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Comment by Polly UK on November 5, 2015 at 5:22pm

Hi Liz, yes I saw the programme and she says her hair loss is caused by medication taken for a heart condition. I found a press interview on the internet and one of those drugs (perindopril) I have taken for about 10 years! It is possible the shock of heart attacks in 2004 may also have some bearing though that wasn't mentioned. Interesting!

Comment by Liz on November 5, 2015 at 4:58pm

Did anyone see ITV this morning with Lorraine? The lady chef talked about her hair loss and wigs. It sounded like she might have the same type of hair loss to us as she said hers will probably never grow back and also the damaged hair grew in zig zags. It would be interesting if she does have the same hair loss, we could do with a well known face to fight our cause

Comment by Mel on November 5, 2015 at 2:58pm

Hi, Steph (and everyone). Thank you for the info. I think I may try the B12. I have not had the jelly thing, but red bumps. I also fear the steroid cream and only used it a little but stooped. Then 3-4 months ago I did the cream again for 5 days, then very slowly tapered to 1x per day for days, then every other day, then every two days....I still felt it caused more hair to fall out in a couple front sections, but felt better about my tapering effort. Anyway, I also have had frontal baby hairs appear in the two sections that list hair (in the past 1 month+) and my hair dresser noticed babies also on the side, where my hair line goes back pretty severely. This week, however, I'm have a return of itching. Hmmm... Anyway, I also made changes in shampoo and conditioner, did away with plastic food containers and have been on the autoimmune protocol for over 5 months now, and they say your skin is the last priority organ in your body so it can take a long time for a new, healing diet to take effect. In addition, I had oral surgery in August, which turned out was a longtime infection, now removed. So I don't know the reason for these baby hairs either and I'm holding my breath that they stay and keep growing. They are about San inch long now. Could be nothing? The steroidal foam? The diet working? The removal of infection?? I did have a work trip last week so diet wasn't perfect ( had night shades :( ) so maybe that's why I'm itching now? So many questions... I also feel the added worry/pressure of being single. I intend and hope to keep my hair as much as possible. ...I will try to figure out how to post a photo of the baby hairs and hope I don't jinx myself just mentioning them!! The are actually about 2 months old.

Comment by MnM on November 5, 2015 at 12:06pm

Steph & Lauren, I'm 32, diagnosed at 28. It seems like more and more premenopausal women are getting this, which can be frustrating when the most things I read says that FFA is most common in post menopausal women. I've tried all the medications so far, topical, oral and injections and nothing seemed to make a significant impact. I'm pregnant right now, so I'm not doing anything for it at the moment. After baby arrives I hope to meet with a functional medicine doctor and get tested for vitamin levels, etc, and then take steps from there. Good luck to the both of you!

Comment by Lauren on November 5, 2015 at 11:59am

Oh I was also going to say that I've had that jelly follicle thing as well, and I can remember having red pimple like things along my hairline as far back as 5 years ago though I thought nothing of it at the time. I think perhaps it has been a very slow progression that started way back then. It's been so hard to not obsess about it but I think I'm slowly starting to accept it and realize there's really not a lot I can do change it. I tried rogaine for 4 months before I was diagnosed but it just irritated the heck out of my scalp so I quit. How have you all dealt with the diagnosis and feelings that come with it?

Comment by Lauren on November 5, 2015 at 11:51am

Hi, I also was just recently diagnosed with FFA and am 31. I had a biopsy to confirm. It's mostly on the left side where I part that is receding/thinning though my family says it's not noticeable. For over a year I thought maybe I was just crazy because I noticed a slight difference yet everyone told me it was the same and if I had lost any it was because of the stress I had been under (husband who I had been with for 14 years cheated and left very unexpectedly). I too also have a bit of new growth like you Steph. But the new stuff is very fine and doesn't seem to get very long. So I don't know if it just keeps falling out or what. Anyways, j tried Bosley shampoos, hair vitamins, various vitamin supplements but nothing has really seemed to make much of a difference. Right now I take iron as my ferritin was around 20, a vit b complex, vit d, and dr has put me on doxycycline. I'm glad to have found this group. It's been very stressful to think I might lose more hair and I'm divorced and would very much like to have a new relationship someday, but feel as if I won't be attractive if I lose more hair. Sorry for rambling :)

