Hello everyone – it sucks a bit, this, doesn't it? I really didn't know how much I liked my hair and eyebrows until they started going. I was diagnosed yesterday, but I had the inkling 3 months ago, lost my eyebrows about 4 years ago, noticed the weird hairline loss (white hairs all fall out, leaving wispy black hairs) about a year and a half ago. I want my white hair back!!) and have been studying the hair and eyebrows of other women of my age (and older) for some time now. No, they don't look like mine! I'm annoyed it's taken so long. Maybe I could have saved some of it?

The treatments look rather horrid – and not necessarily effective :-(. I'm very much in favour of medicinal herbs and diet ­– so hints along those lines would be helpful. Herbal equivalents for the drugs – calming anti-inflammatory herbs – calendula, chamomile, say?, saw palmetto instead of finasteride... and I want to stop whatever I do that causes it.

This is a list of stuff I've used/done/had that might have caused it. I'm wondering why it's on the rise, and what we all have in common. Please let me know if anyone relates to any of it? I'm thinking about going for acceptance and a wig, but I'm still getting away with what I've got left, as long as I don't tie it back, and thought I'd have a bash at saving the rest....

7 years breast cancer survivor (but no chemo or radio), SPF 15 moisturiser (now stopped, but the loss continues. For a while after cancer I was careful what I put on my face, but relaxed when I realised I was going to live), used to dye it (but this only began after I'd stopped), massive stress, progesterone cream, very occasional oestriol cream (naughty, I was supposed to put it elsewhere), enteroviruses - Epstein Barr and cold sores, chronic lack of sunlight, lowish Vit D levels (not considered worthy of attention by docs), 5 days out of 7 swimming in low chlorine pool (lazy about washing it out – but loss seems worse since I started trying to protect it), latex swim cap, goggles, regular sauna/steam room, concomitant chronic fatigue (no ME diagnosis), allergies to pollen, cats, dust, mould (dampish flat), wax earplugs, eyemask, sleep difficulties, low temperature is normal, feel the cold badly, incredibly good organic diet (!) – reduced dairy, chocolate habit – addicted really tbh – but it's good stuff (85% organic), red wine (in my time I've really put this away, but I've had a more reasonable relationship with alcohol since the cancer dose), not much make-up – occasional lipstick and lipcote, very little use of hair products, and even then I tend to use nice organic things... can't think of anything else. Oh yes, I'm sensitive to wifi, and stopped using it for a while but started again, because the wire pissed people off. I do spend too much time on screen. Now for example. Other symptoms are patches of mottled skin, vertical ridged fingernails, nails falling out.

I'm 61. Unwillingly partnerless. Having a problem accepting the ageing process, given that I'm still hoping to attract some sort of male companion and bedfellow (except for sleeping). Maybe this is the point? I wish I didn't mind so much how I looked – which used to be the case.

It's a shock to find out how significant a loss hair loss is. I think it's about identity more than attractiveness. It's one of the things that gives us visual individuality, and is taken away in some institutions – along with clothes and possessions – and in situations where status is lost and abuse fairly normal. But I suppose in the outside world it marks you as different, and could become your identity.

Hoping for answers! Or even just responses!

Hi Sarah, I'm so sorry you have to be here, but happy you have beat cancer!  The rest of it though, the hair stuff- does suck.  I am interested in your herbal approach, I didn't know about palmetto instead of finasteride ( which has what sound like horrific side effects) which is one of the reasons why I ended up not taking any meds at all for this.  I am going now to google palmetto!

Thanks Minter!

It's just a guess and worth trying I think... anti-androgenic. It'll be months till I see a dermatologist (NHS) so I'm on my own for a while and I've decided to work out a regime of herbs, diet &c, with relaxing/stress avoidance the number one priority! I'll report back with any other ideas... Maybe I should move this to a discussion thread? Not sure how it works yet.

