Yes. It is rare. Unfortunately I’m one of the few. I’m 78 years old and I was diagnosed 13 years ago. It remained relatively symptomless except for the white patches. 5 years ago the inflammation, redness, dryness, pain and scarring began. I have been miserable. At best it is comfortable. At worst it is torture. Initially I was prescribed triamcinalone cream which is not even used for LSV. A better dermatologist has had me on Clobatezol which has been good but I still have flares. She does not want me using it long term so has been trying other creams and ointments. I can’t remember all the names but the best is Opzelura. Only a millionaire could afford the co-pay so my doctor has been supplying me with samples. The doctor prescribed Otezla to hit it internally. The side effects kept me from remaining on it. Occasionally she mentions methotrexate. I resist that because if side effects. All that being said I find Aquaphora Ointment to give relief. Because of comments on this blog I just ordered Strata MGT from Amazon. I know nothing about it but I’ll try anything.
I wish the best options for anyone suffering this dreaded disease.