Patient Comments: Lichen Planus - Symptoms and Signs

What were the symptoms and signs of your lichen planus?

Comment from: Tulip65, 45-54 Female (Patient) Published: October 25

I was diagnosed with Oral Lichen Planus in 2009 after first noticing changes to my ventral tongue for about a year or longer. This article is wrong in stating that lichen planus does not have any long lasting ill effects. Lichen Planus of the skin is not usually a concern in the long run but there is a 15% chance of oral lichen planus developing into oral cancer. I was one of those 15%. I was followed every 3 months after my dx of Lichen Planus in 2009 by an Oral Cancer Screening Clinic and in Sept 2011 my last biopsy was + for SCC. In Oct 2011 I had a Co2 Laser Glossectomy to remove the tumor. Please if you have oral lichen planus you NEED to be assessed regularly by an oral surgeon, ENT or your dentist. Advocate for yourself and do NOT hesitate if you notice ANY changes or have pain. I am a 46 year old live long nonsmoker, occasional social drinker and am HPV-.

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Comment from: knis, 45-54 Female (Patient) Published: October 05

I just found out I have lichen planus and it stinks, although I have had it for more than ten years, and how I found out was through a nurse that I was talking to one day after cna classes. We were talking about other problems and it came up in conversation and her dentist had told her that is what she had, even though lichen planus is very painful at least I know I'm not by myself. To everyone out there who has this, my heart and prayers go out to you.

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Comment from: Holly, 75 or over Female Published: September 08

I have had Lichen Planus for over a year. It began on my tongue which was very painful and became erosive. It has since infected cheeks and lips and gums. In viewing your website yesterday I read that it is sometimes related to the use of Quinine which I have taken regularly at bedtime for 3 years for severe night time cramping. It appears I must decide which of the two is the worst, night cramps or oral Lichen Planus. I shall try and wean myself of Quinine. Thanks for the information.

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Comment from: sidneynsw1, 45-54 Female Published: August 17

After finally being diagnosed with lichen planus (I had it in my mouth and vagina) and after seeing countless doctors being told there is no cure I finally found a doctor (dermatologist). That has helped me. He put me on 2 tablets Deptran10 and Plaquenil Tablets 200mg. It has cleared my vagina and my mouth although at the moment, it has returned to my mouth He has adjusted the dosage which again has cleared. I hope this helps someone.

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Comment from: heididoll, 35-44 Female (Patient) Published: April 12

I am 42, female, married w/two children. I have had Lichen Planus since the mid 90's. It first started as a little spot on the top of my right foot and because it itched so bad I would scratch it until it would bleed but it felt so good to scratch. A few years later it started to show up on my ankle then a year later it showed up on my left ankle and now the outer side of my legs but below my knee. I also am getting spots on my elbows and wrist. I also have oral Lichen Planus that makes my gums swell and bleed when brushed. I agree that stress makes it worse. I quit drinking alcohol over a year ago since I noticed that it made my legs swell which made them itch like crazy. I can't give up caffeine but I'm sure that doesn't help either. I have other health issues but can't seem to link them to the Lichen Planus. I really feel bad for anyone who has to experience this horrible disease. I don't wear sandals, shorts or short sleeve shirts, not because my skin looks so bad (it does) but because the sun makes it worse. It took several trips to the Dermo to figure out what I had and then a biopsy to confirm. My dentist took one look at my mouth and told me what I had. I have not experienced one medication that helps at all. I feel your pain.

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Comment from: Elizabeth, 45-54 Female (Patient) Published: March 09

I have had outbreaks over the years and stress seems to make it worse along with salt and spices. I currently have it the worst ever in my mouth. The sores are so deep that I can feel my jaw bone, and eating is difficult. I'm noticing dark patches on my lips and the skin darkening around my mouth. I'm not sure if this is related and not sure how long it will last. Most outbreaks in the past lasted several months. This has been going on for about five months.

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Comment from: 75 or over Female (Patient) Published: May 21

I have been diagnosed with lichen planus of my oral cavity, about 20 years ago by my dentist. Symptoms are sore gums with white spots in my mouth. At this time, I still have it.

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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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