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Comment by AC from CA, USA on February 11, 2013 at 4:56pm

Hello Ladies--I’m new from CA. I‘m 45, mixed ethnicity, & perimenopausal. I’ve had skin related problems since the onslaught of hormonal changes began in my late 30s. My symptoms began as intense PMS that turned into extreme inflammation of my facial skin which would swell angrily, very hot & red, & thick. It was extremely dry & extremely itchy & it burned at times to have anything on my face except water. Initially—in my late 30s—I was diagnosed with rosacea, then dermatitis & I was prescribed Elidel cream-- which was very effective at ending the problem then. I thought of these episodes as my body’s custom version of hot flashes.

Fast forward a couple of years & I noticed my hair changing—thinning & a different curl pattern. I noticed that some of my eyebrow hair started sticking straight up. I chocked all of this up to hormonal changes. Then my eyebrows started thinning until there was a large missing patch on one side. I also noticed generally thinning hair, but again thought it was just aging. I thought I may be hypothyroid based on this. By last summer, it was clear that my eyebrows are balding & the hair isn’t growing back. Since last Fall, I’ve realized my eyelashes are thinning & all the fine hair on my front hairline is gone; my hairline has receded up to 1.5 inches from ear to ear & the bald skin left behind is weird. Recently, the facial skin inflammation/burning/itchiness is back with a vengeance but it is limited to my forehead & hairline this time—not my entire face. My neck skin is also affected, but in the way that it is papery thin & overstretched looking, not thick, scaly & leatherized as on my forehead/hairline.

After getting nowhere with my docs, I scoured the internet & began to suspect FFA. I begged for dermatologist referrals, who confirmed this diagnosis last week. Biopsy forthcoming to help guide treatment. My dermatologist says he will refer me to regional hair specialist for consultation after the biopsy, which is at least something here to look forward to, I guess. I am devastated that this is irreversible & that I am helpless. After stressing about this problem last week, I literally woke up this weekend to find that the skin on my forehead had gone ablaze with inflammation & had formed thick, scaly, dry, reptilean layers overnight. It itches as if ants are crawling on my skin & it burns, so that even if I am not looking at the wastel& where my hair was, I can feel it there all the time.

I believe there is both a stress & hormone trigger that has brought this entire condition on for me, possibly thyroid related as well, though my blood tests results have all come in within the large “normal” range that doesn’t necessarily account for what my normal is. However, my free thyroid was at the bottom of the normal range.

I am not one who has been overly invested in my looks, though I am/was naturally attractive. I’ve never worn much makeup or invested in the art of manufactured female beauty as I prefer a more earthy presence. I find myself feeling ashamed, depressed & very stressed over this thing I can’t control. And, I feel stressed that I am feeling such stress when it is certainly the thing I least need. Yet, it is impossible to not panic when being jarred by reality when looking into the mirror & seeing no eyebrows & the marching forth of baldness. (continued)

Comment by Stacey on February 11, 2013 at 4:40pm

Hi I've just joined and its great to read all your comments. I am currently losing hair at the front and my temples, but I am undiagnosed. My docs and derm dont seem to interested. My scalp is very ichy at times and I have the odd very small red mark which could be a folicle scar? Its where the hair seems to be vanishing from. I've been using bettamouse and nizoral which is helping a little with the itch/burn sensation. I am hoping to get a second opinion and biopsy done so I know what I've got. I dont know whether to start on minoxidil or not, but trying to hold out for a definate answer.

Comment by ElleMN, USA on February 11, 2013 at 3:01pm

Simone, my dr recommended head and shoulders classic clean, DHS shampoo with zinc (which I have to special order from the pharmacy) but those products are to help with itching. I think the gentler the shampoo the better.

Does anyone have a great, natural way to soothe itching; did someone mention tea tree oil? The itching is new to me.

Also, does anyone else experience small round, red, bare patches on top of the head, well away from the hairline? I go to my dr tomorrow and will ask but wondered if others have had this.

Comment by Simone NJ USA on February 11, 2013 at 2:35pm

Hi Debs:

You look great in the wig. Thank for the info and will check it out. Since I'm new to FFA. What's the best way to care for the existing hair. I have been using an organic biotin shampoo and conditioner. Other than that..is there something I should be doing/using? Also, can one color the hair once they have FFA? If you or anyone have any advice for me on this that would be great...thanks...

Comment by Debs on February 11, 2013 at 12:30pm

Liz - I have the same look too. I looks like this and then it falls out. No itching or visible inflammation.
Simone, I have been getting my wig info from a site in the USA, WWW.WIGSUPPORT.COM the ladies on there are fantastic. They post photos of themselves in different wigs, tell you the name, brand, where they got them, how to shampoo, cut, style them... literally any thing you can think of they will have the answer. It also has helped to normalise wearing wigs for me by seeing how beautiful those ladies are.
In the USA you have great wig brands and online suppliers. The wig I wear to work is a Jon Reanu wig called Ignite (the wig in my photo is a Julia wig also by Jon Reanu) have a look at www.wigs.com that is a good website with lots of wigs, I would also then just input the name and brand of a wig you like into the internet search engine and see if any other site has it cheaper.

I am sure the hormones in food is detrimental to our health and it does make sense that it could be related to our FFA since this condition affects women close to menopause or post-menopause. I hope that now Celia has given us so much help and info to get to Dr Harries there will be enough of us to really get some more research on FFA.

Comment by Simone NJ USA on February 11, 2013 at 12:25pm

Thanks for the info, Celia!

Comment by Simone NJ USA on February 11, 2013 at 8:54am

Hi Celia:
Hope you had a great weekend! Do you find that the ratio will turn grey aver time. That's my only concern with tattooing versus using pencil..any thoughts will help..tks

Comment by Alice on February 11, 2013 at 8:33am

Hi, Celia. Elidel hasn't helped my hairline, either, but has helped my eyebrows. I still use pencil to fill them in but can pass for normal w/out it.

Comment by Alice on February 11, 2013 at 8:31am

Comment by Alice on February 11, 2013 at 8:14am

I've been lurking for a while and finally decided to post a comment for the group. I am 61 years old, live in the US and have had FFA for about 1 1/2 yrs.

About 6 mos ago, I talked to my dermatologist about a woman in Greece w/ FFA who was successfully treated w/ Avodart (a prostate med) and Elidel (a cream for eczema). See http://www.dermattikon.gr/magazines/_1/KATOULIS%20EN.pdf.

She gave me some samples of Elidel and it has helped my eyebrows. One was noticeably thinner than the other and now they are nearly the same. I still have some itching and soreness, though.

The next time I went in, my doc had done some research and offered me a prescription for Avodart, but I wasn't ready to go that route yet. She does have one patient taking it, so I plan to ask about that when I go back next month.

I have quite a bit of itching and soreness all over the top of my head but find that tea tree oil helps. It seemed worse when I was using Nizoral shampoo and topical Clobetasol. I think they must have been too irritating.

Has anyone else tried Elidel for their eyebrows or tea tree oil for their scalp?

Alice

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