Hello Sarah, you asked what you should be doing.  It is everyone’s individual choice to take the drugs recommended by dermatologists or not. The science seems to indicate FFA is caused by something in the environment.  Most likely a chemical. Personally I would check out the EWG website and make sure any soap, shampoo conditioner, dishwashing lotion etc does not contain those chemicals. Check the post from Geri on this site that adds additional chemicals to avoid.

you mentioned you are low on Vitamin D which is needed for the immune system. With your doctors approval you could start taking Vitamin D. I also had low Vitamin D and B12and take both vitamins. I thought I had a healthy diet with fruits and vegetables but was surprised when I turned up with low Vitamin D and B12.

i admire your attitude to find out what you can do to help yourself and do it!

Hi all, a review of current drugs for FFA has just been published, just google Nonsurgical hair restoration treatment: Cutis, cutaneous medicine for the practitioner.  Dermatology July 30 2019.  This covered the regime of drugs my dermatologist prescribed, oral Minoxidil, dusteride and spironolactone.  Bearing in mind my deem said I had FFA & female patterned baldness...Sarah you definitely need to treat your low vitamin d, I too had that at one stage, tablet s are available over the counter in Australia Ostelin, my dose was 1000iu daily.  Low vit d implicated in a lot of auto immune disorders as well as depression, poor bone health..Hope this is helpful

Yay or nay...hot weather makes the bumps of  “basketball “ and/or “chicken” skin more noticeable? My jawline is really lumpy bumpy right now. :(

Hello Sarah,

If you’re willing to consider taking accutane 20mg, in my 3.5 yrs of research and personal experience with this crap disease (though any disease sucks!!;), it’s the best shot we have at stopping the loss. I remain on it for 1.5 years now and the loss stopped appx 10 months into it. I have other things at play: other meds, supplements, eating gluten free, organic, and for the last 7 months, vegan. Got my d up to the 70 range. 

Anyways, google isotretoin (accutane) and ffa and you will see the study from Poland where appx 75% of the FFA patients who took it for a year, then stopped, then were checked 1 year after stopping, had no further loss. Compelling compared to every other study and I think I’ve seen them all!  Another study just popped up on google scholar yesterday with a similar med stopping loss but it was only on one patient.

In summary, if my sister or daughter or friend was diagnosed, I would say get yourself on accutane 20mg daily immediately (no side effects for me btw), ixne gluten100%, do your best to go free of all animal products (it is indeed doable and enjoyable!), stop using anything with chemical spf (I use all herbal makeup and skincare now, and henna to color my hair, zinc oxide sunblock from my herbalist), manage your stress better, and get your d level 60’s-90’s. 

All the very best to you! 

Jamie

illustr8r- EVERYTHING is worse for me in hot weather! My skin, the texture of my hair, my sweaty itchy tight forehead. Does anyone get red "hot spots"? I have one on my temple now. Ugh. So frustrating

I've tried to google the  review of current drugs for FFA has just been published using the terms Nonsurgical hair restoration treatment: Cutis, cutaneous medicine for the practitioner.  Dermatology July 30 2019.  Doesn't give me results.  I have received some ResearchGate hits.  They send requests to authors.  I used to have a Research  Gate subscription when I was a college/university  librarian--but now that I am retired, I can't list any place of employment.

1. Hi Elizabeth, I will try and down load to this forum, as you probably don't want to give me your email address

Does anyone have any suggestions for a shampoo & conditioner without the harmful chemicals?  I have a list someone posted that I carry with me & I’ve got rid of products with those in them.

methylcloroisothiazolinone

limonene

linalool

fragrance

dodecyl gallate

Hi Donna. 

Just saw your question and thought I would reply. 

I use the shampoo and conditioner from Green People and their line Neutral (it needs to be that line or else their products contain limonene and linalool). 

They also have a 24h facial mosterizer in the Neutral line without the ingredients we try to avoid (at least as far as I know..). 

