Lichen planus

I have ELP. So far, I have had 18 EGD's and esophageal dilations due to severe stricturization of the esophagus. It took me 18 years to get diagnosed, because it is so rare. My new doctor at U of MI hospital says there are about 80 cases in the world, and he specializes in ELP. There is no cure for it. It made me deaf. Took away my sense o of smell and taste. It ate my hair down to the skull, started to erode the bone between the sinus cavity and the cranial vault. It affected my fingernails and toenails. I had blisters and lesions all over my legs. It also affected my breathing and grew polyps in my sinus requiring surgery. However, immunosuppresants help, but can have serious side effects. Cellcept curbed my ELP, but made me diabetic, cranked my blood pressure, gave me acid diarrhea, etc. I was taken off of it, but it arrested my ELP from 2018- 2023. I am now using Olumniant since January. It's helping. Less side effects. But immunosuppressants seem to take a long time for them to work with ELP, but so far I am pleased. Work of caution. Despite self distancing for years, I somehow caught an infection. It paralyzed me and I was rushed to the hospital. It required leg surgery. I was told I had had a septic infection, probably due to the immunosuppressant. I started gaining a tremendous amount of weight. 20 lbs a month. That' was they told me that I have acute heart failure, but they don't know what caused it, but the hospital had not caught it earlier because they didn't check the heart during the infection. Up to then, I had had a history of having a strong heart.

@klschepp Welcome to Mayo Clinic Connect! I certainly hope that you will find the help here that you need. You are in a very difficult situation and insurance only wants to make it more difficult. I had the same problem when a doctor ordered rituximab. It was denied but the doctor persisted. I was finally given the OK and the drug company, Genentech, paid for it out of their charity fund. You might check with the drug company to see if they have some funds for patients who can’t afford their prices. The next time it was denied because the coding was wrong.
I’m sure you will hear from members soon.
If I may ask, how did you find Mayo Connect?

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

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.

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

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!

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.

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 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!

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?