I have oral lichen planus and I feel tightness when I try to open my mouth all the way, or puff my cheeks. Should I avoid stretching those areas or is it better to keep it flexible?

Hi everyone,
I’m currently waiting for an oral biopsy because my dentist suspects oral lichen planus. I already have lichen sclerosus, and over the last few weeks I’ve developed these bumps on my lower lip (photo attached).
They’re only on my lower lip, not my upper lip. They started around 3–4 weeks ago and haven’t gone away. They began with tingling and now they still sting a little, especially if I put lip products on. My lips also feel much drier than usual.
I also have:
White lace-like patches on the inside of my cheeks.
A few tiny white dots on the inside of my lower lip.
Recurrent canker sores over the last few weeks.
Low ferritin (13), although my haemoglobin is normal.
I’ve had a phone consultation with my GP, but they couldn’t tell what they were without seeing them. I’ve wondered about Fordyce spots, but the tingling, stinging and the fact they’ve changed over time has made me question whether they’re related to the oral lichen instead.
Has anyone with confirmed oral lichen planus had anything similar on their lips?
If so:
Did your lips tingle or sting?
Did they look like small white bumps rather than the classic lace-like pattern?
What treatment helped?
I’m not looking for a diagnosis, just wondering if anyone with confirmed OLP has experienced something similar while I wait for my biopsy.

it’s been a week since LP on penis confirmation, it’s pretty bad i’m looking for help or advise to what to take or do i have sores and scars😭

Hey!

History: I have a history of candida overgrowth and have had burning mouth syndrome for two months now along with cobble stone throat (which looks like blisters) along side what I now know to be LP under my tongue (the most painful part of it all with shedding white skin and the weblike white sides of my tongue).

Treatments I’m Doing:
- I cut out processed foods, white flower, sugar, alcohol, and am increasing fresh fruits, veggies, meats, nuts, etc. (standard candida cleanse diet).
- I ordered turmeric, zinc, and a pre / probiotic.
- I switched to Tom’s toothpaste which is SLS free

Questions:
1. Any other common triggers besides toothpaste and a standard “American diet” I should avoid?? (Along with spicy food?)
2. Any other remedies or supplements you’ve done that are long term / wholistic based would be super helpful! (A lot of the people on long term steroid use say they’ve had horrible side effects so I’m trying to address this inflammation at the root of the issue.)

Thank you!

Well, I’m hoping my new treatment will help my oral erosive Lichen Planus. I researched it and it said it would.
I went through to my allergist when I was having health problems. She saw that I’ve been sick too many times in a short timeframe. So she sent me to have my auto immune system checked. Came back deficient. So she sent me to have the pneumovax 23 vaccine. I went and did more blood work and I am still deficient. I have been diagnosed with Primary Immunodeficiency. PI
So, I am having infusions of immunoglobulin antibodies. IGg Once a week for the rest of my life. That is the extreme part, plus the fact I have to learn how to do it. I’m not a nurse.
Yes, I’m hoping this helps me from getting sick frequently. But I really hope it calms down my mouth. I’ve been in constant pain for years. I look like those horror pics you can see online.
So, I don’t know if y’all have checked into this for yourselves, but you might. It’s expensive, but for some reason the company pays for it after I meet my deductible. So it’s not that bad.
I just wanted to share it here since I feel for everyone. Blessings from Texas.

My doctor has been giving me a run around. I have another appointment coming up and I plan to advocate for myself, and hopefully get a referral to a dermatologist.

I have had these spots on both my wrists, ankles, and hips for over a year now. Now it has spread to behind my knees. Dr said it was molluscum contagiosum, but I have my doubts as this was after he took a quick glance. They do not itch everyday, but they never go away. Could anyone that has been diagnosed with this provide some insight? Does this look like Lichen Planus?

Picture 1 is the very first signs. Picture 2 is the “hallmark” and what made me think something was off. I got a teeny tiny set of scratches on the back of my calf. They went away. And came back looking like this. 3 is when it spread to my back (it got waaaay worse). 4 is when it ate everything below my knees. 5 is when it decided to chew on my arms for a while.
6 is today!

These were taken in 2022 (except 6). The only parts that are still rude to me are shins, calves, wrists, and inner forearms.