Comment by steph on November 5, 2015 at 11:38am

Hi all, I'm new to this and have found it very helpful reading all of your comments. I'm 30 and have just been diagnosed with FFA. When hairs were falling out from my hairline I noticed jelly like follicles on the roots and wondered if anyone else has had this? The doctor gave me dandrazol shampoo & I think I had some new growth and the weird lg follicles seem to dry up and eventually stopped coming out. I took multi vits as well as B12 which seemed to help my hairline and definitely helped my eyebrows as they have become thicker and darker. Since seeing GP in June I made lots of changes. I stopped using normal sunscreen on my face and now I use rad environ, I've stopped using hair spray and dry shampoo, Ive used Philip Kingsley scalp exfoliater (gently exfoliates with fruit enzymes). Stopped using tresmee shampoo and started using Holland & barret aloe Vera shampoo. When I saw specialist she used a magnifying glass to look at scalp and said I had FFA, she didn't seem interested that I had new growth and told me to use steroid cream for 3 months. I'm worried about using it and wondered if anyone else has found it helped or made it worse? Iv been researching on the net and found helpful sites talking about aloe Vera, green tea, amino acids been helpful for hairloss. Iv been tested for low iron levels, thyroid, over active immune system- all are ok and tomorrow I'm being tested for B12 deficiency. I've still got obvious bald patches at front of hairline but I have got quite alot of new growth now. I'm not sure what exactly has helped my new hair growth the most but I wanted to let you know what I've been doing as something has made a big difference and I hope it can help you too. Steph

Comment by SJC on October 12, 2015 at 9:55pm

I'm curious... I see a lot of ladies here getting tested for ferritin.  My doc normally tests for Serum Iron.   Isn't Serum Iron testing enough to determine an iron imbalance in the body?

Comment by Marilyn on October 9, 2015 at 9:33pm

Hi all-haven't been on in awhile and I'm trying to play catch up on most of the comments-I do have a question -I have had an increase in scabs in my scalp as if they just happen, I don't itch or rub hard, use organic products for hair color but it continues.  Has this happened to others and has cellcept worked to diminish symptoms??  My derm wanted me to start the drug 3 months ago but the side effects didn't seem worth it--thoughts are appreciated .  Thanks!!

Comment by Joy on October 9, 2015 at 4:02pm

I have stopped using sunscreen due to the metals that some think may have contributed to the LPP - had not considered mineral makeup and I do use that. I used the clobetasol for a while but it never did anything.  Initially when mine started I had a pneumonia injection and shingles injection  which really should not be given at one time and about a month later they gave me a shot for osteoporosis.  Prolia is known to cause problems with dermatitis. After all of that I was in auto immune land!  I refused to take the plaquenil as I was afraid that I would have some other bizarre reaction to it as well.  I really think that a liver cleanse would be worth trying or use the milk thistle as I think storing the A seems to make more sense than almost anything else.  The yeast cleanse made sense as well as I had all the medications and my doctors never suggested taking any probiotic.  As woman we love sugar - depressed we add a little wine and presto the yeast are multiplying. At this point I really was willing to try just about anything - I hope that you can get your hair to stop abandoning you.  I really do not know when I lost mine for sure as I never wear my hair up but I think that it happened pretty much in a 9 month max period of time.  I really believe the fact that I took the milk thistle was an accident that may have stopped my hair loss but obviously was not enough to stop the LPP.  It has markedly changed in the last four months since I stopped eating eggs and all the vitamin a in the face creams.  Let me know about the study at Duke - I would love to be part of it as long as they would not require that we take medication.  I had tried to find the info on line but never did. 

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