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Hi my name is Rachel and I'm 30 years old. I recently was just diagnosed with frontal fibrosing alopecia the end of April. My hair loss started December 2012. I saw a dermatologist the beginning of 2013 Who thought it had may have been TE from stress. I also had a miscarriage in September 2012 and my obstetrician said it was hormone related from the miscarriage and that it would last about a year. My daughter Who I got pregnant with in June 2013 just turned 15 months old and my hair loss hasn't stopped. About five or six months ago I've noticed burning, tenderness and itchiness to my scalp . I also noted the crown of my head and my temples losing hair the most. I finally went for a second opinion to see another dermatologist who did a biopsy right away and discovered it's FFA. I'm hoping to find some more answers as to why this is happening to me. I see that it's more common in postmenopausal women which I feel that it could possibly be hormone related. I'd like to get to the bottom of it. They started me on topical steroids and Doxycycline. I also just started Rogaine. It's nice to meet all of you . It's nice to have people who I can relate to and have a good support system.

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Replies to This Discussion

Permalink Reply by NatalieW on May 21, 2015 at 3:54am

Hi Rachel, so sorry to hear that you have been diagnosed with FFA so young.  I have a similar story to yours - mine developed during the journey of multiple miscarriages and hair loss started when I was about 36. I do feel a bit cheated that it's happened pre-menopausal (I'm 39 now) but there seem to be a few of us in the same boat. I am on exactly the same treatment course as you.  Regaine is fantastic on eyebrows but hasn't done anything for my hair line apart from a few little white hairs. I am also gluten free as I find the redness and itchiness are more manageable without gluten in my diet. Hope you can find some support and answers in this group. Natalie

Permalink Reply by Rachel218 on May 21, 2015 at 8:32am
Thank you Natalie. I am still having a hard time dealing with it and wrapping my head around it. I also am doing paleo and gluten free diet. How long have you been on Doxycyclime for? Do you find any relief with that ?
Permalink Reply by NatalieW on May 21, 2015 at 7:32pm

I find that I just get used to the amount of hair loss I have, resign myself to that, and then I lose some more and go through the process of grieving again.  That said, it is one problem in an otherwise great life so I try to keep perspective. I have been taking Doxycycline for 8 months now and I think it relieves the itching and redness, and allows me to use Regaine without too much irritation.  My Derm would like to trial me off it to see if I can manage without it, but I'm not keen to stop at this stage.

Permalink Reply by Kristen P on May 21, 2015 at 12:53pm

Hi Rachel! I'm like you - diagnosed with FFA pretty young (officially at 36, but it started when I was 33/34.) My derm also initially thought it was stress related.

I've never been pregnant, so I haven't experienced the same hormonal surges as you. From what I can tell, they have no idea why it happens to us. There's really nothing extremely common between people who have it, other than it tends to occur more often in fair-skinned white women (although I'm by no means saying it doesn't impact other people.)

I hope your treatment offers some success! You will find this site very helpful and supportive.

Permalink Reply by Charlotte on May 21, 2015 at 5:15pm
Dear Rachel, I'm so sorry to hear your diagnosis.
I'm 34 and also have FFA. I guess my hairloss started after my first child was born. It stopped during my 2nd pregnancy. My little one is turning 2 this summer. Unfortunately my hair loss increases. So my derm thinks the only chance to stop it is by taking avodart
Well, I have big concerns considering the side effects...
I hope your treatments work!!
Sending you a big encouragement hug
Permalink Reply by MnM on May 25, 2015 at 12:16am
Wow, I'm glad to see this thread started, I was beginning to think I was the only under 40 with FFA. I was diagnosed at 28, now 32. I had significant hairloss at my temples in the first year, was symptom free for about a year and a half while I was pregnant and nursing. FFA symptoms came back with a vengance once I stopped nursing. I went off Actos a few months ago now that we're trying for baby #2 and I'm hoping pregnancy with hold things off for awhile. Glad to meet all of you!
Permalink Reply by KarenGinny - Iowa, US on May 26, 2015 at 6:46pm

I was diagnosed about 4 years ago when I was 46 and have not hit menopause yet. I was told it is more common after menopause. But I don't think the dermatologists really know what causes it since they all seem to have different ideas. Mine started after a time of stress, death of family members, husband had heart attack, and it was slow at first but now after 4 years, seems to have stopped. but I have lost a good 2 -3 inches all along my forehead and temples.

Permalink Reply by Rachel218 on May 26, 2015 at 10:28pm
Thank you everyone for all the responses and support! Anyone in the New England area? I'm looking for a new dermatologist . Also, how often are you all wasking your hair ? What shampoos are you using? I have bad days where my scalp is sore and red all day and today was one of them. Is anyone else losing hair on the crown of thier head ?
Permalink Reply by NatalieW on May 26, 2015 at 11:35pm

Hi Rachel - I wash my hair every day with Neutrogena T-gel (which I hate the smell of, but it does help with the itching) or Paul Mitchell tea tree shampoo.I am definitely sensitive over the crown of my head now, and from my experience, the hair loss follows the tenderness. Luckily I have a lot of curly hair so I'm able to cover it for now. Good luck

Permalink Reply by Kristen P on May 27, 2015 at 1:51pm

I mainly use Dermo-calm by Kerastase. It's not inexpensive but I can often find deals on Gilt or Rue La La. I also have dandruff/dermatitis so I use a prescription shampoo once a week or so.

Permalink Reply by Chris on May 28, 2015 at 7:34pm
Hi Rachel,
I keep reading that it's more common in post menopausal women, too,but I was diagnosed at 41. There seems to be many younger women on this group. Since it's an autoimmune disease, I've tried to reduce inflammation in my body through stress reduction, diet and exercise. I'm also gluten free. I tried steroids without much improvement, so I stopped using them. I saw a reduction in the inflammation after going gluten free. I've also had improvement with flare ups and itchiness with Nizoral shampoo. I'm not willing to try more aggressive treatment, because the outcomes I've seen in the research don't seem worth the side effects for me. My hairline has moved back roughly an inch a year, so I've lost about two inches so far. My eyebrows are gone except for a few hairs. I can still brush my hair forward enough to hide it if I want, and I've gotten very good at painting on eyebrows, but I'm less and less inclined to hide it. I'm very "out" about what's happening, and my friends and most of my coworkers know, which has helped. I'm past the sadness phase, and I've moved on to defiance. I'm sorry this is happening to you. It's been great to hear from other women who are going through the same thing. Welcome.
Permalink Reply by Rachel218 on May 30, 2015 at 10:37pm
Did anyone have excessive shedding and a lot of dandruff when first starting Rogaine? My hair is shedding so much more and it's really itchy. I'm using the liquid.

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