Annie May I have rosacea for 10 years now; before a year and a half I wasn't that red any more; but then my perimenopause started and I developed Hashimoto and FFA. 

In my research about this disease I came across an interesting fact; other than viruses which can trigger Lichen (hpv and herpes virus), it seems that allergy or sensitivity to metal dental and other implants or fillers can be a big risk factor for autoimmune diseases. I do have one dental implant and am considering to remove it but before that I will make the Melisa metal sensitivity test. 

Anonymous NAC and L-Tyrosine are to be taken with vitamin D3 (according to IAT). Unfortunately I don't know for how long neither how much of vitamin D3 exactly should be taken, but I'll give it a try.

I sent a message to the group and some ppl responded as my email informed me but where is the responses and my original message? I think I am confused how this group works!

 Ladies, I want to share with you what seems to be helping me. I changed my diet, I eat gluten free, low carb and low sugar. Before bed I take two probiotic. I try not to stress as stress causes shedding.  I'm attaching before and after pics.20180317_153452.png

20180313_211124.jpg

Adie503, Awesome. How long between before and after pics?

The before picture was taken in July of last year. The other picture was taken earlier this month. 

@Adie Wow! You are making me reconsider my diet again! I’m so happy for you!

@Lynn555 I received your post in an email but I can’t find it on the Board here. I’m not sure why. Maybe copy/paste into a new discussion topic (link is above the comment wall) or post it into this section. Your story is very similar to others here. :(

everyone, I'm reaching out in desperation as I don't know what is going on. I don't have a diagnosis at this time but I know my hair is thinning but I don't know why. About a month ago I noticed the hair above my ears was so thin and the hair that is remaining is wispy and lacks pigmentation.

My scalp is tingly, itchy, and looks scaly under the hair. Now the front of my hair is starting to thin and the hair looks wiry and doesn't lay down flat. My head is so tingly and sometimes in yhe shower the water hurts my scalp.

I can't see my doctor until March 29th but I did go to a walk in clinic. He said my scalp looked fine but prescribed betadine scalp lotion. And I had bloodtests done. This showed I am anemic whivh I ahve known for 4 years. I'm takimg supplements but they aren't working very well.

I don't notice much hair shedding. Maybe about 40 in the shower. When I brush my hair only about 10 come out. But my scalp feels terrible. Sore, tingly and the itchness is keeping me awake at night along with the stress.

I don't know what to do and I feel like no one believes me. But why would my acalp feel like this when it never has before. I am also under extra stress as my father has been diagnoised with terminal cancer. It seems this all started when I found out about him.

I also can see from pictures that my maternal Grandmother had frontal fibrosing alopecia. She also had celiacs disease. My other grandma had rheumatoid arthritis. I don't know if any of this is connected. The doctors thought I had lupus at one point but since had been ruled out.

Sorry for such a long post. I'm freaking out.

Visit Frontal Fibrosing Alopecia at:

20180315_131635.jpg

20180309_195345.jpg   here is a picture

And one more20180214_180048.jpg

20180209_092127.jpg    what do you guys think? Such embarassing pics. 

Lynn555, how long have you been noticing your symptoms?

Lynn555, Is your appointment with a dermatologist?  My suggestion would be find a dermatologist who is an expert in hair/FFA to help you find your answers.  Maybe tell us where you are located and hopefully somebody could recommend a specialist who they have found that has been of help to them.  Sometimes it takes a few tries to find a doctor who really specializes and can help with the diagnosis and treatment.  Sorry to hear about your father's diagnosis.  

CurlyK, I have always had very fine hair but quite a lot of it, hairdresser's always commented. Then recently, I guess over a month ago, I put my hair up in french braids amd took some pics. I was shocked to see that my sides had become so thin and as though my hairline had receded. 

Then I started getting weird tingling and itching all over my scalp but primarily on the sides and front of my head. It honestly feels like bugs walking. Then the pain in the shower started when the sprays hit my hairline. I also noticed it on my back sometimes. I also started getting itchy spots randomly all over my body, but not super itchy, just annoying. 

KarenD, I don't have an appointment with a dermatologist yet but I see my family doctor on the 29th and am going to ask him for a referral. I was endlessly googling the symptoms but my thin spots didn't match any other hairloss and then I came across frontal fibrosing alopecia and it was an ah-ha moment. 

I'm still getting tingling and itching on my scalp, and over my body too but mostly on my scalp. I don't see any rash or bumps but the skin looks very white and scaly underneath. I'm in Victoria BC Canada. 

