Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: Nat, 55-64 Female (Patient) Published: January 30

I broke my foot in November of 2015. After my cast was removed in January 2016 I noticed some lesions on my ankle. I asked my doctor about it, and he said it was just bruised and gave me some ointment to put on it. Within a month or two the lesions had spread to my other ankle and the lower parts of both legs. I started getting them on both of my arms, then they spread to my torso and my chest. Then eventually they spread to my thighs. I am thankful they have not spread to my face. I am in such agony all the time with itching. It's hard not to scratch, and I do scratch them. They are leaving scars. My dermatologist who diagnosed them as lichen planus gave me an ointment called triamcinolone acetonide ointment, but it really doesn't help. I was also prescribed cyclosporine, but it aggravated the rash. I had a full blood panel done to check for hepatitis C and other things, but they were all negative. After the period of diagnosis I was also diagnosed as type 2 diabetic. I was having a little success in them settling down and not spreading. But, I took a long trip to see my kids and grandkids (driving for 15 hours) and when I came back home, they spread 10 fold. I am at the end of my rope! I will be seeing my doctor again next week, and I am hoping to ask him to put me on disability. I am tired of people staring at me like I am some drug addict because of the way my arms look.

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Comment from: J R, 35-44 Male (Patient) Published: December 30

I was diagnosed with lichen planus (LP) some years back. At that time I was doing 20 hours of exercise per week, I had changed my diet to a vegetarian one and was also doing smoothies with superfoods (goji, chlorella, spirulina, Mama, and so on). I then decided to decrease the exercise to 5 hours per week and went back to my regular diet, including beef and chicken. Within 2 or 3 months the LP went away. Not sure what happened, but I just wanted to share my story and hope it helps someone out there. I have been LP free for at least two years. Namaste.

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Comment from: Duffy 439, 65-74 Female (Patient) Published: November 21

I use a cream called Calmoseptine vaginally for the itch. It will not cure lichen planus but it sure helps the itch. Your drug store can order it by the tube. I have it in my mouth too but I just stay away from anything even mildly spicy and just get used to bleeding gums. Good luck to all of you.

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Comment from: Ms. Amy, 45-54 Female (Patient) Published: November 02

I was diagnosed with lichen planus in 2014 after having it for 6 months and no one could tell me what is was. I finally went to a rheumatologist and dermatologist who worked together for my treatment. I'm on Plaquenil 200 mg twice a day, for life most likely, but it stopped the lichen planus although my body is horribly scarred. At least I'm not dealing with the severe itching.

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Comment from: phill, 65-74 Female (Patient) Published: September 21

In 2014 I was given a pill for a diabetes (Amaryl). Three months later I had ulcers all over my mouth colon, and vaginal area. I went to an oral surgeon, who took biopsies, and lichen planus was discovered. It has not calmed down for over two years, I have lost over 100 pounds lost muscle and feel very week. I have had every test you could have, hunting for cancer. Medical doctors do not understand the disease. I have no taste buds, and I feel like I have a mouth soaked with salt. I've lost nails, hair and it affects my sight. Because of not eating right my bowels did work correctly. And now I have hemorrhoids. I am scared to death to take any pills. I have a good dermatologist now and he has helped with the pain. He put me on steroids 10 mg for over 6 months and it has helped control the ulcers. I go to acupuncture treatments for the pain, which has taken the pain away and now I can eat most anything without it hurting.

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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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