Scarring alopecia or cicatricial alopecia - anyone else have this type? Have you found any drug or treatment that has stopped the progression?

Hi - I am 61.  My hairdresser first noticed I was losing what she considered to be a lot of hair about 25 years ago - I asked my doctor about it, she looked at my scalp and said everything looked fine.  So I never thought anything more about it until my current hairdresser noticed a small bald spot above my right ear about 7 years ago.  I thought it might be due to stress because at the time my husband had just had open heart surgery and then 3 months later was laid off his job of 26 years at Nortel.  The bald patch kept getting bigger and bigger.  I finally had my current doctor send me to a dermatologist and a year ago she diagnosed it to be Lichen Plano Pilaris (LPP) a type of cicatricial alopecia.  For the past year my doctor has been experimenting with different drugs - sometimes 4 different drugs at a time! Nothing was stopping the progression - it was only slowing it down.  The last drug I tried was a powerful immune suppressant: cyclosporine.  After 2 weeks on it I got such a bad cold/flu that I decided 'enough is enough'. I just wasn't myself on these meds and I was worried about all the scary side effects.  I stopped taking all the drugs.   My question is this: has anyone with this type of alopecia had any success with a drug or other treatment to stop the progression?  What happens after all the hair on my head is gone - where does the disease go from there? I don't have any hair on my arms or legs but I still have facial hair, eyelashes, underarm hair, pubic hair.  I lost most of my eyebrows about 5 years ago and had them tattooed on. I would love any help, advice you could give me.

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