Hi Celia, thanks for the update on your visit to Dr Harries. I have not noticed this dent on my scalp, now you have mentioned it I will keep an eye out for it. I am so sorry to hear about your sister-in-laws health problems, I do hope she gets a clean bill of health when she gets her results. Knowing what is happening at your appointments means I have realist expectations of my own appointment next month, it is a huge help. XX

I'm not sure how many of us in the group live in the uk but I was thinking that it would be nice to meet up when the weather gets a bit nicer. Maybe we could arrange something if anyone else is interested?
x

Hi Rebecca. Welcome to the group. You will find lots of friendly support and information here.I am 41 and was diagnosed last September. It came as quite a shock to me and I worry becuse I dont know how bad it's going to get. I believe that mine started after a very stressful period in my life. I am currently waiting to see a dermatologist in Salford which is a long way from my home but several of the ladies in this group have seen him and he seems supportive even though his doesnt have all the answers that we so wish for, like why,? And how? and how can we stop it from getting worse! I have so far lost about 1.5 inches from my hairline, all of one temple and half an eyebrow! xx

Hi Everyone! Just wanted to give a report from my Dr.appointment yesterday. She said I had turned a corner on the disease - a good corner. Yea!! At least for now. Apparently things look better. I have new growth, less redness and inflammation. Even some fuzz where I used to have eyebrows! Of course things can always change with this disease. But for now it's good news. I am not as advanced in the disease as it sounds like a lot of you are, even though I've been dealing with it a few years. My treatment has been very conservative. I am not on any oral meds. I've only changed my hair products, getting steroid injections, and have used Clobetasol once. She was going to put me on Doxycline to help with inflammation, but this drug is on backorder everywhere. She does want me to use Clobetasol 3 times weekly just to keep inflammation down.I talked to her about Plaquenil and Actos. She said Plaquenil was not necessary now for me, but we did the bloodwk and I will get an eye exam done in case things change. Then she will put me on that. Felt it would be the best first oral med to try if needed. Actos she said had to many side effects that were not worth dealing with at this point in my stage of disease. I did not have any injections in my scalp done yesterday, just in my eyebrows. The steroid injections last time did give me a dent or ridge as some people say. It is a very common side effect that takes a long time to go away. It is from the steroid getting injected to deep and goes into the fat layer. Do not put any other steroid on those areas. I am also going to have a Patch Test done which is an allergen test specifically to see what your skin reacts too.

I told her about this website and gave her the name and address of Dr Harries. The study I mentioned previously on a comment I left about the Univ of Minnesota, is actually being headed up by Drake University. Something like 10-12 other university/clinics from all over United States will be involved. Hopefully this year sometime.

Rebecca - your family,children and friends will love you no matter what you look like!! Our children, I think, have been taught and have learned to be more tolerant of others than older generations. They will remember your sadness growing up more than some hairloss. I encourage you to find a support system to surround yourself with. Get out and enjoy life, you can't dwell on this disease! When I found out I had FFA I was actually relieved. I was so happy I was not dying of some strange illness!! Hairloss is nothing compared to death. There is no cure for that. I do get bummed out when I think someday I will have to wear wigs or hats all the time. (I hate hats!) You just have to keep it in perspective and realize there are worse diseases to have in life. Sorry this got so long.

To Rebecca, Glad you found our group, although sorry you are here because of this terrible condition. I started having my hair problems when I was 45, diagnosed with FFA last March at 46; so I was one of the younger ones. I have two younger sons, ages 13 and 10, so I know what it's like to try to be active with them and go to their school activities and be so self-conscious and wonder if anyone notices my awful hair. I just do my best to style my hair with long bangs and wear a hat outside if it's windy. But you must know that your children will love you no matter what you look like. It make take some time, but I think we all eventually have to make peace with our condition and try to continue on, and realize that we are lucky it's not a life-threatening thing. I went through some very depressing moments with this, but realized my family needs me and sitting around crying won't help it get better. PJ - Is that Drake University in Des Moines doing the study? I live in Iowa and would be very interested in participating in something like that, and in seeing other doctors for their opinion. If you have any more info about it, I would love to hear about it.

