Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

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.

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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.

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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.

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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!

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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: 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.

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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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