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Comment by Halfbakedwho on March 24, 2018 at 7:29am

Hi everyone I have followed your discussions but have been so busy. 

Despite having changed medicines with Dr. Famous Man in Paris, (he of the large hair-follicle trophy poised prominently on his desk, next to the pile of books he's authored), I am losing hair as fast as ever. I am disappointed, having hoped that a change in cortisone and tetracycline might slow things down. Nope. 

I don't feel, for me, that I can tolerate making drastic changes in my diet. I eat healthfully, I don't eat a lot of meat or sugar etc., and when I cut out gluten it made no difference (but I felt deprived and grumpy). I admit to a Coke Zero issue, for which there is currently no 12-step program (if I were motivated I'd start one, but I'm not).

This morning I woke up to my ever-larger forehead and am worried about the future. But as I've said before, life is too short and there's too much I want to do to worry about special foods and diets, having injections, etc. etc. I just can't deal with it psychologically. It's odd to say that it may be easier for me to deal with losing my hair than to run around trying methods to keep it, but that's where I'm at today. 

This is absolutely not to judge anyone who tries many things to slow down/stop the hair loss. I really admire that. But I know for me I just have so much mental energy I can spare, and I need to keep things easy and simple - as we say in French - "ne pas prendre la tête" with this problem. I only have so much space in my head (and less and less hair obviously). 

I think I'm also lucky in that my eyebrows are sticking on my face okay, and my scalp feels weird but I don't have any pain per se. That rhymes. 

My second son has this idea that Irish people have large foreheads and so now I look Irish. I have no idea where he got this from, and no, I'm not Irish ; )

Have a good weekend,

Comment by Jules Australia on March 24, 2018 at 12:18am

Pauliegirl, I was reading one of your previous posts where you said you had received the diagnosis of scleroderma. I wondered if the rheumatologist prescribed hydroxychloroguine(plaquenil) for this, as my husband was also diag scleroderma about 18 mths ago & his rheumy has put him on plaquenil. Or were you
taking it for the ffa before Scleroderma was diag. And
do you think it has helped for either condition.????

Comment by ammie on March 23, 2018 at 8:29pm

YouTube is the best! Here's a great video about temporary eyebrow tattoos in case you haven't seen it. https://www.youtube.com/watch?v=_KRKyyZABGY

Comment by mc on March 23, 2018 at 12:55pm

I participated in the study at Mass General Hospital Boston only reacted to fragrance. Now using unscented hair products.  I went for a follow up this week and Dr. says no inflammation may be done!!!!!  9 month follow up.  Hoping the damage is done as bad as it is.  

Comment by ammie on March 23, 2018 at 7:40am

@Anonymous I am participating in study at Duke University in Durham, NC with Dr. Olsen. I filled out a permission form and then filled out a long questionnaire about places I have lived, beauty products I have used, etc. I don't remember everything since it has been more than a year since I filled it out. I haven't been asked to update anything since. I see her every 6 months. She talks to me about how I think I am doing. Have I noticed any more hair loss? Does it seem stable? Have I seen any growth? Am I feeling any side effects from the drugs? Then they take pictures of my hairline and she usually renews my prescriptions. I have an appointment on Wednesday of next week so I might ask her for an update on the study if I can remember. 

@MJ I requested to join the Facebook group but my request is still pending. Is there a vetting process? I can send my name and FFA story by private message if that helps. Thanks. 

Comment by MJ on March 22, 2018 at 10:03pm

No success stories that I have seen yet, but a lot of support as here. Pics of hairloss and hair pieces and wigs have been very helpful.  Also just looking at everyone’s page and realizing they all have this thing but you would not really know is somehow reassuring.

Comment by Anonymous on March 22, 2018 at 7:03pm

There is a study at the University of Minnesota, Dermatology Dept. I am checking into it. I saw it online, and emailed for info. Haven't decided yet 

Comment by Adie503 on March 21, 2018 at 10:35pm

@Anonymous I have not participated but I would. Where is the university? 

Comment by Anonymous on March 21, 2018 at 10:06pm

Has anyone pariticipated in a clinical study for this disease? I am checking into a study at our local University. Just curious. 

Comment by Jules Australia on March 21, 2018 at 3:54am

Lynn555, I am so sorry to hear of your Dads diagnosis & on top of it all you are having to deal with the hair/scalp issues. Unfortunately the scalp symptons & hairless you describe does sound like ffa/lpp but only a biopsy will reveal for cettain what type of disorder it is. I have resisted treatment, & had all the scalp sensory symptons of tightness tingles & creepy crawly feelings, espec in earlier stages, but have experienced a lot of tenderness, pain, itchiness, & minute papules which are often quite sore (tiny pimply like bumps which are inflammation from upper portion of follicle). The fine white scale around top of follicles is typical in lpp/ffa, (hard to see unless derm uses magnifier)....from my experience many of them don't look properly or clos enough at the scalp in order to make a more accurate diagnosis. I've also had odd hair issues with the egrading of quality & growing out wierdly kinky, courser & dryer (before had softer looser curly/wavy hair). The hairshafts in lpp can change due to fibrosis in the hair follicle. It is a bit of a mystery tho why some of us seem to have all the symptons & others might have the loss but with little or no scalp sensitivity. Keep posting & let us know how your biopsy goes....there are many women on this forum with a great deal of knowledge on the disorder, more so than many doctors/derms seem to have. We are all here to support each other; I have been so thankful & would feel so alone & lost without having found this forum, & support from all the ladies here. We all understand the distress & anxiety this can create,espec in earlier stages.

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