The ingredients for the shampoo is as follow: 

AQUA (SPRING WATER), SODIUM COCO-SULFATE (FROM COCONUT), COCAMIDOPROPYL BETAINE (DERIVED FROM COCONUT), DECYL GLUCOSIDE (DERIVED FROM CORN), ALOE BARBADENSIS (ALOE VERA) LEAF JUICE POWDER*, CAMELLIA SINENSIS (GREEN TEA) LEAF EXTRACT*, ANANAS SATIVUS (PINEAPPLE) FRUIT EXTRACT, YUCCA SCHIDIGERA (YUCCA) STEM EXTRACT, MARIS SAL (SEA SALT), CITRIC ACID, GLUCONOLACTONE, SODIUM BENZOATE, GLYCERIN. *83.3% ORGANIC

Thank you so much for your comments everyone - Jamie, Toby, plf... I'll deffo look into all these suggestions! For the next month or so I'm going to take Mg, Zn, B vits, E, D, probiotics, and glutamine (think my gut needs healing), low/no gluten, topical german chamomile and rosemary essential oils shaken up in water, and I'm looking into immunomodulatory herbs like astragalus. Accutane sounds interesting. I don't think I'll be able get it from my GP, but I'll ask.

I'm avoiding the swimming pool which may be a bad thing :-(  because it was my form of meditation. I'm looking for replacements for lippy. Even the organic shampoo I was using has linalol and limonene... I stopped sunblock instantly, am now rather tanned! Jamie - what make of sunblock is yours? Btw I wonder if the vit D connection and the sunblock connection are connected?! Also I had the idea that as it's a kind of self-attacking thing, I'll be kinder to myself, instead of ticking myself off for things and thinking I should be doing better.

I've told a couple of my friends, which helped a lot.

I do regret not making the most of my hair while I had it... totally took it for granted... and because of that I want to try and make the most of the rest of everything, or simply be more grateful for all the good things. I did that after surviving cancer, but let it slide... it's so easy to forget! Lucky to be alive :-)

Hi

I was told by my dermatologist at Mass General to use only mineral sunscreen with zinc.  This summer I have used Aveno Mineral as that is what she recommended.  She also suggested Vanicream line for cleaning and moisturizing.

Since I gave up using any product with chemical SPF and fragrance it seems I'm in remission but what I've lost is gone sadly.  I may look into transplant if FFA is truly done.  So depressing.  Head bands, Toppix, and Joan Rivers Good Hair Day are my friends!  Also until I had my brows done I used a product called Wonder Brow Gel, it is great! 

My dermatologist has a strong hunch FFA may be caused by the use of chemicals in our skin products.  I would love to know what we all have in common to have FFA.

Another ingredient that has been linked to FFA which was discussed here earlier is titanium dioxide.  Titanium Dioxide is in many things including sunscreen, facial moisturizers, makeup, sparkle cream, bronzer, and many otc and prescription drugs.  Do not put any sunscreen above your eyebrows and wear a hat - that was the suggestion and I am taking it.  I have scrutinized all of my lotions, pills, makeup etc and have thrown a bunch out. I do not use any chemical SPF. I use zinc oxide for sunscreen.

I started acupuncture for autoimmune. My scalp is calmer with less itching.  I hope that not using any product with titanium dioxide will help.

I have a shampoo/conditioner recommendation that I believe has reduced my scalp discomfort:  Free and Clear Shampoo by Pharmaceuticals Specialties.  It can be purchased on Amazon has no added fragrance or harmful chemicals.  It is also gentle on my hair.  They have a styling gel too, which is chemical free.  

Hi 2Dachsunds,

I appreciate your comment as I was also wondering if that ingredient was the culprit after I saw a journal article that showed the presence of titanium dioxide in the hair shaft of FFA patients. I looked at my skincare products and numerous ones contained it, including my daily foundation. In fact I could not find any liquid foundation in the drugstore that did not contain that ingredient. So I might order one online (that is very expensive) to get a foundation without titanium dioxide. I too stopped applying sunblock near my hairline (I am a sunblock nut). I hoping this will cause the FFA to go into remission. The weird thing is I have not had any of the redness or itchiness of the scalp that others have mentioned. Just started losing hair. I also have not lost any eyebrow hair or any body hair. Just at the hairline.

Yes,  ohnonotme, it is hard to find cosmetics without titanium dioxide.  It is also in toothpaste. I went to Whole Foods and all of their eyeliner have it so I ordered online from https://www.omiana.com/ and I ordered a powder as well. I got some Dr. Bronners and Weleda toothpaste. The excedrine migraine I am not sure how to replace but I keep looking!

