Hello @lima, welcome to Connect. I'm sorry you are struggling to find help for a treatment for your condition. I'm tagging our moderator Kanaaz @kanaazpereira to see if she can move your discussion to the following discussion so that you can meet others with similar symptoms and your post will have more visibility.

Groups > Autoimmune Diseases > Erosive oral lichen planus
-- https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Also, I saw the following clinical trial that may be of interest to you.

Mayo Clinic - Valchlor in the Treatment of Lichen Planopilaris
-- https://www.mayo.edu/research/clinical-trials/cls-20387109

John

My name is Beryl and I read your very sad email today .....we all know how horrible it is to have one of these "things" and how much suffering you have been going through....

I know if possible you will get help if you seek it from the Mayo Clinic , and you will get people in similar trouble as you trying to help you .....good luck , onwards and upwards ......Beryl

Hi @lima,

I moved your discussion Lichen Planopilaris and combined it with this existing discussion. As @johnbishop suggested, it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm glad you've connected with @beryl, and I'm confident that @ethanmcconkey @elizabethbryant @loli and others will also return with some more information that might help you.

Hi Lima, I am so sorry to hear what you are going through. I was diagnosed with lichen planus in my cheek maybe 15 years ago. Five years ago, it turned into squamous cell carcinoma. I went through surgery and radiation and have been cancer and Lichen planus free for five years. I do not know what to tell you. I will have to go on line and look into your condition to better understand it. All I can tell you, is that juicing has made me healthier. Have you checked your vitamin D levels? Just wondering I will get back to you later. Loli

So sorry you are going through this @lima. I had oral lichen planus for many years and never found the trigger or a cure until it settled on a spot on my tongue causing a cancer. Once the cancer was removed, no more lichen planus. But your variety of this condition sounds awful. Can you go back to the effective dose of cyclosporine? I don't have any advice except to keep trying to find a medical team who can offer some better solutions. I remember when I was a chronic migraine sufferer two things helped. One was seeing a neurologist who was a migraine sufferer himself. Another was emailing the editor of a migraine newsletter who had good advice on how to keep the attacks under control using minimal medication. I do hope you find some good tips here on Mayo Connect.