Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: kate, 55-64 Female (Patient) Published: April 06

After my Harvoni treatments and cure I developed lichen planus. I hate it, itches all the time. Prednisone helps.

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Comment from: ngris, 35-44 Female (Patient) Published: April 01

I was diagnosed with severe nail lichen planus 2 years ago. I literally had no nails within 6 months. I was treated with steroids, Plaquenil, creams, and steroid injections in the nail bed once a month. Extremely painful. My nails all grew back so they slowly took me off the Plaquenil and creams. It's been 4 months and now it's back again with a vengeance. I've lost two nails so far with two more affected. It's now in my mouth as well. My tongue feels like I burned it every day. They put me on CellCept (immune depressant), Plaquenil, and creams again which don't seem to be working. I'm going to start steroid injections again. I'm on an autoimmune diet. I'm exhausted! I want my nails back but they say that may never happen. No one knows why this happens or what causes it. It's incredibly frustrating! I just want it to go away.

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Comment from: sick of pain, 55-64 Female (Patient) Published: March 29

I have had this embarrassing problem of lichen planus for 5 or so years. I have had so many patches of white sores I can no longer taste or have an appetite. Now it doesn't burn like it did but I cry to go to the dentist it hurts so bad. My gums are so red and I also have it down in my bottom, which itches and burns. I haven't found anything that has really helped me. I miss being hungry and tasting my food.

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Comment from: PDX97209, 45-54 Female (Patient) Published: March 10

I was diagnosed with lichen planus last October. It started in the summer time on my lower back and upper buttocks as dry and rough skin so I used cortisone cream on it for a few months. One day while applying it I noticed it had turned extremely dark, so I went to the dermatologist and had a biopsy of the area. I also had a rash on my left wrist and thought it was caused by an allergic reaction to the nickel on the buckle of my Fitbit but doctor believes it is also result of lichen planus. The doctor prescribed fluocinonide cream but it has not helped the area on my lower back at all. The wrist has improved. Now the last couple of weeks I'm noticing a dry flaky area around my left ear and scalp around the ear and hope that it does not cause hair loss like I have read. I do not have the itching or pain as a result so I feel somewhat lucky there. I noticed after a very stressful day yesterday dealing with a teenager I have a flare-up today around the ear.

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Comment from: Fedup58, 55-64 Female (Patient) Published: December 22

I was first diagnosed with lichen planus 32 years ago, and it started on the ankles and inner wrists. Over the years I have had numerous outbreaks. I now have it in my mouth and gums, at the moment my gums around my front teeth are bleeding when I brush them or eat anything and it is so painful. I have moved area since being first diagnosed. I am taking steroid mouth rinse 4 times a day. I wonder if this bleeding is normal as I haven't had this before.

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Comment from: Mareco, 55-64 Female (Patient) Published: August 27

I was diagnosed 9 months ago, but have had lichen planus for over a year now. And it is all over my body, I'm more stressed from the constant itching and the damage to my skin than the stress of my job. I have to walk around in Texas heat with long sleeves and long pants when I do go out of the house. I'm depressed and tired of being on useless steroid, shots, pills, and creams. I can't sleep and I'm miserable day and night from the itch.

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Comment from: Mandy, 45-54 Female (Patient) Published: August 27

I had lichen planus on my palms, wrist and elbow crease, then it appeared on my feet, ankles and on the creases of my eye lids and around my lips. It then appeared in my mouth and made it very sore. The rash just disappeared some years later but what I found to be a relief and a miraculous clear-up, having tried all the medications, was cherry yogurt. I spread it around in my mouth for relief and a few days later my symptoms eased. I still have scarring some ten years later in my mouth but the skin cleared totally.

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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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