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Comment by Halfbakedwho on December 26, 2017 at 2:36am

Hey CurlyK, did you get your hairpiece online? Thank you. : )

Comment by CurlyK on December 25, 2017 at 3:54pm

Merry Christmas everyone! 

Halfbakedwho, I wore really pretty scarves right before I started wearing my semi permanent hair piece. It was a relief to wear those instead of going through all of the fuss of hiding my scalp. ☺️

Comment by Halfbakedwho on December 25, 2017 at 2:50pm

What do those of you who don’t have access to a Lucinda Ellery and who don’t wear headbands do to cover your scalp? I have had quite the flare-up in the past month or so, right (ironically) after visiting my specialist in Paris. I’ve especially lost hair on the top of my head. My family says that it’s not visible yet, but of course I notice it, and am trying to look up solutions just to reassure myself. I’m afraid wearing a headband can seem too obvious - like obviously hiding... but if it works for you I’d like to hear more too. Hope you all had a lovely Christmas : )

Comment by illustr8r on December 21, 2017 at 8:42pm

@Jules I had pinpoint pains on my scalp all over my scalp but strangely not where I lost hair. I had one or two pimples but no nodules during the last big flare. My biggest symptom was that I was itchy everywhere. I don't know if that was because of the FFA or my B12 deficiency that was discovered at the same time I was diagnosed with FFA.

Comment by CurlyK on December 21, 2017 at 7:42pm

Jules Australia, I have had very little discomfort with my FFA. No redness, pustules, etc. only some minor itching. Strange disease for sure 

Comment by Jules Australia on December 21, 2017 at 7:06pm

I was wondering if anyone has seen credible info on any significant correlation as to severity of hairloss loss in ffa/lpp and the amount of scalp tenderness,itchiness, general discomfort. Or do some women experience just as much hairloss without any sensory scalp symptons to those who have a lot of discomfort??

Comment by Halfbakedwho on December 18, 2017 at 8:14am

Just a quick question - are you finding that you are losing hair while taking your medicine as directed? First I feel a sore spot on my scalp a centimeter back or so, then, if I look at the spot, notice it's losing hair. Sometimes red spots, sometimes nothing. Then the cortisone mousse/minoxidil seems to make no difference. I know I'm in flare-up mode, but other than the regular life-nonsense am not particularly stressed. I just want it to stop here, right here, right now. Like we all do I imagine. Thank you for listening. HBW

Comment by Donna on December 18, 2017 at 12:05am

AnnieMay, I was wondering if you are using any thing with retinol in it on your face. A couple years ago, all of a sudden I became allergic to a creme I was applying to my face.  ROC I was itchy all around my eyes and brows & red.   It had nothing to do with FFA as I didn’t have that then.  Since then I have not used any cremes or anything with retinol in it & I have had no problems.  Just a thought for you. 

Comment by AnnieMay on December 17, 2017 at 2:35pm

Thank you Isabel and illustr8r- I'm off to get the Avene thermal water, aloe vera gel and cortisone 10! I've been nervous about applying anything near my eyes?? Honestly lately my whole face gets red for no apparent reason and it feels like it's on fire. Yes, so many bizarre strange annoying issues. 

Comment by illustr8r on December 17, 2017 at 2:11pm

Hi AnnieMay,

I have 3 go to things for itchiness and redness. Cortisone 10 first, if that doesn’t help then Sarna anti itch lotion. Finally, I have a tube of Triamcinolone Acetonide that my dr prescribed for my random itches-like the unexplainable one in the palm of my left hand. I’m using just a small dab of it now on both sides of my eyes that have turned fiery red each morning when I wake up. A new thing. I also massage castor oil on my brows when they get dry and flakey. Hope you find something that helps you! It’s akways something isn’t it?!?

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