It’s fall where I live-and just like that-my hair seems thinner and has had a mild shed with evidence of more hair in the shower drain. The summer was great for the most part and my pixie looked really good from all sides-even the front. Today, my bangs are stringy and separating making my temple loss more obvious. Dang it.

It seems like blepharitis is another forever issue. It clears up when I use OcuSoft wipes and soap but 8 days is the limit for not addressing it daily. *sigh*

Regarding blepharitis, my eye doctor recently gave my husband and me a handout on blepharitis. We do not suffer from it and never heard of it. Apparently blepharitis is common in hot, humid climates such as in Florida.  Occusoft was one of the suggested treatments.  I did not know that there is a correlation between FFA and blepharitis.

Since using OcuSoft my bottom lashes have returned, my upper lashes are thicker and since I wipe over my eyebrows too-they’ve thickened up too. Of course, not returning to pre FFA days but at least improved. Glass half full...

Love Occusoft wipes. They really help! My eye dr also has me using Celluvisc eye drops which seem to stay on my eye longer. Steroid drops did nothing for me. The other thing I started using at his recommendation is Lumify eye drops. Great to use if your eyes are red!!! When my lashes disappear, I use Rapid Lash as it always works for growing them back. 

My eye doc is putting in tear duct plugs this Friday. Has anyone had this done and did it help with your dry eye?

CurlyK - I love your new hair! It's been a while, I know, but I'm still here and still losing my hair and not wanting to take Finasteride etc. I've been following along on the FB group - different vibe there - people are more set on taking any meds or injections out there. I've lost a bit on top over the summer, but still manage to hide everything under the curly hair. 

I saw a new dermatologist in Paris in May who wants to restart doxycycline and minoxidil. I have been very irregular in the latter and am not sure I want to deal with the former. Has anyone been taking these regularly - and what side effects or benefits have you had? 

Hope you had fun in Amsterdam Curly, bisous. 

Hello all! I had no idea that dry eye could be associated with FFA. My eyes have been driving me crazy. I’ll try the Occusoft wipes.

My hair texture has taken a turn for the worse now that it’s fall as well. It all seems to come and go for me which is so strange? I decided to give New Wash shampoo by Hairstory a try. It takes a while to get used to because there’s no “detergent” so it doesn’t lather but my hair feels thicker and my scalp seems calmer. 

I’ve never tried doxycycline but I’m curious what others think. My overall thinning seems to be worse so I think I’ll try minoxidil again. Ugh. . .

Oh man, yay another thing to do with FFA, well that explains all my eye problems then!   I've been using Lumify during the day for a couple of months and Sumilasan allergy eye drops at night, especially if my eyes have been exposed to something itchy or irritating.  Er, that is like everything, every day!  This routine seems to be the best for keeping my whites white anyway.  I've tried pretty much every dry eye drop there is for so very long and was still stuck with weird red/yellow whites, hated it. always looked like I 'just had myself a J' or was on zero sleep haha!

I am going to look into the Occusoft wipes and the Rapid Lash, thanks for the tips :-) 

AnnieMay, I've used Hairstory, it is great!  I only stopped because, well I am not sure why I stopped, probably because of the price! Though in the long run it actually isn't that expensive.  I guess I just keep searching for that magic hair stuff ;-/   I've been using moo goo shampoo and conditioner for the past several months and am equally as happy with it- Also, I don't use any meds for FFA, the side effects (to me anyway) are not worth it and nothing seems to be 100% effective.  I use boost n blend to hide the thinning and color my roots darker and that has seemed to help for the time being.  But the hairline keeps going back and back, so it is only a matter of time now. 

Halfbakedwho, good to see you back! 

1. Hola all, thanks for all the tips, will check out eye products tomorrow, seriously if they had a nurse clinic, the nurse would be on top of all this , suggesting non drug solutions for the side effects of FFA, unfortunately big pharma cology companies have way too much influence, keep up the dialogue girls, it's fantastic

Yep, the OcuSoft products are wonderful. I bought OcuSoft Platinum that is for use in the shower. It’s like a soapy mousse and a teeny bit goes a long way. So, no matter if I’m having issues or not I use that in the shower daily. I use the wipes at night too-especially if I sense trouble ahead. My right eye has it the worst. 

