Patient Comments: Lichen Planus - Symptoms and Signs

What were the symptoms and signs of your lichen planus?

Comment from: laniecss, 55-64 Female (Patient) Published: September 26

I was diagnosed with lichen planus pilaris in my mid 30's , 20 years ago. I also had lichen planus, white patchy streaks in my cheeks which were quite painful. I would tell the dentist at that time in the late 1970's. He thought that I had early signs of oral cancer from smoking cigarettes. I did immediately quit smoking. When I was in my mid 30's I developed a rash on my forehead which looked like a sunburn that peeled. I also had a rash on my forearms and lower back, and small clusters of little bumps. I also had pimple like lesions on my pelvic area surrounding my pubic hair. I also lost the hair on my mid shins and forearms. Next I noticed my hair thinning and then it fell out in large circles. I eventually found a dermatologist in Boston who diagnosed it as lichen planus. I had a biopsy of my back and scalp and was told it was most likely lichen planus at a 99% rate of certainty. I was told it was a self limiting disease. It has subsided but I have lost large patches of my hair. I was treated topically with Clobetosol drops for my scalp and I also had Kenolog Injections when it flares up. It came back again in my mid 50's, but not as bad. I now am going to try doxycycline, and may try plaquenil if i have no side effects. I now wear a hair piece of natural hair that clips in with my own hair. This is made me much happier and less self conscious.

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Comment from: Janet1400, 55-64 Female (Patient) Published: July 06

I have had lichen planus since 1999. The first time I broke out on my legs and progressively got worse. I went to doctor and did a biopsy. I have it about every two years. I have it know and this is the worst case I have ever had. I have it on my legs, under arms, around the breasts, around navel and also have a toenail that has left a ridge in it.

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Comment from: DavidB, 45-54 Male (Patient) Published: April 23

I have had lichen planus for about 5 years. It started on my lower lip as white plaque, like molting skin. It kept progressing after a biopsy confirmed lichen planus. A dermatologist used a variety of topical ointments, but the lichen planus kept spreading across my lower lip and ulcerating. I had to stop spicy foods. Ultimately a tumor developed, which was frozen off. About 8 months later the tumor came back. This was 2010, after three years with lichen planus. A tumor biopsy revealed squamous cell carcinoma, and it was removed by Mohs surgery, with beautiful results. Unfortunately, the surgeon missed some cells and the lower lip and lymph nodes in my neck became cancerous within a year. I have had about 3/4 of my lower lip removed and replaced with a flap from my upper lip, and 80 lymph nodes in my neck removed. There is still a patch of LP growing back on the corner of my mouth where the bulk of my original lower lip remains. Now, I've been doing lots of research and ran across low dose naltrexone as a treatment for autoimmune diseases, and in particular MS. But it also shows promise for other autoimmune diseases. I am trying to convince my family doctor to prescribe low dose naltrexone. Both surgeon and oncologist concur that it can't hurt. I want to get rid of this lichen planus so the cancer doesn't take the rest of my lip! Best regards to all.

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Comment from: Tracey, 45-54 Female (Patient) Published: April 19

Linear Lichen Planus, started on my left foot as if I had scratched it on a thorn. It began to thicken and widen and itch a little. Then a dry patch on the top of my left thigh rapidly grew into the now familiar bumps and it spread faster than I could have imagined. I was diagnosed but the treatment was not effective enough. I went for second opinion and had a biopsy. It has since spread across the top of my vagina on the left, up the right side of my body, on both inside arms, and on the outside of my breasts. It does not itch, but it sure does make you feel so self-conscious. Thank you to all those who wrote in here as I will definitely make sure to keep a check on my mouth as well. I am convinced it started as a stress related disease, recently 'acquired' a new boss and 'it' is hell.

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Comment from: mjof, 45-54 Female (Patient) Published: January 06

I have had lichen planus for 12 years. I have it on my back, and under breast (open blister). Red spots turn brown and legs look covered flea bites.

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Comment from: LichenPlanusFemale, 25-34 Female (Patient) Published: April 05

I'm now 31 yrs old, but can remember having a small linear skin irritation right on my groin area next to the outer/right labia when I was a young child. It was pink and periodically got itchy, and then would peel. As I grew older, the irritation persisted, and another one started forming along my right labia (almost perpendicular to the original one). It was pink bumps that became dry and itchy, and then would peel off, upon scratching. I would use Vaseline to alleviate these symptoms, but never really sought a dermatologist's help, until I was about 22. She had misdiagnosed it. She first treated it with a topical corticosteroid ointment, which helped, but I think I took it for too long, as the skin became slightly hyperpigmented and also the area adjacent to the lesion was slightly depressed. Today, she numbed and cauterized the lesions, and in 2 days I'll then reapply Elidel, and see if that can prevent the lesions from forming again. It's important to note that this condition doesn't go away and then return. It's persistent and chronic. I've had it for as long as I can remember.

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Lichen Planus - Describe Your Experience Question: Please describe your experience with 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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