Lichen planus

Sorry to hear what your going throughI was diagnosed with lichen planus in February of 2022. What worked for me after several months was Clobetasol cream. It started to heal about several weeks after but could feel relief as weeks went by now all I have are scars. Thank God! On Dec16 2022 I went through major surgery and because of the anesthesia steroids antibiotics and whatever more I ve had a breakout in my mouth. It is excruciating it’s everywhere in my mouth my teeth are throbbing I had a molar taken out this past week and another next week because the pain is unbearable once this thing hits your roots and nerves it’s excruciating. I spoke to my dentist about removing my teeth. I started rinsing my mouth with chamomile flower resin Whole Foods they have it the brand is teabags it’s in a brown bag use one cup water boil it to 212 degrees turn off poor in cup put in bag and let it sit for 3-5 minutes. Let this cool room temp and rinse a few times with it take the tea bag as is with some liquid on it put in a zip lock and put it in freezer to get really cold or frozen and put it in your mouth. It’s considered to be anti inflammatory antiseptic and calming to the skin and nerves . It has helped me very much. It actually soothes the pain a bit. Don’t eat crunchy stuff hot salty spicey no soda light on the caffeine and after you eat it’s imperative to keep mouth clean brush and rinse with chamomile and let that soak into your lesions for about 30-45 minutes. Drink lots of water . I just started using tríamcinolone acetonide 0.1% paste in my mouth it applies as a thin film it will then turn to a paste and attach to your mouth and that where it’s starts doing it’s job I use it every 6 hrs not good or liquid after for a least two hrs it’s best right before your go to bed cause it sits there all night till next application. I always brush them rinse again with chamomile before next application so all the old paste is removed and New paste does it’s job. I hope you feel better. This is a life condition unfortunately you will get better but you will have flare ups oh acidic things is a no no I love pickles but that ship has sailed for me.

Licen planus. What causes?

Welcome @elizabeth6. I moved your question about the causes of lichen planus to this existing discussion so you can connect with others managing lichen planus:
- Lichen planus: https://connect.mayoclinic.org/discussion/lichen-planus-2da636/?commentsorder=newest#chv4-comment-stream-header

According to Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/lichen-planus/symptoms-causes/syc-20351378), lichen planus occurs when your immune system attacks cells of the skin or mucous membranes. It's not clear why this abnormal immune response happens. The condition isn't contagious.

Lichen planus can be triggered by:
- Hepatitis C infection
- Flu vaccine
- Certain pigments, chemicals and metals
- Pain relievers, such as ibuprofen (Advil, Motrin IB, others) and naproxen (Aleve, others)
- Certain medications for heart disease, high blood pressure or arthritis

Where have the signs of lichen planus appeared for you? How long have you had this?

I have had Oral LP for over 8 years. Seen numerous top specialists in NYC and Boston. I hear over and over, there is NO CURE. And there does not seem to be any treatment except steroids. These are only a temporary fix. Someone needs to research this!

I agree!!!!! I have Esophageal Lichen Planus which is incredibly rare! It's terrible!!! I also have it in my mouth and at times in my skin. It's so hard to eat. I've lost 30lbs. in the last few months. I truly feel for you!

I have Esophageal Lichen Planus which is incredibly rare. There are approximately twenty cases of Esophageal Lichen Planus reported in the medical literature! I would like to do what I can to initiate research on this. I would love to connect with someone suffering with ELP.

Hi Sadea and Jshdma,

I don't have ELP. I do have autoimmune disease, which seems to cause ELP in some patients.
I am NOT a medical professional, so I have hesitated to write this post. It's been on my mind, though, because you folks are really suffering and no one has relief for you.

Ask your doctors about applying "gentian violet" to your mouth sores. I don't know if it will help, but this is why I am suggesting it:

There might be a scientific reason that it would work. My pediatrician recommended gentian violet for infants (!) with thrush, which is a yeast infection in the mouth. Lichen is a yeast-alga combination, so maybe the gentian violet would work on the yeast part of the lichen and give you some relief.

Gentian violet is a really, really old fashioned remedy-- one that folks used before fancy medications and antibiotics for all kinds of icky sores and cuts and stuff. My pediatrician probably did his medical training in the 1940s. So, depending on their age, your doctors may never even have heard of it as a possible treatment of the mouth sores you have described.

My pediatrician was still in practice when my sisters and I had children! (God bless him!) At his recommendation, we all used gentian violet for our babies when they got thrush, which was pretty common among breast-fed babies, of that era at least. When my daughter was born, he had taken on a new, young associate who prescribed an oral med for my baby's thrush. I used 2 courses of it, and it didn't stop the thrush! Then my pediatrician (the older, boss- doc) told me to use gentian violet. One application-- yes, one!-- cured her thrush.

I haven't looked for it for years, but gentian violet is a purple liquid that used to come in a small brown bottle. We put a very little bit on a Q-tip, and spread it around the inside of the baby's cheeks. It permanently stains everything it touches, so be careful if the doctor says you can use it. The permanent stains might be part of the reason that mothers stopped using it!

I don't know if it stings or if it tastes bad. The babies couldn't tell us, but all of them did cry.

Let me say again that I am NOT a medical professional. Since we used it in the mouths of newborns, it seems like it must be pretty safe. But please check with a doctor before trying it.

I really hope you can get some relief! Let us know if it works. Good luck and blessings to you!

@annewoodmayo did the baby’s mouth turn purple permanently after using the gentian violet?

Not permanently.

She's 36 years old now so it's hard to remember. Her mouth was purple at least overnight., but I can't remember how long it lasted. I don't think it was very long or I would remember probably.

She didn't have teeth or dentures or caps or anything in her mouth, like an adult has, that might stain.

I was diagnosed with LP in 2020, but have been dealing with this disease much longer. By the time I was diagnosed I had no finger nails on my right hand and most of my toenails were gone too. My feet had blisters and lesions and the typical "lacing" especially on my feet. The condition always gets bad in the winter months but this year was especially bad.
My dermatologist tried the JAK inhibitor, Cibinco (spelling? ) and after 6 weeks I saw some improvement. The Dr tried to get my insurance company to approve this drug for me but it was declined. All the progess that had been made to that time reversed and my condition became worse. The Dr tried to get pre authorization for Renvoq and it was initially declined.
Before starting the JAK inhibitors I had blood tests taken. At the end of the 6 weeks of Cibinco my cholesterol jumped 50 points and my white blood cells plummeted.
The costs of both drugs ($10,500 for 30 days of Cibinco and $6700 for 30 days of Renvoq) were offset by the drug companies savings program. My monthly copay for Renvoq is $5. But there are also programs through the drug companies where you can get a $15,000 voucher to offset the costs of the drug.
I went to another dermatologist and he gave me an additional diagnosis of atopic dermatitis in addition to the LP that is now in my mouth.
Has anyone else been prescribed this course of drugs to help with LP? I am 74 and the Dr said Renvoq is typically prescribed for patients 45 and under. Thank you