KarenGinny - I assume that is the Drake Univ, but didn't ask. You should contact them and see if they have a Dermatology dept and see if they are accociated with a clinic that sees patients with FFA. I will let you know when I hear more.

Hi ladies,
Just got onto the site and have read comments in response to Rebecca. Hi Rebecca, I'm new to the site also. I do hope the support from others will help how you are feeling. It's good to know others are experiencing similar feelings (although sad we all have this awful condition). Reading the comments about wigs has given me some confidence to check that out when I feel I need to. I guess I still keep hoping it won't get to that stage, but I have to be prepared I think. I have been on Plaquenil for almost 2 years and it's possible that might have slowed my condition, although it sounds like that might be hard to tell as everyone seems to have varying degrees of FFA. My specialist feels part of my condition is FFA and part of it is post menopausal hair loss (double whammy!)she is keeping me on the Plaquenil as I have had no side effects and she does feel it is helping. Most of my hair loss is top hairline but I have also thinned on the sides over the past 6 months. I have curly hair and so far my hair style is hiding most of the problem but not sure how I'll go if it progresses but more. KarenGinny mentioned a hat but I have to say I look terrible in a hat so hope I don't have to resort to one!

I couldn't go without mentioning that I have just become a grandmother! Tuesday 21st Jan our granddaughter Chelsea Elizabeth was born - we are so excited and looking forward to getting to know her. My daughter-inlaw and Chelsea are doing well and my son is learning all about nappies!
Enjoy your children Rebecca - they grow up all too fast. I can't believe my little boy is now a Dad! I agree with others, they will love you no matter what happens to your hair!

Hi, everyone! PJ, I am so glad things are going well for you. I am curious about what "hair products" you are using? Also, were you diagnosed with a scalp biopsy? The reason I asked is because I have been told that regrowth is not possible, so I am curious about your regrowth. Also, I have been taking Plaquenil and Actos and STILL have redness on my scalp. Do you?

Robyn, congrats on becoming a grandmother. I can't wait! My kids aren't married yet . . . but I am starting to get the desire.

Rebecca, almost all of us have been diagnosed within the last year, and some have just started taking meds. I have been taking the generic for Plaquenil for 6 months now and I think it is slowing things down - but who knows? I don't know what I would be like without the meds! Some medication takes months to build up enough in our body to begin working.

There is a page on Facebook called LPP Let's Put Out the Fire and so many of the members claim they have had reduced symptoms and success with various diets - Gluten Free and Paleo. I always felt like food has something to do with this because when I wake up in the morning my scalp feels normal and as the day goes on, I become itchier or more red. Recently, someone suggested controlling histamines in your body -- made me think . . .

Anyway, Rebecca you are not alone. All of us have had terrible days. The thing is that you have to put one foot in front of the other and keep going. Your kids don't care about your hair one bit -- they care about your heart. Even if you have to force yourself -- stay busy. Look into your kid's eyes and not at mirrors. When I am busy, I don't think about FFA. I think anti-depressants make sense if they make you feel better. Good luck.

I was diagnosed with FFA with a scalp biopsy. The redness on my scalp varies, not sure why. My hair products: Shampoo - rotate every other day between Head & Shoulders (zinc) and DHS Zinc Shampoo; Conditioner - Free and Clear brand; Hairspray - Free and Clear brand. This regiment was prescribed by the Dermatologist I see at my first appointment. I was told previously there was no regrowth too. I didn't think to ask her about it, I was too excited to hear things were better I guess. I'll make a note to ask that at my next appointment in a few weeks. I wonder if the histamines/allergens has anything to do with things. I do have alot of allergies. Something to keep in mind when I take allergy meds or get my allergy shots. I'll have to see if I notice a difference.

Congrats Robyn! Enjoy being a grandmother.

PamW - I forgot to mention on my shampoo, I leave it on my hair for 3-5 min then rinse it off.
Rebecca - I was told the dents go away or they smooth out. The timeframe varies person to person, but usually takes months to a year. I'm going to ask my Dr again about that.

