Patient Comments: Lichen Planus - Describe Your Experience

Please describe your experience with lichen planus.

Comment from: Daniel, Male (Patient) Published: July 18

I have had lichen planus on my body on and off for 30 years. I was prescribed prednisone for a long period of time. Please do not follow what I did as this medicine can make your bones brittle; eventually ended up destroying my hip. I have had to have hip replacement surgery at the age of 40. I would hate for this to happen to anyone else.

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Comment from: Gina, 19-24 Female (Patient) Published: June 24

I've been diagnosed with lichen planus in October 2015. I have had this for 8 months. I will never ever be the same. I have never had a scar on my body before, and now I have tons. I carry it on my wrist (badly) and on my shins and ankles. A small amount on my back, and it is also on my lips (because of which I have to wear dark lip stick every day or someone will think I have something catchy like herpes). I'm more depressed then I've ever been in my life. I am currently 24 years old. I have a son and a daughter and I just found out I have one on the way. It seems to get very bad, then get better, and then it starts all over again! I've been on prednisone. It is awful. I've been on 3 different creams, and they are all awful. This is terrible. It looks like I have scabies. So I got an aloe vera plant. I cut the plants and put the liquid all over my body, and lately, it is looking great. Not as great as I want it to get, but it is definitely doing something right. Hopefully something works out. Maybe with being pregnant it will get better, who knows!

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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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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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