Patient Comments: Lichen Planus - Prognosis

Question:

Discuss your experience with lichen planus. Have you had any recurrences? Submit Your Comment

Comment from: Ginger, 65-74 Female (Patient) Published: March 08

In 2014 I lost both of my sisters and then had some marriage problems, and with all the emotional things going on I developed lichen planus. My back and chest are covered. I itch all the time. I did us a cream and it helped but now it is back starting to spread again. I am just not sure what to do.

Comment from: MHL, 65-74 Female (Patient) Published: February 03

I first had lichen planus when my body was under severe trauma from broken bones and it lasted 9 months although the scarring lasted longer. It went of its own accord, then it recurred six years later, again I was under extreme stress. I use lidocaine only as no other creams seem to work. Again I went into remission after 9 months. I say remission because you never get rid of it. As an aside I had a frozen shoulder before each bout, and vertical ridges on my nails.

Comment from: Little Lulu, 65-74 Female (Patient) Published: July 15

My lichen planus has an emotional trigger, apparently. It first appeared at age 18 months, and stayed active for 16 years, reappearing 2 years later, for another 16. Gone for 7 years. Doctors wondered what that was. No diagnosis until age 55. I'm 72 now, treating it with prescribed steroid ointment for 10 years off and on, it's worse and deeper than ever, and has started on my fingernails in the last year.

Comment from: Cono Ipsaro, 55-64 Male (Patient) Published: November 26

I noticed skin lesions earlier this summer on my hands. Originally I thought they were scratches from working out in the yard. I then started noticing them on different area, forearm, wrist, ankle, etc. The dermatologist did the biopsy to determine it was lichen planus (LP). Apparently at this point it sounds like I do not have it as bad as some others. Mine is not itchy but it does look horrible. Small red bumps with a distinct center point like the nucleus of a cell. Some appear as small blisters that eventually break open. Once open they take about a week or two to heal to where there is a scar. I am a long time hepatitis C carrier and suspect that this is a result. I have no other explanation. I am healthy and very active without a care in the world other than hepatitis C. On December 4th I am going to start my fifth attempt at hepatitis C treatment. The current medications available have more of a success rate without any of the nasty side effects from previous medications. The drug is Harvoni. Once I start I am hoping that along with a cure for the hepatitis I will get relief from the LP.

Comment from: notlichenit, 45-54 Male (Patient) Published: November 11

When I was in my twenties I developed the lichen planus skin rash on my wrists, ankles and penis. Within a year or so it went away and I thought that was the end of it. Then about 7 or 8 years ago one, then two of my fingernails began to get discolored and striated. I went to a dermatologist and was told to try a steroid cream which he said may not do anything, and it didn't. Now 9 of my fingernails and all my toenails are nasty. Waiting for what will happen next.

Comment from: Evelyn, 75 or over Female (Patient) Published: November 12

I have had lichen planus in my hair. And since it was not diagnosed early enough I lost patches of hair that will not grow back.

Comment from: swill, 55-64 Female (Patient) Published: January 10

I have had lichen planus for approximately 4 years. After the initial breakout was under control I was left with sores that itch and won't heal. I use, under my dermatologist's care, triamcinolone acetonide cream for maintenance. The initial breakdown was atrocious. Now I find new blisters on my shoulder, which indicates another breakout. The thought of starting over with a whole new breakout is awful.

Comment from: cat, 55-64 Female (Patient) Published: December 30

I have had lichens planus for over 7 years in the vaginal area. It is chronic. My husband and I have not been able to have intercourse because it is just too painful. I am constantly sore, red and the itching is overwhelming. No physician has found a treatment that works for me. My dermatologist sends me to my gynecologist. My gynecologist sends me back to the dermatologist. No one wants my case. I am miserable.

Comment from: GERT, 65-74 Female (Patient) Published: December 19

I have recently, about a year ago, been diagnosed with genital lichen planus, which is being treated with clobetasol ointment. Sometimes the area is more irritated than other times, the ointment working part-time it seems. (I have no itching, thankfully.) Also I have some bumps on my lower back, though not causing me any real problem. Today I had an appointment with my dentist because I noticed lesions/sensitivity in my lower jaw area. I had hoped it wasn't this planus stuff, but apparently it is! (I need to mention that I have been under stress a year ago taking care of a very cantankerous 95 year old mother.) As a ten year old child I had very large boils for over a year's time. I am wondering if there could be a relationship between the boils and the lichen planus.

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Comment from: aruna, 45-54 Female (Patient) Published: December 13

I noticed hair fall in patches 15 years ago. My doctor diagnosed it as alopecia areata and started treatment. It didn't help much. Then after a few years I developed red vaginal mucosa with occasional cuts which was causing pain. No diagnosis could be made. Then I developed breast cancer 5 years ago and underwent radical surgery. It was ER, PR (estrogen receptor, progesterone receptor) negative ductal carcinoma. I underwent vulvar colposcopic biopsy which came out as lichenoid vulvitis. Now I have gums which are painful. Steroid cream doesn't help.

Comment from: Twink, 55-64 Female (Patient) Published: August 14

I have had oral and genital lichen planus for many years. The following protocols have been helpful for me. Oral antihistamine like Claritin, Derma E Stop itch cream, Aquaphor and aloe gel. The creams heal, moisturize, and alleviate the itch. Also try airing your crotch at night wearing night gowns, it also seems to be helpful. I tried many things especially cortisone creams which really didn't help. It's a very annoying condition. Good luck and keep trying different things.

Comment from: a patient, 55-64 Female (Patient) Published: July 02

I've had erosive lichen planus for 32 years. It is extensive, severely painful, and involves all the mucosa areas (an ear, esophagus, etc.). There doesn't seem to be a good treatment that effectively controls pain without severe side effects.

Comment from: ss14024, 35-44 Female (Patient) Published: October 08

I have lichen planus on my calves, back and front. I have had it for years and it won't go away. I went to two different dermatologists but all they gave me was creams that didn't work. They don't know how to treat it. The summer heat makes it worse. I got off my allergy shots and I think that helped a bit.

Comment from: vip, 19-24 Female (Patient) Published: August 12

I am suffering this problem almost from 7 yrs. My affected parts are my legs n my lower back. I feel very shamed of having this problem. I have taken several medicines and ointments, but it all waste. I want to be cure soon.

Comment from: birbeck, 55-64 Male (Patient) Published: June 19

I have lichen planus. Most cases of lichen planus go away by themselves in a few years, but I am among the few that have had it for decades.

Comment from: lew lew, 45-54 Female (Patient) Published: May 09

I'm 49 years old and was just diagnosed with lichen planus. I am scared to death. It is taking everything in my body to stay calm for my boyfriend and my daughter. I don't want them to think I'm contagious. Even though I told them it's not, my daughter is scared and doesn't want to lie down in the bed and just talk anymore. This feels terrible. I have read lots about this illness. Why me? Don't I have everything else – why this, now? I know I am not dying, but it surely feels like this inside. I will continue to write so I can feel better. I know there are others who know and understand what I am feeling.

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