Hello ladies! I joined this group in Nov but haven't contributed to the conversation yet. I was overwhelmed as I read through the threads about how similar my story was to so many. I'm 45 and was diagnosed Feb 2012 when I started working with Dr. Hordinsky at the U of M. It was my eyebrows disappearing that got my attention, and then the hairline slowly followed; all of this really starting 4 or 5 years ago. I have an 8 and 5-year old so I've been pretty tired and sleep deprived for most of this time so who knows when it really started. In 2009 I had been suffering from lots of eczema and psoriasis, and multiple illnesses in 2010--everything my kids brought home--and some joint stiffness so I was tested for lyme, lupus, celiac, allergies, thyroid, everything with the only abnormality showing up being low ferritin. I was relieved to not have something life threatening. I worked with one dermatologist who biopsied my scalp and diagnosed LLP. I then found Dr Hordinsky through CARF and she diagnosed me with FFA. The unknown aspect of FFA is what is scary to me, just not knowing how bad it will get. I once said outloud,"I wish my eyebrows would come back so I wouldn't look so weird" to which my daughter said "mommy you just look like you." :)

My current treatment involves steroid injections every 5-6 weeks, 5% rogaine foam at night, desonide on the eyebrows during the day. I also just started using the generic Retin-A on my forehead to build up the collagen to mask some of the blue veins showing through my skin (extra bonus using it on other parts of my face! bye bye wrinkles!) I also get indentations almost every spot I get injections but they bounce back after a month or two.

My hairline still keeps moving back, but I do see some hairs poking through. One thing my doctor mentioned is that this is a disease of caucasian women, which I find interesting. I wonder about an environmental trigger (watch the movie Plastic Planet if you get a chance). There is no alopecia in my family. I eat organic food most of the time. And I now eat gluten-free, soy-free, dairy-free when I can (this is new since the FFA.

Thanks for starting this group, and thanks for sharing all of your stories. It has helped me a ton.

PamW - it is the Classic Clean 1% zinc for the Head & Shoulders. The DHS shampoo has 2% zinc in it.

Ellen and I see the same Dr. Which is very interesting hearing our different treatments, but yet some of our early symptoms and such are very similar. Good to hear you have had the dents dissapear that soon. I've had mine 1 1/2 months now and no signs of dissapearing. I use the generic Retin-A on my face for my rosacia and the bumps that go with it. So far I don't see a change. Still have bumps and a red face. I've been teased since I was young about my red face and how easily I get "embarassed". My rosacia has bothered me more over the years than the hairloss. I really feel that FFA is caused by something in our environment or a chemical in a product that we have used or ingested. I have been on antibiotics alot over the years. I wonder if that has helped in keeping my FFA from being as advanced as others that have had it as long as me.

To Minnesota Mom:

I'm Black, and i have it; it could be more prevalent with people of European descent, but it's not exclusive to them.

Hi, I agree about antibiotics destroying your bacterial balance. I always take the probiotics if I MUST take an antibiotic. Recently I asked my doctor what I could do to improve setting off this aauto-immune disorder. She recommended probiotics and stree reduction. I had not considered taking probiotics all the time. Thanks for the reminder.

Another question. I'm going to try Biotin - does anyone else take it? I know these things can be false hopes, but why not?

Good morning everyone :o) I hope everyone has a lovely morning, evening and night. I'm off to work in a minute. Can I ask 2 questions. 1. Do those who have whispy bits of hair where thier hairline once was, shave those bits off? And how long do they take to grow back and does it irritate that part of the scalp? And also, Who else suffers from allergies? I have excema, hayfever, allergic rhinitis and asthma. xx

Minnosotamom, Please do inform your derm that Black women (indeed females of all ethnic groups) get FFA. I am Black, Lace has already responded to you on this forum and I know of another Black British lady that has FFA. So out of a total of 32 females that I now of with FFA - 3 of us are Black. This condition is exclusive to women that is about all that can be said of it and age appears to be a factor. Welcome to the group, Deb xxx

I wonder if men do get it but dont think of it as anything other than going bald?

