Just diagnosed with frontal fibrosing alopecia

Hi, so glad to have found this forum, just before Christmas I went to have hair cut and my hairdresser was in shock at the loss of hair on my scalp since the last cut.  Needless to say he was pretty blunt and filled me in with horror stories.  I promptly went home and search Ed for a dermatologist in Melbourne who specialises in hair loss and managed to score an appointment on a cancellation.  Fast forward I had my appointment and apart from my diagnosis have been prescribed : aldactone, Minoxidil and ddutasteride orally.  Of course after the appointment was finished I had lots of unanswered questions, but don't see specialist again for four months.  Is anyone else on this combination of drugs, if so have they been successfully in halting disorder and what are side effects like.  Specialist did mention facial hair growth, rather ironic as I have spent my whole life battling hair growth in unwanted spots and have just had success with laser, now I am going to take meds that make me grow facial hair.  My daughter s wedding is in 12 weeks, don't know if I should not start drugs till after then?  Has anyone had some wins with dietary intervention s..any advice, ideas would be greatly appreciated, also is there a Melbourne based support group, thanks so much..

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Comment by Patrish on February 3, 2018 at 12:16pm

I know exactly how you feel.  I have been battling the same for the past two years.  From what I have read and researched there is no cure for frontal fibrosis alopecia.  However ... this may not be what you have. Did your dermatologist do a biopsy?  With him prescribing the meds. ,  undoubtedly, yours is treatable. But... unfortunately, there is no cure for "frontal fibrosis alopecia".  

Comment by Patrish on February 3, 2018 at 12:46pm

I would like to add to my above comment.  In some people, the condition stops on its own and doesn't progress any further.  I have read that many times it is caused by an autoimmune problem which, through blood work, can be determined as to what type.  So, addressing the underlying problem may benefit you and stop or slow down the hair loss.  I've chosen not to take the drugs creams because of the side affects.  I do believe mine is inhererited, and I do have fibromyalgia, so I have two things against me.  Genetics, i believe is the biggest factor and makes it the hardest to treat.    My grandmother had alopecia. Good luck and I think you are wise to try what the doctor prescribes for you.  Everybody situation is so different and I do not believe he would have prescribed them if he didn't feel they may help.  


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