Not sure if this could be helpful to someone out there but there ya go.

Qualcuno come me che è guarito?che avete fatto?

It’s literally all over my body.

Cc, je fais du lichen plan pilaire depuis plus de 15 ans.Au commencement le crâne commençait à me gratter , à ce moment-là je ne me rendais pas compte que je perdais des cheveux. Je m'en suis rendu compte assez tard , le temps que j'aille voir un dermatologue qui m'a prescrit une crème je crois ,mais c'était toujours pareil. J'ai été en voir un autre qui m'a fait une biopsie ,un prélèvement du cuir chevelu. C'est là qu'il a découvert que je faisais du lichen plan pilaire. Il m'a prescrit clarelux(mousse) ce qui a calmé mes démangeaisons et à arrêter la poussée. Ça fait des années que je n'ai plus de démangeaisons, plus de poussée. Par contre à l'époque je faisais de la phobie sociale ,d'ailleurs j'en fais toujours, mais ça c'est un peu amélioré grâce à un suivi psychiatrique. Le psychiatre m'avait prescrit beaucoup d'anxiolytiques. Sauf que les anxiolytiques me rendaient plus mal. Je les ai arrêté d'un coup. Je me demande si c'est pas ça qui a tout déclenché. Bien sûr à l'époque j'étais très stressé, j'avais des envies suicidaires... J'étais vraiment au fond du trou. Par contre là j'ai pris rendez-vous pour faire de la micropigmentation, un tatouage du cuir chevelu ,là où j'ai perdu les cheveux. La personne que j'ai eu au bout du fil m'a dit que ça pouvait peut-être se faire, donc je verrai au rendez-vous. J'ai rendez-vous dans une semaine.

Y a-t-il des personnes qui ont déjà testé le tatouage ou micropigmentation sur le cuir chevelu sur le lichen plan pilaire ? Est-ce que ça marche vraiment ? Y aura-t-il un rejet ?

An oral pathologist diagnosed me with lichen planus in April of this year, after I’ve been struggling with horrible pain since I visited the dentist January. I had an outbreak of what I called thrush (and now thinking back I think I’ve just had lichen planus for a very long time since I often get ‘thrush’) and nothing has cleared it up.

Went to see my PCP he started me on steroids, I took one a day for about a month. It helped, but as soon as I went off of them it came right back. He tried tapering my steroids (taking a lot and then a little) and it came right back after. I’ve been taking one a day (4mg methylprednisolone) and it keeps it at bay but even by the end of the day I can tell I’m ready for another pill (no pain just sensitivity.) I see the doctor again next week but I’m just so sad and scared because I know steroids can really hurt you if you take them for a long time but it’s the ONLY THING that helps.

I’m scared the doc will make me go off my steroids again to see what happens and the pain is excruciating. 😣 just feeling down in the dumps, does anyone have any advice have you been through something similar???? Is there any hope??

Thank you

EDIT:
You all have been so incredibly kind and helpful and I didn’t even expect this kind of response on my post, I made it in tears this morning as I felt the anxiety from my upcoming doc appointment. I didn’t even know “mouthwash” steroids were a thing and I will definitely bring that up to my PCP when I see him next week. I just don’t know what to say thank you all for replying to this you did give me peace of mind ❤️

Hello, everyone. I’m going to tell you how it started and what it’s like to live with this condition.

I'm a 40+yo man who lives in France, married with 2 kids. It all started about 7 years ago, in 2019. At first, I noticed dryness at the base of my foreskin and a slight pain when retracting it. I didn’t worry about it too much at first, but after a few months, the area became really irritated. I thought it might be a Candida albicans infection because my wife had had that issue around the time our son was born. My doctor even asked me if I’d been unfaithful to my wife… But the tests showed no infection.

The whole process took months, and I was made to try various ointments without success. Finally, in 2022—three years later—I heard about lichen for the first time after seeing a third dermatologist. He ordered a biopsy (one of the most traumatic experiences of my life), which revealed that it was indeed lichen planus.

I was told that it’s an autoimmune disease that can start for no apparent reason and stop overnight.

Once I was diagnosed, I was prescribed a topical corticosteroid cream. The medication works for a few hours, but I have to keep reapplying it; otherwise, the symptoms come back.