Hi Liz, It would be lovely to meet up, I am in Surrey but can of course drive to meet up with you.

I don't have any medical condtions, apart from FFA! I did start another thread 'other autoimmune related health problems' so I am keeping any watch for any other nasties happening in the future.

I don't have wispy bits at my former hairline. Last night whilst taking off my wig I accidently 'waxed' about half a centimetre of hair off my hairline. I was using wig tape for the 2nd time and I took my wig off, this left the wig tape on my head. I should have used my rubbing alcohol on a piece of cotton wool to remove the tape but I didn't bother and just pulled it off, thereby effectively waxing some of my remaining precious hair. It came out with no pain as it was already about to fall out. I found it quite funny as I am running about like a headless chicken trying to save hair and I go and wax myself! XXXXX

Rebecca I agree with you 100%. I really do have a strong gut feeling that FFA is not a rare condition as the medical profession thinks, it is just under reported. My first thoughts were that I was just losing hair because of my age (48 at onset) and I am certain that many other ladies think the same. I also know that going to see a Dr about hair loss is very upsetting and many people most likely put off going. I had a very unsympathetic response from my GP. I didn't know that guys get it but if they do then it would just be written off like you say as androgenetic hairloss.

For ladies in the UK
Saturday 12 October 2013, Alopecia Conference in Durham organised by Be Bold Alopecia Awareness, cost is £30.00 inc lunch and evening buffet. I have just booked myself a place. Looks like a great event to get info/support/advice

www.bebold.org.uk

Hi Liz, you mentioned wispy bits of hair at the hairline - I have that. All along where my hairline starts I have a pencil thin strip of hair that is still there and still grows, from in front of my ears, temples to my forehead. I've left it there for the most part because I guess it helps me blend the rest of my hair in to it. Except I started shaving the very front of my hairline since it showed through my bangs that I tried to cover the bald areas with and looked funny. And of course that thin strip of hair keeps growing back, when just behind it is bare scalp that goes back about 1 1/2 inches all around. The rest of my hair is growing as usual except for a thin patch on my back right scalp. My eyebrows and lashes have stayed in good shape. I've also been taking Biotin when I remember but don't know if it's really doing anything. Someone mentioned this being a condition among middle to upper class women, and that may be, but I'll bet there are many lower income to poor women who have it but simply can't afford to see doctors or dermatologists and have it properly diagnosed, or figure it's just part of getting older. I think for men too it's more socially acceptable to be balding, whereas for women, we are supposed to have thick beautiful hair. ??

I thought about that comment also - upper class women having it more often. Actually kept me awake. I was trying to figure out what the difference could be. My only idea was air travel, altitude or toxins? Maybe stress? Just guessing.
I think Karen's idea of lower income not being able to see a dermatologist is probably right. In my case I have Medicare but most of you in USA do not and it would be expensive to see a specialist.

Hi everyone. I took a deep breath and got my haircut today. It's the first time I've had it cut since my hairloss started to show more. A lovely student was cutting my hair who has one more haircut to do before her training is finished. She was very lovely about my hairloss and showed me ways to brush it to hide it better. One thing I found interesting was that she had never heard or been told during her training that there is such a thing as scarring hairloss. She was led to believe that in all forms of alopecia the can grow back. It's a shame that hairdressers who are training now seem unaware of this condition.
x

Hi ladies,
Thank you for the best wishes on our new granddaughter! I have been reading the discussion with interest and there are certainly a lot of theories about aspects of the condition which I think helps us to maybe recognise aspects of our own particular circumstances. Liz since I was young I have suffered from heyfever and in my 20's asthma(mild). In the last 10 years my asthma has been non-existent and in the last 2 years my heyfever has reduced so much I really don't think I get that anymore - it makes me wonder whether the Planquenil I have been taking for almost 2 years has anything to do with the heyfever disappearing - it could be a co-incidence of course (a positive side-effect from medication for a change would be good though!) I'm not sure about the shampoo theory as I have used all sorts over the years. I agree with others about the economic circumstances dictating whether women follow through with medical treatment - many of us I'm sure hesitated to get advice as we saw it as such a 'small thing' to worry about given other more serious diseases. I certainly felt that way when I saw my specialist, particularly after my GP (female) thought it might have been my hair straightener pulling my hair out....although she did give me a referral to the specialist "just in case I was concerned"! Needless to say I don't see that doctor anymore! I also agree that FFA has probably been around forever, but in generations before us women have accepted this as an older age condition. When I was much younger I do recall seeing ladies with what looked like a receeding hair-line which I suspect was FFA. It sounds to me like we are very resourceful women, particularly when it comes to grooming so it's great to hear what others are doing to minimise the appearance of our 'receeding tresses!' Thank you for all this great information. Robyn

