Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: a patient, 55-64 Female (Patient) Published: July 02

I got my first oral lesion in 1981, two months after getting married. I knew what it was because I have close relatives with it! Doctors told me it doesn't run in families (it runs in mine), I was wearing my jeans too tight, I didn't know what I was talking about (when I told them what a close relative was being treated with, etc. As time progressed I have been seen by some of the top doctors in the country for this disease over the years, including the University of Michigan, Walter Reed Army Medical Center, University of San Francisco Health Center, to name a few. I have been biopsied several times (except for the ear) in all the locations I have it and have had the diagnosis confirmed. I now have the disease on my lips, my tongue, along the gum lines, on the inside cheeks, in my right ear (rare), in my esophagus, vaginally, rectally, and have had one brief bout externally on my wrists. I have been given every treatment prescribed so far to include Accutane, Amevieve, Plaquenil, Methotrexate, hydrocortisone shots, topical steroids, Prednisone, Medrol Dosepaks, etc. and the treatments only reduce the symptoms and pain for a very short time. The LP seems to progress after treatment with steroids...just saying. I have to have my throat dilated 1 or 2 times per year to resolve throat scarring issues and had vaginal lesions cut open many times. I concurrently cannot open my mouth wide enough to say "ah" for a doctor's exam, nor put pieces of food in my mouth larger than a nickel due to scarring in the back of my mouth. I can only take tiny pills, so many medicines both over the counter and prescribed are off-limit for me, especially time-release ones. But liquid medicines and vitamins burn my mouth tissue too much to handle and "gummy vitamins" stick to the tender gums and make everything worse. I must cool all my foods because I have a greatly reduced number of papillae (we think of them as taste buds), and when when my tongue/gums flare, I cannot eat fruits, raw vegetables, meat/poultry, any spices, no hot drinks (only tepid ones), and on bad days have to stick to a liquid diet. There are days that even drinking water burns the tissue like crazy. I have now had this disease over 32 years and am currently experiencing a painful flareup. There have been times the pain is so bad on my tongue that swallowing is excruciating and I have contemplated suicide. I have been on a liquid diet for a week this time because I can't bear the pain of eating solid food. However, -It is NOT contagious or my poor husband would have it by now. -I have never been diagnosed with cancer either in my mouth or esophagus and I don't worry about it. -Crest makes a Bubble Gum flavored toothpaste for children that I have used for years with no problem. -I can used watered down non-alcohol based mouth wash for those days when my breath is so bad I can't take it. -I use a straw to drink orange juice when I desperately crave some because it takes the liquid to the back of my mouth past the worst of my pain. -I've reached the point where I can call my doctor and get a quick Medrol Dosepak for fast relief without needing an extensive office visit/exam or undergo long-term steroid use. -My family is educated on the disease so when I am flaring badly and can barely talk, they know to give me space, and let me eat alone so I can take my time. -Humor helps, as does exercise for stress, prayer for support, and an antidepressant for dealing with depression about the disease. My prayers for those of you dealing with this disease. It is not an easy road and sometimes it can feel like you are the only person in the world with this problem!

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Comment from: overtired6222, 65-74 Female (Patient) Published: May 30

I have had lichen planus since I was 39 years old. I am now 72. It was only on my legs and arms. I tried everything – I went to a dermatologist and he gave me medication. It started going away, but then came back. He gave me a shot – I'm not sure what it was – that cleared it up. Now I have a little on the back of my leg. I take Clobex, which helps to clear it up.

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Comment from: ouch, 55-64 Female (Patient) Published: May 28

I have had this for about six years. It started with a purple spot on the back of my legs; no itching or pain. Then the sores developed in my mouth. It was so painful I couldn't even eat or drink without putting numbing med all over my mouth, which made food taste bad. My liver numbers are up, which scares me. I have the white lacy patch over my cheeks. It makes dental work painful – my tongue is sore and now I can't even feel it from scar tissue. This horrible condition is also on my privates, which doesn't hurt but itches quite a bit. I've tried cortisone washes and creams, which don't help. I'm also on antibiotics now for another infection and have noticed my mouth has healed. Maybe this will be the ticket. I no longer can have spicy foods. There are very few foods I can eat, which sucks. I worry about the effects of this disease on my liver. I also have Barrett's esophagus and wonder if this is all related.

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Comment from: Blondie, 45-54 Female (Patient) Published: December 16

I have had oral lichen planus for two years and was diagnosed four months ago. I have tried hormones, and oral kenalog without any relief. I am in a bout that has been going on for almost four months. The pain in my gums and tip of my tongue is constantly throbbing. I have suffered bone and gum loss. It started out as oral thrush and began in my cheeks as well. I cannot find anything that offers relief or calms my gums/tongue.

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Lichen Planus - Symptoms and Signs Question: What were the symptoms and signs of your lichen planus?
Lichen Planus - Diagnosis Question: What types of tests or exams led to a diagnosis of lichen planus?
Lichen Planus - Treatment Question: What forms of medical treatment, including medication, did you receive for lichen planus?
Lichen Planus - Prognosis Question: Discuss your experience with lichen planus. Have you had any recurrences?

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