• Female
  • Thiensville, WI
  • United States

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Mary's Discussions

Oral lichen planus

Started Jan 14, 2016 0 Replies

Does anyone with FFA also have oral lichen planus?  If so, how is it being treated?  Thanks...I am so tired of autoimmune problems.Continue

Tags: autoimmune

Friend laughing

Started this discussion. Last reply by Mary Oct 25, 2013. 64 Replies

I finally got the courage to tell my best friend about my FFA and that I might end up losing all my hair. I was absolutely devastated..she started laughing uncontrollably about the possibility of me…Continue

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Relationship Status:
About Me:
Just diagnosed with frontal fibrosing alopecia and am really scared and upset
Do you have alopecia?
Other type of alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (8 comments)

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At 7:25pm on November 25, 2018, Diart said…

Mary, I take 5 mg Finesteride daily. It is covered by my Medicare part D plan. I pay $4 for a 30 day supply.

At 7:22pm on November 10, 2013, Mary said…

Leslie Ann,  Thanks for asking...I have seen the dermatologist once since the initial diagnosis and have another appointment in December.  I am still pretty much in shock over the diagnosis of FFA but am sleeping a little better.

At 7:20pm on November 10, 2013, Mary said…

Jane...I didn't realize that there are different varieties of FFA.  I will ask my dermatologist about that at my next visit which is in December.

At 1:26pm on November 4, 2013, LeslieAnn Butler said…

Hello and welcome!

How are you doing today?

Leslie Ann

At 4:59pm on October 31, 2013, Yvonne said…
Your feelings are so normal. Don't be so hard on yourself. It is a hard thing, but it gets easier. Be kind to yourself, and know this phase will pass. So many of us have been right where you are, and we are just fine. My advice is to have a cute wig ready if you need it. Hugs.
At 10:19am on September 23, 2013, Plain Jane said…

Hi Mary.
I'm assuming you are the Mary who asked about antibiotics vs. antimalarials?
I spent over a year on doxycycline, with no control of inflammation and rapid progression of hair loss. During that time, my doctor also had me taking propecia, which did nothing except cause chronic dry eye syndrome, for which I then had to take prescription eye drops!) This spring I started antimalarials and after 2 months, the inflammation vanished and hair loss stopped. I no longer take the doxy (or the propecia), and only wish my doctor had put me on the antimalarial in the first place. I would have quite a lot more hair still.
By the way, the kind of FFA I have is the type that causes a red scalp in the area of attack, with painful little blisters that make my scalp itchy and sore.
Hope this helps.
Good luck.

At 2:34pm on September 19, 2013, Mona422 said…
Mary, I'm using Olux its a foam and it has stopped the itching and I see an improvement! I read some reviews and I was leery but he told me to use it and come back in 6 weeks and he will start a series of 4 injections. I'm following t to the letter, applying twice a day and it works! Good luck and ask your dematologist about it.
At 7:30pm on August 15, 2013, Susan Innes said…
Hello Mary,

Mary, welcome to Alopecia World. I'm sorry to read about your recent diagnosis and hope that your fear is overcome as the months progress. We all become stronger but it takes some time. I also wish to extend an invitation to join the Wisconsin group entitled "Alopecians in Wisconsin." We have several members in the Milwaukee area. You can click on GROUPS above in the menu bar to begin the process. Many hugs, Susan.


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