Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: radha, 35-44 Female (Patient) Published: May 22

I have been suffering with this skin problem of lichen planus many years, but no cure. Doctors treat me with many different medicine that damage my skin. I can't wear short clothes, it is very sad.

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Comment from: Sandy, 45-54 Female (Patient) Published: May 21

I was diagnosed with lichen planus in 1986. I suffered for two years with purple scar-like lesions on my hands, ankles, legs and the bottom of my feet. I finally went to a civilian doctor (I was in the military) and in 20 minutes, he had his nurse inject them, and they were gone in 3 days! In 2012, I was deployed to Afghanistan and had to take malaria pills. I have noticed since then that I have chronic breakouts of rashes. They look sort of like lichen planus, in that they leave dark spots on my body for years, but the rash itself lasts perhaps 3-14 days. But, when it returns, they return in the same place, i.e. on my hand, my legs, and arms.

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Comment from: Friendly22, 65-74 Female (Patient) Published: May 21

I recently discovered I had these dry patches on the inside of my mouth! My dentist told me it was lichen planus! And that there is no cure! And to stay away from harsh mouthwash and toothpaste, and anything that has color, such as cinnamon. Or Advil. I read that I should avoid alcohol and smoking; good thing I don"t do either! There does not seem to be any solutions.

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Comment from: Getnold, 45-54 Male (Patient) Published: March 18

I was diagnosed with lichen planus about 15 years ago. It started as a white line on the inside of my mouth. I have good oral hygiene, have never smoked or used tobacco. I don"t drink coffee or soda. It gets kind of sore and then disappears for a while only to reappear. It also appeared on my penis as purple blotches, but thank goodness doesn"t itch. Good thing my wife knows I am not fooling around, because it looks like some kind of STD. It was gone for several years but recently came to visit. Now I have some spots on my hands. It just has to run its course, nasty as it is!

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Comment from: Bay213, 65-74 Female (Patient) Published: February 24

I have been suffering, and I mean suffering, with lichen planus since November 2013. It took three dermatologists to finally get the diagnosis. I have tried every cream, steroids, and warm showers, all with little or no relief. At least I know that there are others out there. When I tell my friends that I just want to be left alone because of the rash, they have no idea how bad it is. When I do go out, all I do is scratch! I tell them to look at the online pictures so that they can understand just how bad this is. If there is anyone out there who has found some relief, please let all of us know.

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Comment from: vatrekker, 65-74 Male (Patient) Published: December 30

I have been using clobetasol for over a year and it makes skin inflamed, so now use it once a day along with fluocinonide cream once a day. So far the condition has worsened and now I have been told to use it and put Saran wrap over it, and this has not worked long term either. The clobetasol does make your skin thin and that's a worse condition than the lichen planus. So basically, I'm back to square one. I have changed dermatologists to see if I can get different treatment and have appointment next month. In the meantime I am using a tea tree cream that seems to control it as much as prescribed creams.

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Comment from: RichGW, 55-64 Male (Patient) Published: December 19

I started with lichen planus a couple of years ago. The NHS (National Health Service) had me eventually see a dermatologist, the fact that you are given all the weakest medication baffles me. I had to go through 9 months of scratching, sleepless nights and absolute irritability, my job hasn`t helped at all. The medication the dermatologist gave me was/is cetirizine 10mg, one tablet before I go to bed and fexofenadine 180mg tablets, one tablet in the morning. This helped, but after a week or so when I ran out of it all, it flared up again so I am on them permanently now. The best relief was having a very hot shower and burning the affected areas, I was told not to do this but it did help take it away momentarily. I now have LP in my mouth, I`ve had 2 biopsies done, one on my tongue and one on my left inside cheek, that made things difficult for a while, especially talking and eating. The consultant at the maxillofacial department gave me a prescription for tablets you put in your mouth. When I took the prescription to the pharmacy, I was told they had not been produced for 3.5 years, now I have hydrocortisone 2.5mg tablets; I have just got them so I am hoping they will help. I have a problem eating spicy food (which I love).

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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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