Patient Comments: Lichen Planus - Symptoms and Signs

What were the symptoms and signs of your lichen planus?

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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Comment from: 35-44 Female (Patient) Published: January 26

I have just been diagnosed with lichen planopilaris. My scalp hurts and is very itchy and has some bumpiness. They did a biopsy to diagnose it. I am learning that I might also lose my hair with this condition, which disturbs me greatly. I wish there were more information about this rare form of the disease, but I do not see much out there.

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Comment from: fancy, 55-64 Female (Patient) Published: March 20

About a year ago I had some dental work. Eight of my upper teeth received caps. Soon after that, white patches appeared on my tongue and inside my cheeks. My dentist told me it's lichen planus. I've been reading up on this and found out that an allergic reaction to dental materials can cause this. Has anyone else had this problem after dental work?

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Comment from: too many problems, 55-64 Female (Patient) Published: October 18

I was diagnosed with lichen planus about 2 years ago but went to many doctors before a dentist told me to go to a dental university. That is 2 hours each way for me. I had biopsy on my mouth and also had problems with my vagina. I went to another doctor for my vagina both biopsy were positive for lichen planus. My mouth had bad lesions on my upper gums and the pain from intercourse during intercourse is unbearable. So now I have two different Doctors and now I am breaking out on my wrist, forearms and shins. I need one doctor who could take care of all my breakout areas instead of three. I also have fibromyalgia and lupus, I am 63 years old.

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Patient Comments

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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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