I am sorry you have been diagnosed with Lichen Scletosis.

I have had Lichen Planus and Sclerosis for over 35 years. It started in the
soft tissue of my mouth, I have had it Vaginally for almost as long. I now
have skin issues that leave large brown spots, mostly on my legs! I have
had many treatments but most effective was the systematic Prednisone but I
cannot tolerate that now!

I use topical Clobetasol Propionate Cream on my skin lesions, mouth
lesions, and external Vaginal Tissues, two weeks on/ two weeks off treating
up to 4 times a day. Off treatments I use once a day. It has managed the
pain most of the time.

Once a month require shots of small dose prednisone into the inside of my
cheeks. As a rope like lesion continues to be swollen and most painful
unless treated. Which can affect eating.

This disease has less medical interest because we are a small population
about 2% of the total has our autoimmune disease. Doctors and dentists who
have family members that have this Autoimmune Disease have been most
helpful to me. I was taken off of all dairy products 1 year ago (avoiding
all dairy and dairy protean) 99% of my skin lesions have stopped.

I take Hydroxichloquine and Celcept but the Celcept is causing me great
gastro issues so will likely no longer take that.

Most of the time I can tolerate the pain I go about my days. I exercise
strenuously 6 days a week. I vary my routine I don’t know if it helps my
disease but it does improve my attitude and zest for life.

I am 77 so take hope and courage that you can carry on. You will be able to
find help, and you will find caregivers who care!

Continue to search for Doctors that have more than a textbook knowledge of
this disease.

It will get better!

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