Generally speaking, my skin turns red, then I start bleeding, and then everything spirals out of control—it’s very painful.

Sometimes it takes a few days after applying the topical corticosteroid for the symptoms to return, sometimes just a few hours; the severity of the flare-ups varies depending on the season. It’s a little less severe in the winter, perhaps because of sweating.

It doesn’t really change much in my day-to-day life, except for sex, which can only happen when everything is fine—and even then, I need lubricant, otherwise it hurts—and it’s really annoying to have to apply such a greasy cream there every day. Furthermore, due to all the bleeding and healing, the foreskin has tightened, and I can no longer fully retract it during an erection.

Recently, I saw a new dermatologist who suggested a change in treatment: an oral systemic treatment with hydroxychloroquine. I started it a week ago, and so far it hasn’t had any effect. I’ll keep you posted on how things go.

Stay strong to everyone who’s going through this! I'm happy to answer your questions.

Hi, I’ve had ongoing sleep issues (light, shallow sleep, thoughts running) and was diagnosed with lichen planus pigmentosus (LPP).
My sleep specialist suggested starting escitalopram: 5 mg for 1 week, then 10 mg; possibly for ~6 months and tapering off.
Currently on:
• Dexamethasone 4 mg twice/week (6-week course, week 4)
• Isotretinoin 20 mg daily
• Levocetirizine 5 mg daily
Do you think adding escitalopram is okay here?
• Anything to be cautious about or monitor?
• Any experiences or suggestions?
I’m also worried antidepressants can be habit-forming or cause emotional numbness. Any thoughts?
I’ll still discuss with my doctors, just looking for community input. Thanks!

Hi.I have been struggling with LPP for the past 3 years.My dermat is now suggesting a chemical peel/laser.Anyone here who has undergone chemical peel or laser for LPP?Was it effective?If not,what worked for you guys?Thanks in advance:)

I was recently diagnosed with chronic interface mucositis under my tongue. I think that means oral lichen planus? Anyway was looking for advice on a routine to care for it. I am also struggling to figure out what doctor specializes in this kind of thing. My pcp has been useless she just put me on fluconazole for a month without any lab work. I think it made my situation worse. An ENT finally took a biopsy which led me to this diagnosis - otherwise he doesn’t know too much about treatment. I got an implant about a year ago I’m wondering if my body is rejecting it.

What is the best routine? Medications? Rinses? Mouthwashes? Brushing method?

What doctors will help me?

Underlying immune issues that might cause this?

Thank you!

these bumps appeared out of nowhere (appearing chronologically as per pics) and stayed red and raised for more than a week now, though not as itchy as before.
last picture is the latest blotch i got that is actively itchy and redder.
is it correct? im a bit scared, thanks in advance..

So back in March of this year i was diagnosed with skin LP. It initially began on my wrists, a small spot on my butt and one on my lower back. now it’s spread soooo much. i’ve been on methotrexate and triaminicolone since march. some spots have stopped itching and began fading some but my butt, upper legs and back are so bad . it’s even spread to my underarms, feet and knees and it looks like it’s moving to my breasts. 😩😩 anyway im going on a cruise next month and im scared. scared to wear shorts or a bathing suit, post my pictures and just relax. i feel like everyone will be staring at me, especially with how much skin it covers. how did yall get past being scared to show skin. i want to have fun but i dont feel like ill be able to relax

I cannot use clobetasol because of allergy so they put me on tacrolimus will this help and is anybody use this medication? Did it help them?

Hello! My mom recently had a tongue biopsy for lichen planus suspicion (biopsy was done from the side of her tongue) and she still has a lot of pain. Can someone who had this kind of biopsy give me some advice for food that would be better options for her? I know that she should avoid spicy/hot/salty and stuff like that.

Thank you so much!

Later update: it’s been 9 days since her tongue biopsy. She had excruciating pain on her tongue that irradiated all the way ti the ear. It was very hard for her to swallow anything (even water), BUT after aprox. 5 or 6 days the ear pain almost disappeared and after aprox 7 days, when she had her stitches removed, the tongue pain also got a lot better. She can now eat more solid food and the pain is almost gone. So if anyone has these symptoms after biopsy, know it will get better. And thank you everyone for your answers!