Lichen planus

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

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 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

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.

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?

Looking for more information for treatment of LP. and stumbled on this site. How did the rituximab help you?
Good luck and thanks
Jim