@Lynn555 A lot of us self diagnosed and clued in our doctors to what was happening. It took me 2 years to finally get diagnosed after hearing “as we age” as an excuse for my hairloss concern. Get your iron, Vitamin D and B12 levels checked. During my last flare, I was so itchy from head to toe, impossible to explain and impossible to cure with lotions and potions. Turned out I had a Vitamin B12 deficiency. After that got fixed I felt 1000x better. Too much sugar and gluten also tends to make me itchy.

i have fine hair too and I used to have more of it. I’d say I’ve lost about 30% overall with my temples and sides being the worst. For now, I can hide it with a pixie cut. Fingers crossed.

Hi Lynn555- I'm so so sorry for your Dad's diagnosis. Your story is similar to mine as this started for me last year when my Dad was diagnosed with leukemia. A very stressful time for me. I truly believe that stress exacerbates FFA so please do whatever you can to take care of yourself.

Like many of us here my hair was always thick (actually too thick) but when I started to lose my eyebrows I went to my internist and she did thyroid tests, Ferratin etc but nothing. Do you have eyebrow loss?

Then I started to lose patches of hair in front of my ears and my temples and all they told me was to take Biotin. Honeslty all I heard from everyone was "it is age related hairloss" (I was 59). But I knew this was different.

I finally demanded a referral to a dermatologist but she told me to use minoxidil and sent me on my way. And then it started to feel like my scalp was SO sensitive (itching, burning. .). It comes and goes but it still hurts if I comb my hair the wrong way and taking a shower can be so painful. It totally feels like bugs crawling all over my head and it's awful. This and the effects this has had on my skin are the issues that affect me the most.

On my own I again demanded a referral to a dermatologist that specializes in hairloss issues. At my first appt she knew immediately that it might be FFA. And a biopsy confirmed the diagnosis. 

I'm sorry this is so long. This has been such a journey for me. No easy answers for any of us. It seems that many of us share similar stories but we are also different in many ways.

I would try to go to skip some of these exhausting steps and get a referral to a dermatologist that specializes in hairloss and FFA if you can. 

I don't know what I would do without the support here. Look at the previous posts here. They help alot. We're all here for you. 

Hi AnnieMay and illustr8r, thank you for your posts. No I haven't noticed any eyebrow loss right now. But my eyebrows have been sparse since I plucked them back in the day. :)  I just fill them in daily. I'm 43 and recently my cycles have been changing and I am perimenopausal. So maybe that has something to do with it as well. At the walk in clinic I was told to take biotin as well. I've actually been taking b12, Vit D, iron and a mutlivitamin daily for months. Only my iron is low. Everything else is normal. 

Pretty much it is in the stage that no one believes me except for 1 nurse at work who said yes it is thin. My hairline is very moth bitten looking. I barely brush my hair lately due to how tender it is but it seems a bit better today. The pain and tingling and itchy was so bad about a week ago I thought I would go insane.

Basically, I just want a diagnosis so I can move forward. I don't want to use rogaine or steriods at this point. I've been looking at wigs instead and hats and scarves. I just don't want to jeopardize my health with medications that probably won't work. I've been sick previously in my life and I finally had surgery and am feeling myself again. I feel sick at the thought of losing my hair but at the same time I am grateful to not be in chronic pain anymore. 

But yeah I think the stress of my Dad's diagnosis plus my husband was at sea when I found out and then a pipe burst in our house, and I got a really nasty virus that was going around, I think this all has pushed me over the edge! 

Thank you all for listening and understanding. The worst thing is feeling so alone in this and not having anyone understand. 

Hin Lynn555, Sorry to hear of your Dad's diagnosis, such a tough time.
It's great that you have been taking b12, Vit D, iron and a mutlivitamin daily, that will help with your general health. I would also recommend that you read up on 'gut health', so much research now points to the fact that a healthy  gut helps in so many ways.
I'm not saying it will help with an ffa diagnosis but eating foods that don't cause intolerances in your body will help your body overall and will definitely keep up your defences so you can deal with stress etc.
I was diagnosed with 'leaky gut' some time ago and although I was already mostly vegetarian , I also cut out dairy which resulted in life ling excess clearing up almost right away.
My vit D, B, C were very low, I now take supplements.
This book by Dr Michael Mosley explains a healthy gut really clearly"
'The Clever Gut Diet' available on Amazon of course.
My thoughts are that if you support your body from within, feeling healthy will help you deal with what is going on in your life in general.
I hope this helps, such a difficult time for you.
Liz Lov

Other good books along these lines:
Medical Medium and Thyroid Healing by Anthony William.
Have you had your thyroid checked by the way? 

