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Comment by Halfbakedwho on October 10, 2018 at 5:30am

Fickle hair, moi aussi moi aussi. 

I have a bald patch forming RIGHT ON TOP OF MY FOREHEAD in a very visible spot, with the lovely red dots to accompany it. I saw on the FB group page something about vitamin D - is that the news Erika? I want to look into that definitely. I am going back to Paris at the end of the month to see another (yet another) specialist who will do a biopsy though I'm not sure why exactly. the Dr Famous-Man (he of the hair-follicle trophy on his desk) just wasn't that nice - and it was an expensive visit for very little help. The nicer lady said her colleague that I will be seeing now is more specialized than she. So... there you go. I have my freak-out worry times, and other "I-don't-care" denial times. Depends a lot on the time of day as well. Nights are not good. Some days not good too. Working helps. voilà. 

Comment by illustr8r on October 9, 2018 at 4:58pm

I'm so fickle...I have a good stretch of decent hair days...and when I don't I come back to the boards! Seriously though, I haven't posted recently but I still read things almost daily.

Anyhoo- caught a cold/flu. I guess my immune system was down and so it's triggered a mild flare with red pimples at my widows peak and a painful area in the same spot. Things have been sooo good for a while that I had even stopped worrying so much about my hair. Now, I guess its time to break out the Clobetasol again. UGH. So friggin' frustrating.

Comment by Miss Mymble on October 8, 2018 at 8:19am

What a cliffhanger, Erika B. Almost too exciting ;) Hope you soon have the time to share the “great medical news” with us all. I’m sure I’m not the only one who is curious to read your post:) What ever it is, so cool you feel like sharing it. :)

Comment by Isabel on October 5, 2018 at 12:16pm

@Erika B, just click on  "+ Add a Discussion" link right above the comment wall and you'll be taken to a new screen where you add the thread title (discussion title) and that's it :)

Comment by Halfbakedwho on October 5, 2018 at 10:14am

Hey thank you ! Yes it’s looking like I am going to have to do something soon. It’s just going to be hard to « fit » my poodle-consistency hair.

Part of me wants to go back to straightening it, but the doctor said not to do that. I’ll write more later 

am in a traffic jam !!!!

Comment by Wyobalance on October 4, 2018 at 10:35pm

Halfbakedwho - you can cut small pieces from a wig or hairpiece and stick them to scarred areas.  Davlyn Tape or ProTouch glue from HairDirect.com work well and can last awhile.  

Comment by PBsunshine1 on September 30, 2018 at 10:10pm

Hi AnnieMay

I have lost all my eyebrows and now my eyelashes are falling out. I have been diagnosed with Shjrons part of that is dry eye. :(

At this point I do believe it is connected

Comment by AnnieMay on September 30, 2018 at 9:43pm

Hello all- I haven't posted in awhile but I'm right there with all of you in the struggle with this awful disease. For me the itching has reared it's ugly head again. My scalp is driving me crazy but also my eyebrows (whats left of the them), the back of my neck but the worst is my eyes. . .I feel like the burning and itching in my eyes is related to all of this? Love to hear any ideas for things that help . .

Comment by Afraid on September 28, 2018 at 3:52am

Thanks for taking the time to reply Rose.  I used clobestal 2x day for 10/11 months.  It may have reduced the itching sensation but not hair shedding or progression of hair loss.  The type of hair replacement I am considering is a bespoke human hair piece fitted  semi permanently.  A huge step but Better than the alternative..... 

Comment by Rose on September 26, 2018 at 1:24pm

I agree with what Toby said maybe it has something to do with the products we used I used a lot of foundations and powders. I used a Avon foundation and powder for a very longtime and also olay spf face cream need to look into ingredients. I was wondering if a scalp biopsy gave anyone a scar ? That’s one reason why I’m hesitant to do it. Also what are some good coping mechanisms lately I’m very depressed I can’t stand my hair I’ve been thinking really negative I have a lot of worries due to my hair continueing to fall out at hairline and me being so young. If there is any other people in the ages 20-30 that have it I’m very interested in knowing your story or even someone who got it when they were that age. I can’t take any of the pills due to me being premenopausal I choose not to do injections on my scalp I think my last option is the clobestal and to change my diet I haven’t even had any appetite or desire to anything since this. 

To the person named Afraid I am also so scared your not alone.. so clobestal didn’t do anything for you ?? How often did u use it and minoxidil can’t hurt just don’t think  u can grow the hair that’s gone I been getting small baby hairs everywhere else with it just be careful not to get it on your face like cheeks forehead .. it also works for eyebrows.. heard bad things about the shot never a good outcome that I have heard. Also what’s hair replacement ?

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