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Lichen planus

Posted by firelady @firelady, Sep 2, 2012

I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It is very , very painful. I had a very large back surgery in April and I got lichen planus sores on my back as a result of the trauma from surgery my incision that is twenty inches long healed but my sores from lichen planus are still open. I don't know how to get them to heal and right now I have just developed an outbreak in my mouth. The pain is so deep in the nerves that I feel like my teeth are going to explode and I can feel my pulse under my teeth. I can't explain the pain and I am begging for someone to tell me if they found anything that helps with the pain. Also I never heard of lichen planus , what can I expect from this disease? How often will I have outbreaks? will it ever go away? Should I have my teeth pulled out or will dentures make it even worse? Not too many doctors seem to know much if anything about this auto imune disease.

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Profile picture for Becky, Volunteer Mentor
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 5 9:29pm
In reply to @victoriasalami "Hi LP Suffers, Hoping to share what I think worked for me because I understand how..." + (show)
Profile picture for victoriasalami @victoriasalami

Hi LP Suffers,

Hoping to share what I think worked for me because I understand how difficult this has been. I’m still not sure what’s triggering my LP. I’m fixated on season allergens in Georgia (which I never experienced before), tide laundry detergent, and potentially dust mites as a cause.

Skin Lichen Planus recently plagued my life in November 2024. It has been miserable. A real hell. After itching for about 2 months straight, with a dry scaly rash that wouldn’t stop spreading. I got a biopsy that revealed I had LP of the skin. Immediately overwhelmed by the news and learning about the incurable nature of LP, I begin to feel hopeless about treatment options. The dermatologist prescribed a topical steroid, that I was NOT about to take on an ongoing basis because topical steroid withdrawal is equally a pain in the ass. I’m also not a fan of treating symptoms.

So, I started reading. Thank god for the internet.

First thing I did was immediately, stop scratching to get the immune reaction under control. Rubbing has a better outcome now.

Stop showering so often until the rash clears.

I started taking 3 supplements. I was not expecting this to work, but it is!

- Vitafusion: B12 Vitamin
- Nature’s Bounty: Women’s Multi- Vitamin w/ Collagen
- Target Brand: Turmeric

A doctor online did also give Purslane a high recommendation, but my rashes started going away before I took 1 dosage of purslane pills.

I hope this helps someone somewhere! God bless!

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@victoriasalami Thank you for all your helpful tips! And you’re a newbi on Mayo Clinic Connect, Welcome! It’s always nice to have new people join the discussion! I hope you’ll stick around with more helpful tips!
If I may ask, how did you find MayoClinicConnect ?

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sondrachristo1 | @sondrachristo1 | Mar 6 11:33am
In reply to @becsbuddy "@victoriasalami Thank you for all your helpful tips! And you’re a newbi on Mayo Clinic Connect,..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@victoriasalami Thank you for all your helpful tips! And you’re a newbi on Mayo Clinic Connect, Welcome! It’s always nice to have new people join the discussion! I hope you’ll stick around with more helpful tips!
If I may ask, how did you find MayoClinicConnect ?

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Hi, anyone dealing with lichen plano pilarus?

I was diagnosed 4 years ago.

Basically it’s lichen planus but of the scalp. The hair follicles are destroyed by the immune system attacking them.

I’ve lost more than 50% of my hair. When it’s flaring, my scalp burns so bad I can’t comb my hair.

I refused to take any of the treatments. For me the cure was worse than the disease.

I do use a helmet that emits red laser light therapy. This does help.

Just wondering if anyone has any suggestions.

Thanks

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nana2005 | @nana2005 | Sep 7 6:23pm

I was recently diagnosed with erosive lichen planus. It took me a over a year before someone could diagnose my condition. I thought I was going to go crazy. Fortunately, I was referred to the University of Indiana School of Dentistry in Indianopolis and they were able to diagnose it. While I realize the condition will not go away, my doctor at UI assured me she could help me manage it. I live in Illinois and it was certainly worth making the trip!

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marymad | @marymad | Sep 8 6:51pm
In reply to @nana2005 "I was recently diagnosed with erosive lichen planus. It took me a over a year before..." + (show)
Profile picture for nana2005 @nana2005

I was recently diagnosed with erosive lichen planus. It took me a over a year before someone could diagnose my condition. I thought I was going to go crazy. Fortunately, I was referred to the University of Indiana School of Dentistry in Indianopolis and they were able to diagnose it. While I realize the condition will not go away, my doctor at UI assured me she could help me manage it. I live in Illinois and it was certainly worth making the trip!

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Keep researching the possible triggers of your ELP and treatment options. I discovered the connection between my ELP and my Rx for occasional heart palpitations... metoprolol. I discussed it with my primary physician who had put me on it years ago, and he agreed that I could gradually reduce the dose until I was off it. As a result, the lesions on my back, which I've had for years, have cleared up 90%. And even by oral lesions have improved.

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nana2005 | @nana2005 | Sep 8 8:09pm
In reply to @marymad "Keep researching the possible triggers of your ELP and treatment options. I discovered the connection between..." + (show)
Profile picture for marymad @marymad

Keep researching the possible triggers of your ELP and treatment options. I discovered the connection between my ELP and my Rx for occasional heart palpitations... metoprolol. I discussed it with my primary physician who had put me on it years ago, and he agreed that I could gradually reduce the dose until I was off it. As a result, the lesions on my back, which I've had for years, have cleared up 90%. And even by oral lesions have improved.

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Thank you, marymad. I am also on metoprolol. I will discuss this with my physician.

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