Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

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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Comment from: Vern, 45-54 Female (Patient) Published: November 21

I was diagnosed with lichen planus about 6 months ago. I get sores on the side of my cheeks, gums, and tongue. I also have lesions on my legs, under my breasts, and also my scalp. Creams don't seem to help the itching at all. I started doxycycline about 3 months ago and that seems to help a bit. It's terrible and I salute all my fellow sufferers we deserve medals for surviving this disease.

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Comment from: grannykat, 55-64 Female (Patient) Published: November 18

I was diagnosed over 30 years ago with lichen planus through a biopsy from a dermatologist. At the time, I had a blister on top of my right foot that spread up my leg to almost my knee. The same rash appeared on my left leg then on my whole body except for my face. He gave me a shot of Kenalog which at the time took care of the rash. About 2 years later, it was back. We had moved to California and went to a different doctor. He gave me steroid shots and put me in a light box about every 2 weeks. I went through this for several months with no relief. I finally called and found out what the doctor in Texas had used. After taking Kenalog again, the rash cleared up. I have had several outbreaks through the years mainly on my legs and the last couple of times on the base of my spine. Kenalog always seemed to help but has quit working for me. My last bout a new doctor gave me Clobex 0.05% lotion which has done wonders, until now. I guess I've been lucky because I've never had it in my mouth but lo and behold I have it on the inside of my cheeks now. I need to have some dental work but after reading how teeth implants seem to make it worse, I'm scared to go to the dentist. I feel everyone's pain who has this condition and can only wish for a cure.

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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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