Celia, I am sorry to hear the bad news about your sister-in-law. The fact that she has a diagnosis and can begin treatment immediately is one positive I guess. I wish your family the very best in the coming months.

Sorry about your news Celia. Sounds like she's a very strong woman and a survivor, having gone through this before. Keep positive thoughts!!

I was wondering if there is anyone in this group that has never dyed their hair. I have for the past 20 years. I went to get my haircut yesterday and right away my hairdresser mentioned something was going on, she pointed out more hairloss on the side of my face on my hairline. So much for my Dr saying I looked better. Who do you go by - your Dr that is a hairloss specialist or the woman cutting your hair for the past 22 years every few weeks? My hairdresser is the one who encouraged me to keep looking for the correct diagnosis when I was first told I had Alpecia Aerta. She didn't believe it. She also feels I should stop dying my hair, but I am really gray for my age. Has anyone stopped dyeing their hair and noticed any improvements?

Pam I poised this question about hair dye on a UK based alopecia website and I had ladies tell me they had never used chemicals on their hair and had FFA. Like you I have dyed my hair regularly over the years. My derm has asked me not to as he believes that the chemicals women use on their hair in modern times may well be a trigger for FFA. I have not dyed my hair since I first saw him last July - it has not made any difference. Since I am wearing wigs now I am not going to dye it in the future and am using sulphate free shampoos to try to be gentle on my scalp.

Hi everyone I haven't been on for a while I've just come back from a skiing holiday in Les Arc in France. It was lovely not thinking about my hair all the time, only when I took my hat off!. I had more important issues to worry about, like how am I going to get down this slope without taking out all the other skiers on the mountain! it's only the second time I've been but I really enjoy it but I wish I was better at it!
Well there has been lots of conversation, Celia I'm so sorry about your sister in law I'm sure she will be fine she sounds a strong lady.Congratulations to Robyn on your new granddaughter you must be so proud! Debs, I love your new photo I can't believe that you are wearing a wig, you give us all confidence that if the time comes when we have to wear one we can look that natural too!
I was told that dying my hair will not make any difference now as the damage is done below the skin, but I have dyed my hair since I was 18 as I had my fist grey hairs when I was 16!
I have had hayfever since I was 23 and over the past few years I have suffer throughout the year with inflamed nasal passages and in the last couple of years I suffer from really itchy salivary glands which swell and I look like a hamster after I eat certain foods! So yes I am definately one who suffers from allergies!

Hi Celia, I have 3 different brands of shampoo/conditioner for synthetic wigs. I am in no way an expert on this... I use the Jon Renau shampoo last time and their conditoner to stop static, I am happy with the result, I also have some Gisela Mayer that I have yet to try. I have purchased it from any online wig supplier - they all sell styling products. However, I have been advised by a wig salon that they use baby shampoo and fabric softener for all their wigs and it works just as well. The wig in my photo is Julia by Jon Renau, I bought it for a bit of fun from the wigtrendz website. Glad you had a fab holiday Robyn. I have only been skiing once and I am too much of a wimp to try it again.

