Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: KATER, 55-64 Female (Patient) Published: April 16

I am female, aged 64, I am retired now from working in office setting for about 38 years. At age 48 I was diagnosed with lichen planus by the dentist, after suffering for about six years. Previous dentist said I had gingivitis. Not so. The new dentist said to take echinacea with goldenseal root, and another herb which I'm unable to recall at this time (I don't have medical records with me). Since the original cure, fast forward to today and I've developed another form of lichen planus on my wrists, forearms and ankles, also under armpits. I used echinacea with goldenseal and 3 weeks later all itching stopped. Scars on ankles, wrists, forearms, and armpits are gray or purple. Now I am looking for bleaching cream to help fade scars. By this submission, I hope others may benefit.

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Comment from: HELPING, 35-44 (Patient) Published: March 26

I have been having lichen planus for over 13 years, I couldn"t understand what it was in the beginning. And now, after having a white lines inside my mouth and some white rings on my penis, I started losing hair and my nails started to get different, red spots that itch... I understand everyone out there. I would like to share my experience with you. I have made a lot of research in my country and talked to many professors. Most of the people that have this problem, are people under stress or have a problem of getting angry very quickly. Ok, here is what I got to understand from having this disease. Start With a diet for three months, where you do 1) not drink alcohol, 2) not eat citrus fruits, have no garlic, 3) not eat potatoes, rice, pasta or regular bread, 4) not eat sugar, cakes, chocolates, cola. etc., 5) have no salt at all, 6) have no oil of any kind and 7) not eat steak or any kind of meat either. The problem is that we have an imbalance in our body, and we need to re-balance it back to normal. As I mentioned 3 months and after that you need to see the results, you might need to do another 3 months. That is the price we have to pay to get back to normal. What we can eat is 1) buckwheat and dark healthy bread, 2) green vegetables raw or cooked without salt, 3) any kind of cooked meat, 4) milk products and eggs, 5) omega 3 oil or tablets, 6) everyday drink a glass of ginger cut it into slices and put into boiled water, and steeped for around 12 hours. 7) The most important thing is to avoid stress, and avoid getting angry, I do not how do you plan to do that, but you have to. 8) Getting enough sunlight is something that helps too.

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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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Patient Comments

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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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