I have been writing a terribly long post and see more of you all chiming in. Such a truly good group of women!! I have to send my reply in parts as it’s so long. So much to say! I do apologize for the lengthiness but wanted to share and hopefully some info will help...  

Lynn555, Along with the others, I am sorry for you and your dad and all of your family for the difficult diagnosis and all that goes along with it. And now this. I feel for you in your desperation and pain/discomforts. My first complaint 2.5 yrs ago was to my internist regarding my disappearing brows. She did lab work and found thyroid fine. Ferritin (iron) was low so we started treating with oyC iron. (Take with OJ! It boosts absorption by about 30%!). End of story except she was agreeable to rx Latisse per my request (a friend took it and her brows started to thicken and I was like hmmmm). (Sidenote I later got microblading and LOVE it!) Anyways, two months later when I saw a pic of myself with hair tucked behind my ear, I was like wth it looks like I’m going through chemo on the left side of my head! Asked hairdresser a week later and he said he noticed something last haircut or two (said NOTHING...grrrr!) and this sent me into a panic. Can’t believe I didn’t notice on my own. Embarrassing! Made a derm appt but that wasn’t available for 6 weeks. 10 days later my sister was doing research and she figured it out :( Devastating! It seemed dead-on FFA. She sent me a link to the Belgravia Center for hair loss in the UK (I live near Chicago). I sent in pictures, filled out a questionnaire and sent it at 11pm. I got up for work in the AM to see an email where they basically told me straight-up that I had FFA and needed to get a biopsy to confirm. Which I did. So that was the beginning of things 2 1/4 yrs ago.
I have read sooooo much and tried soooo many things and seen a slew of doctors. I have learned much from this blog. Sometimes I have found it good to read the blog and others it was too hard emotionally so I step away.
I have so much to say and I will try to keep it to a minimum!! .....

I believe  that there is a genetic predisposition to this disease. I believe that there is at least one environmental trigger to this disease, namely chemical sunscreen. Chemical sunscreens are  known endocrine disruptors and I believe that prolonged use of chemical sunscreen ingredients on my face for a number of years damaged the oil quality and follicles of my hair On and around my face as well as my four arms. I feel that stress can be a factor and I also feel that being in. Minute pause was a factor as well.

 As of recently I am right along with several of you who are believing that leaky gut is a part of all this. My research has shown me that leaky gut can cause autoimmune disorders as well as other diseases like cancer and mental health disease, as well as gastrointestinal disease. For any of you who don’t know, wiki gun is when we take in  food that is processed or has chemicals, and also some medications. These disrupt the layer in our intestines which then allows digesting food to get through. Then our bodies respond by going on a sort of attack but the attack goes awry and other body systems are attacked/damaged.  So in the past two weeks I have started myself on the autoimmune protocol diet. It is very strict but not all of it is forever! One expert did say though that those of us  was with autoimmune disease should never ever have gluten again. That will not be fun but if it will make my body healthy and happy I will comply! Oh how I will miss you cookies and birthday cake! ...

As far as medications are concerned, I believe that the best thing going right now is treatment with Accutane. Jess shared a research study out of Poland back in October and after taking Accutane for one year and then stopping for one year.  FFA patients showed a 75% chance of halting progression of the disease. Accutane has something to do with straightening out the oils/follicle problem in FFA.  started Accutane about November 1 of 2017 so we shall see how that goes. Also in my research I have seen that a drug called Actos seems to straighten out the damaged lipid pathways in our follicles. This drug must be used on a short-term basis, under one year, because of the possibility of developing bladder cancer. So the bottom line is that there is something wrong with our oil and follicles, seemingly predominantly around the face. 

For emotional help, as I was struggling with too many crying jags, melt-downs and just a sense of this disease not allowing me to enjoy life so often, I went to a really great gal who taught me “tapping” or EFT. It is like meditation and touching acupressure points and self-talk all wrapped up together. It seems hokey but I believe that it has made a big difference! Taking stress to a manageable level is as important as healthy diet and medication! Just google EFT if interested!
Last, (and you thought this would never end!) I will see a functional medicine doctor 3/29. Combo of western and holistic medicine. I really need someone to look at the whole picture and be able to take some time with me. Also someone who will look at the nutritional aspects of illness/wellness. I am super tired of internists/rheumatologists/dermatologists who don’t/can’t look at the whole picture and really pull this apart!
Hoping something I said helps some of you. While I have been quiet and just reading on and off for the past few months, I appreciate everyone’s sharing, caring and even your sense of humor at times! XO

 It’s late here in Chicago and I had decided to start dictating these posts versus typing on my phone. So I hope that the typos/AutoCorrects that I didn’t proof for have, if nothing else, given you a laugh :-) I do actually just have two arms ;-) and menopause has been a hell of a lot longer than a minute  LOL! Good night all! 

