Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

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.

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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.

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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.

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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.

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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!

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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.

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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.

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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!

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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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