Hi ladies,
Celia I agree, a grandchild is definitely a distraction from my FFA (and any other worries for that matter). I've had a lovely couple of days visiting the new family!
I would like to add to the steroid injection comments. When I was first diagnosed (2 yrs ago) my specialist said she would not do steriod injections for FFA as these were generally only successful with alopecia areata.
I doubt that my specialist is an expert by any means but I do respect her opinion as she has admitted this is a difficult disease to treat given that there is limited knowledge about it in the medical world. The use of Planquenil seems to be slowing it in my case - however we don't really know necessarily if that is how my situation would have progressed anyway as it was diagnosed very early. Hearing your comments it sounds like she might be right about not having the injections. Enjoy the gardening Celia - hope the weather improves I understand from relatives in Devon it's been quite awful! Very hot last week in Melbourne, but Queensland is now flooding again which is devastating for those people. Robyn

Hi Rebecca. My mum has it too. She's had it for maybe 4 or 5 years and she's now 71 x

Hearing that the Protopic made things worse is worrisome. Oh no! I just got back from a follow-up with my Acupuncturist/Nutritionist, and we've determined that things are definitely better and she once again emphasized that for people with autoimmune conditions, gluten has to go, so I'm really committing myself to a life without it. I figure I've been around 52 years, I've had a lot of bread and pizza, I can do this. She wants me to curb my 1-2 glasses of wine/night habit and that's going to be hard, but February I'm taking it for a test-drive. Jules, good luck with the gluten-free diet. There are a lot more products on the market now since Celiac's disease seems to be more widespread. It's so much easier.

Hi All
When I first went to my private dermotologist back in May 2012, my daughter came with me, she asked him face to face, is this disease heriditary and he said NO! He did however say, auto-ammune problems are heriditary. The confusion gets worse! We are getting such mixed messages, I will ask my dermotologist the same question next week and see if she says anything different! Has anyone got any questions they would like me to ask? My mum didn't suffer from FFA!

I dont have my appointment through, with Dr Harries, yet Celia. I think I may give Gluten a miss. When I've looked in to it before it seems like it's in everything. I've bought a couple of books on the kindle on the Paleo diet (I think that's what it's called). I haven't looked at them yet but maybe they'll be helpfull.
x

I'm finding this interesting regarding trying a gluten free diet to ease our symptoms. Since I have a son who is autistic, I've read alot about some people going on a gluten-free,casein-free diet to improve symptoms of autism. It sounds like some people are genuinely allergic to gluten- "celiac disease", while others are bothered to a lesser degree. We tried the diet with our son some years back but it was difficult since he was so picky. It was hard to find substitutes for things he liked. But now it seems like it's become more popular and there are more products out there to take the place of gluten. Most stores have a health-food section with gluten free products. Of course mostly a person just needs to eat healthier, fresh fruit and veggies, low fat dairy and protein, etc. I found this link interesting - Anti-Inflammatory Diet (Sjogren's Syndrome Foundation) I should probably try to do this.

Hi Celia, I see Dr Harries on 22 Feb. I will ask him about gluten free diets... I am going to work today, wearing a wig for the first time at work, I feel physically sick at the thought of people looking at me. Going out socially with my friends/family is fine as they are all on my side if you know what I mean but work colleagues can be different. Oh well... off I go to face the music. XXXX

Good luck, Debs! Rebecca, I would be curious to know what your dermatologist thinks FFA is, if it's not an autoimmune disease. Why would our immune systems be attacking perfectly healthy hair follicles? I do agree that we don't know if the gluten-free thing works and I'm not far enough into it to be able to tell. I can tell that I'm less depressed and my skin has pretty much cleared up completely. So there's something to it. As far as FFA goes, time will tell. In any case, here's wishing all of you ladies on this post strength and courage. Have a great weekend.

Rebecca, I know from your previous posts your are having steriod injections, is your dermatologist in Berlin giving you any of the drugs that Dr Harries in the UK is using to treat FFA - doxycline or planquenil ? These 2 dermatologists are both seeing lots of ladies with FFA so I am curious if they are using the same treatment regimes.
Well, my first day at work in a wig went without incidence, a few people commented that I had a new hair style and said it look nice, I wore a short chin length bob wig that is smart and very understated, I feel like a huge weight has been lifted off my shoulders now I have got that over and done with. Have a lovely weekend everyone. XXX