Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

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.

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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.

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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.

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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!

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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.

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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.

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Patient Comments

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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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