Adie503 your beforeand after pictures are amazing; Did your hair grow back? Is this possible with FFA?

@Pascal  the hair I lost on my forehead has not grown back.i don't think it will. That skin is shiny and thin. So not all of it has grown back but I really believe if I don't stress and continue with this diet I can save the hair I do have. When first diagnosed I saw strands of my hair everywhere, not anymore. No one can tell me that this disease is not "gut" related. I'm no longer bloated, I don't feel lethargic after eating, I don't have a cotton brain sensation, all things I would feel after eating carbs, gluten and sweets. 

AnnieMay, a study was just published that reports a link between FFA and rosacea. I also have rosacea. It was at its worst about 18 months ago. My cheeks were flushing and super hot for no reason almost every evening. It seemed to have calmed down for a while but is now acting up again. Here's the link to abstract. http://www.jaad.org/article/S0190-9622(17)32328-9/fulltext

Liz Lov thank you for your suggestion, I'll find and read Medical Medium and Thyroid Healing by Anthony William; Jess I also have rosacea and also Hashimoto's and celiac disease. 

Adie503 I think as you do; it has to be gut related; I have celiac disease, and more than 15 years of serious problems related to gluten consumption. In my case, everything started with celiac disease which unfortunately was undiagnosed for 15 years :(

Why can't this comment wall be organized by themes? This is so confusing...

Hey guys, there has been a change in my scalp. I now have raised pimple and bumps. I'm going to the walk in clinic as soon as they open. It was really burning and itching. I want it to simply be folliculitis but I think it is scarring alopecia. My picture matches another online for this. Here is my scalp. My husband took this last night with his macro camera. IMG_8823.jpg

Wouldn’t it be marvellous if a dermatologist undertook to carry out an analysis of all themes that emerge on this FFA forum?!  There are so many  similarities and of course individual differences.  Surely the anecdotal information is crucial to a deepening understanding of the difficulties we face with this condition and the seemingly global scattergun approach to intervention!  

Afraid- So true. I get most of my information here. Lately for me everyday presents a new and confusing symptom (my scalp feels like it's on fire) with no real understanding if it's a side effect of the steroids or tacrolimus or if it's FFA and no clear path to resolving any of it. Totally agree that dermatologists should be looking here to learn more about what we face everyday!

And Lynn555- please update us. I'm having the same issue right now

Hi all,  just wondering if many of this grouo  are also on tne FFA private Facebook group.  I recently joined it and it is growing weekly. There are so many of us out there!  

MJ

@MJ can you give me the link to the facebook group? Thank you. 

@AnnieMay,  I went to a walk in clinic today and he doesn't think I have folliculitis. I was hoping this was something simple. Doesn't look to be that way. He took a scalp swab but I don't have the results yet. Probably tomorrrow or Wed. He is more concerned about my low iron levels. I'm not absorbing iron but not sure why. I'm taking Ferramax 150 mg twice a day but my level is only 23 and in Oct it was 24. Lowest level was 10 in 2014. So he is looking for a bleed now. Have to do a stool sample (gross). 

He did give me Taro-Clobetasol scalp lotion for thr red bumps/rash. 

So far that is all I have for the update. 

Lynn555  I get something close to that at the top of my forehead and sides. I've traced it to Black castor oil products or product chemicals. I've used Nuetrogena tsal shampoo with Free and Clear conditioner. It feels sore but no bumps or redness. My iron level ran low too. Good luck with treatment.

Oh wow re: castor oil . Do you know that all this itching started right after I used castor oil! So before that I noticed how thin my hair was around my sides and forehead. I decided to try castor oil. My head was so tingly and itchy but I thought it was the rosemary oil I had put in it. The next day I just used the castor oil and same itchy, burning feeling. So that was the end of that! 

But I did that weeks ago. So I would be surprised if I'm still reacting? I also only use fragrance free products, never perfume or added scents. My moisturizor for my face is La roche posay Lipikor balm, which I've been using for years. 

I've been wracking my brain trying to think if a product caused this but I can't think of anythign besides that castor oil from a few weeks ago. Weird! 

