. He prescribed me Clobetasol cream, and it was so much better, starting the next day! I couldn't believe it! Now, I just continue using it until it is gone and then stop until it reappears. Unfortunately, long-term everyday usage can make your skin "thin," so you should stop using it as soon as the spots go away. He told me that oral contraceptives are one thing that is to blame, and stopping them usually helps symptoms, although I cannot attest to this. I will not cease taking them because I also suffer from endometriosis. I have had it on my hands, feet, legs, neck, and back. I also recently discovered I had it on my genitals (I thought it was a yeast infection, and my doctor told me otherwise) but that, thankfully, has not returned. I have a few of the brown spots on my hands, probably because that was where it persisted the longest without treatment. I also notice that it spreads on my back quickly if I itch it without noticing. I wish more primary care doctors were aware of it so it didn't take so long for most of us to get treatment.

Comment from: AZ, 35-44 Female (Patient) Published: November 10

My lichen planus started out with a bug-like bite. Within a month, it had spread in linear form between both my ankles; then it spread to the top of my right foot. My tongue had a white-patchy mucus-like coating on it that continued to spread to the inside walls of my mouth. I visited my family doctor. He had little clue and recommended me to a dermatologist. He instantly diagnosed it as lichen planus. It had also, by that time, spread to the inside wall of my labia. Needless to say, the itching was unbearable. He put me on a treatment program of prednisone, which immediately helped regardless of the sleepless side effects. I also was prescribed a cortisone cream that basically had little effect. Upon completion of this treatment (prednisone), (within a day) I was back to uncontrollable itching, and it had spread to the soles of my feet. Upon my third visit to the dermatologist, I was put back on the prednisone (feeling better and less itchy) and am waiting for light therapy. I am anxious to see some results and hoping I haven't scarred myself for life from scratching too much. I certainly feel for anyone with lichen planus.

Comment from: ASP, 45-54 Female (Patient) Published: November 04

I have had lichen planus since about age 9. It started on my ankles, lower abdomen, and lower back. I also remember my naval itching constantly. At that time, the only treatment that could be provided was a few ultraviolet light sessions. I was told to sit outside, exposing the affected area to the sun. That seemed to relieve the itching, but the spots took a long time to go away. Since that time, I have had many outbreaks: some mild, some severe. The disease has appeared on my ankles, the tops of my feet, my wrists, legs, back, abdomen, mouth, and vagina. It usually appears symmetrically on each side of my body. About 10 years ago, my dermatologist prescribed Fluocinonide Gel and Protopic ointment. They both seem to work fine in most areas to relieve the itching and speed healing, although you have to be careful using the gel in your mouth (it is not recommended) because you cannot swallow the medication. The vaginal area is also tricky because the corticosteroids can trigger a yeast infection. I am having a bout with lichens in my mouth and vaginal area due to a reaction from a medication, which I just learned can happen. I also notice that the lichens will attack an open wound. I have not been left with any noticeable scars, but I do have some slight discolorations.

Comment from: 55-64 Female (Patient) Published: October 13

I have had lichen planus for two years. It started as small blisters inside my mouth. Later I had places on the sides of my tongue and now I have places on my gums (which make them appear very red) anyone with this disease has my sympathy. I keep thinking it will go away but after two years, I am getting really frustrated. I have read about various treatments but I continue to use some cream my dentist recommended. It seems to soothe the pain, but it doesn't seem to look any better. I wonder if any of the alternative herbal medicines work. I would like to hear of any successful medication that might clear it up, or at least make it look better.

Comment from: radha, 35-44 Female (Patient) Published: May 22

I have been suffering with this skin problem of lichen planus many years, but no cure. Doctors treat me with many different medicine that damage my skin. I can't wear short clothes, it is very sad.

Comment from: Friendly22, 65-74 Female (Patient) Published: May 21

I recently discovered I had these dry patches on the inside of my mouth! My dentist told me it was lichen planus! And that there is no cure! And to stay away from harsh mouthwash and toothpaste, and anything that has color, such as cinnamon. Or Advil. I read that I should avoid alcohol and smoking; good thing I don"t do either! There does not seem to be any solutions.

Comment from: KANSINGH, 25-34 Male (Caregiver) Published: March 14

I am suffering from lichen planus for 5 months, all treatments taken as well as steroid, but got no relief. Finally I went to a homoeopathy physician and take treatment now I feel some relief. Homoeopathy physician said to me that after six month I'll become well ok.

Comment from: tb0709, 19-24 Female (Patient) Published: December 30

I was just diagnosed with lichen planus about 2 months ago. The itching is unbearable sometimes, it makes me want to cry. I have tried prednisone and clobetasol cream and neither have seemed to work.

Comment from: Peg12, 65-74 Female (Patient) Published: September 06

My lichen planus is clearing up after 3-4 years. Just suddenly, out of the blue, it is getting better bit by bit. I wake up in the mornings and check, yes, my skins and arms look better daily. I have used creams and pills to help. There is hope for all!

Comment from: Magdolin, 13-18 Female (Patient) Published: August 23

I'm 18 and I'm from Egypt and have had lichen planus for about 8 months now. I've read that it is fairly rare for someone my age to be afflicted with it. It started as a rash on the backs of my hands. I remember sitting in class and trying to hide my hands because I didn't want anyone to see it. The bright brown spots definitely look contagious! This condition started with brown spots not purplish spots like many patients. I have had it on my hands, feet, legs, neck, and back.

Comment from: dkw, 55-64 Female (Patient) Published: August 20

I have lichen planus of the scalp and have been experiencing an outbreak for about nine years now. I have taken oral steroids, steroid injections, Clobex shampoo, Clobex spray and a laser. Nothing has worked. I have just started taking plaquenil.

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