Replies to This Discussion

Permalink Reply by DW on December 16, 2018 at 7:47pm

Yes, unfortunately I have experienced this as well. Mine usually occur on my forehead and the top of my head/scalp. Also sore, not necessarily itchy. A friend of mine who also has FFA was told by Dr. Jeff Donovan, whom I’ve also seen in the past, that it is associated with FFA. ☹️

Permalink Reply by Jules Australia on December 21, 2018 at 3:11am

Hi Donna Yes I have had many of these over the 6 plus years with lpp & ffa. They can be tender & quite irritating. They are actually called papules ( little red or pinkish pimply sores, inflammation on the scalp at top of the hair follicle), described in some articles on lichenlanopilaris & ffa. They are a sympton of the disease/ disorder. So sorry you have this but you are in the right place for info & support, when needed from many women (& maybe even a couple of guys) on this forum. We're all in same boat, trying to live with the day to day challenges this has on our lives.We are all here to help each other as best we can.

Permalink Reply by Louise on December 30, 2018 at 6:19pm

Hi Donna,

As ladies says beneath it is a part of the disease,  I have got pumps all over my head itching, burning and painful, and I think is to much to endure, because it reminds you that all that hair will fall off. I´m in my third year on FFA now and lost a lots of hair on my temples, and starting losing a lot on my foread, like patches

I have had a lot of medication but no one really help, I am starting with a new med in jan. Quite risky, but<!´ll take that risk,hair is to important for me, I can´t see a future without hair. I rather loose a breast,

Acceptance! is a word that I can´t take in and haven´t for the past three years. It is really hard to cope with the disease. I have stopped travelling (wich I love) stopped training (the heat in the gym makes my head burn.) Stopped with almost all social activites

The only thing that still keeps me going up in the mornings is 100 mg Prosac a day. I couldn´t live without them, I have tryed a topper from a very well renomeed firm, but it looks like I hade a cake on my head, I din´t look real

Psychoanalyst Yes, I wlll test once more, but I don´t think she/he will have any sucess with me. Unfortunatly their favorite Word is Acceptance.

The only thing that would make me happy again is a curable medication.

But we are all different, some have easier to come to Acceptence some not. I can´t accept to be unbelieveling ugly, that most women are who have lost the hair. I am not Young, I have a red scalp, with pums and sores, together with this not a round nice head, which you can see on young Girls.

I have come over that I am selfcentered and I´m not ashamed of that anymore. 

Louise