The last time I did castor oil was Feb 20th. I saw I noted it on my calendar. Maybe my follicules ended up clogged? 

@Lynn555  Did your dr. check your kidney function?

I experienced weird hair symptoms for years- flat, lifeless, odd ways it liked to part itself and some shedding. I went in to a new dr. to find out what was happening and she discovered raging high blood pressure, anemia and low vitamin D. After a bunch more tests, I was diagnosed with stage 3 chronic kidney disease. If not for my vanity, I'd have never known and It was almost too late! My hair had suffered for years because of low iron/D  but it bounced back after I got my iron straightened out-then menopause hit. :(

FFA is so weird. Castor oil has eased my tight scalp and has given me a few extra sprouts on my crown and sides. I find it very soothing and have never had a break out from it. It could be that your flare has coincided with the use of castor oil (but maybe not, as well). 

Hang in there- dealing with this stuff is exhausting. It does get better over time but there are still sad days for sure.

The page on Facebook is LPP Let's Put Out the Fire. :) 

Lynne555, I don’t know how to share the link but if you do a search on Facebook under Frontal Fibrosing Alopecia  FFA it will come up.  The background is blue puzzle pieces and it says it is s closed  group with 426 members. 

Also, I recently started using black castor oil on my right eyebrow.  I am continuing to use Rogaine on my left which I have been doing for years.  I am testing to see if the Castor oil works as well.  I gave it a little try last week on part of my scalp and had some moderate itching and burning.  I have never really had much in the way of irritation associated to my FFA so I think it was the castor oil.  It doesn’t irritate my brow.

Hi, are there any ‘success’ stories for the management of FFA on the Facebook site? 

MJ, thanks for posting about the Facebook group. I looked them up and submitted a join request. 

Lynn555, I am so sorry to hear of your Dads diagnosis & on top of it all you are having to deal with the hair/scalp issues. Unfortunately the scalp symptons & hairless you describe does sound like ffa/lpp but only a biopsy will reveal for cettain what type of disorder it is. I have resisted treatment, & had all the scalp sensory symptons of tightness tingles & creepy crawly feelings, espec in earlier stages, but have experienced a lot of tenderness, pain, itchiness, & minute papules which are often quite sore (tiny pimply like bumps which are inflammation from upper portion of follicle). The fine white scale around top of follicles is typical in lpp/ffa, (hard to see unless derm uses magnifier)....from my experience many of them don't look properly or clos enough at the scalp in order to make a more accurate diagnosis. I've also had odd hair issues with the egrading of quality & growing out wierdly kinky, courser & dryer (before had softer looser curly/wavy hair). The hairshafts in lpp can change due to fibrosis in the hair follicle. It is a bit of a mystery tho why some of us seem to have all the symptons & others might have the loss but with little or no scalp sensitivity. Keep posting & let us know how your biopsy goes....there are many women on this forum with a great deal of knowledge on the disorder, more so than many doctors/derms seem to have. We are all here to support each other; I have been so thankful & would feel so alone & lost without having found this forum, & support from all the ladies here. We all understand the distress & anxiety this can create,espec in earlier stages.

Has anyone pariticipated in a clinical study for this disease? I am checking into a study at our local University. Just curious. 

@Anonymous I have not participated but I would. Where is the university? 

There is a study at the University of Minnesota, Dermatology Dept. I am checking into it. I saw it online, and emailed for info. Haven't decided yet 

No success stories that I have seen yet, but a lot of support as here. Pics of hairloss and hair pieces and wigs have been very helpful.  Also just looking at everyone’s page and realizing they all have this thing but you would not really know is somehow reassuring.

@Anonymous I am participating in study at Duke University in Durham, NC with Dr. Olsen. I filled out a permission form and then filled out a long questionnaire about places I have lived, beauty products I have used, etc. I don't remember everything since it has been more than a year since I filled it out. I haven't been asked to update anything since. I see her every 6 months. She talks to me about how I think I am doing. Have I noticed any more hair loss? Does it seem stable? Have I seen any growth? Am I feeling any side effects from the drugs? Then they take pictures of my hairline and she usually renews my prescriptions. I have an appointment on Wednesday of next week so I might ask her for an update on the study if I can remember. 

@MJ I requested to join the Facebook group but my request is still pending. Is there a vetting process? I can send my name and FFA story by private message if that helps. Thanks. 

I participated in the study at Mass General Hospital Boston only reacted to fragrance. Now using unscented hair products.  I went for a follow up this week and Dr. says no inflammation may be done!!!!!  9 month follow up.  Hoping the damage is done as bad as it is.