Ugh.

Halfbakedwho which FB page do you follow?  Do you feel you get any new tips/ideas from it?

CurlyK does the Rapid Lash irritate your eyelids at all?  I tried Latisse and my eyelids did not like it at all!  Very red and irritated skin after that.  I guess that is a common side effect for lots of people.

Hope everyone had a good summer.  I know I am ready to welcome the fall and some cooler weather!

I have blepharitis as well. My dermatologist and my eye doctor recommended doxycycline when my scalp was especially inflamed and my eyes were especially bad ( constant chalazions, red eyes, etc.) It seemed to be working but then it seemed to be triggering migraines. The dermatologist then had me cut the dose in half and try again. It was a big help! Everything calmed down and has seemed to remain stable for sometime since stopping (Knock on wood!). To be safe, however, I use OcuSoft Plus wipes (I cut in fourths to make them last longer) regularly.

Hi everyone, I haven't commented for a while, but I'm still here, still wit lpp/ffa & it's slow, chronic, ongoing symptons. Has been 7 years now for me since the onset of the pain burning odd scalp feelings & noticeable hairloss. I commented some time ago, & if you go back through the forum comments from past several years there have been many comments regarding ffa/lpp suffering from blepharitis/dry eye etc, including myself. There is a reference to this  connection on Dr Jeff Donovans website donovanmedical.com/hair-blog/lpp-and-the-eye "Lichen Planopilaris and the Eye". And I think he got the info by referencing a research article in review optometry 'Scalp disease patients at risk of MGD & Dry Eye. I told my GP 6 or 7 years ago that I felt there was most likely a connection.It is common with other autoimmune conditions as well as hypothyroidism.

Thanks for the tips on relief with Occusoft. Will put that on my list of things to try.  & ps Curly K I LOVE your new hair ... does it work the same way as your last style where you keep on, wash & wear for several weeks before goingback to salon for readjustment; & how easy is it to care for? 

Hi again, yeah my eyes are dry too along with everything else : b but my doctor says it's menopause. My hair is really thinning a lot on top and I'm not doing a dang thing about it aside from watching it leave my head - I'm kind of frozen these days in terms of trying other stuff. The facebook page has some good info, yes, but it doesn't feel so private to me, and I get sick of the cult around Dr Donovan in Canada, who seems way overpriced and very patronizing - posting things that seem a bit blame-y and sanctimonious though I could absolutely just be overly sensitive. Don't tell me what to do with my head... etc. etc. I'll be back later must help my son with a thing. And CurlyK yes do tell about your new hair. And BTW am coming back to Florida in February : )

Halfbakedwho, I get the gist of what your saying about Dr Donovan. I sift through his site from time to time for info regarding lpp/ffa, however much of it I have already seen from researching Pub Med & other research sites. Some of the info on donovan medical however is iexplained in more 'laymans terms' which canbe helpful. But I find it odd when he describes his protocl for treatments as capable of stopping the disorder in many of his clients, .... when there is no research that proves catagorically that the treatments actually stop or slow down the disorder (xcept maybe ?one using finasteride or durasteride). There are women who have chosen a no-drug path (due to concerns of potential side affects &/or other reasons) & the disease can continue very slowly for many years, flare for periods, then calm down for periods of time, or stop as suddenly as it started with or without drugs (without any conclusive understanding in the research of why/how this happens). At this stage I simply can't fathom how the derms could possibly know if  the ffa/lpp is responding favourably to the drugs on offer or whether the flaring & settling of symptons are part of natural course of the disease. !? So often the literature seems quite contradictory.  I can relate to your description of at times 'feeling frozen' ..... when choosing not to use the drugs on offer, as the chronic continuance of the disease can make it all feel pretty hopeless, like a run-away-roller-coaster, ....'out of control'. In the end tho each of us ultimately have to make our own decisions after trying to gain as much knowledge as possible on this ghastly condition .... there are no right or wrong choices .... Again thanks for listening & for everyones input here, so grateful for this forum and to all here for your support, 'cause nothing has helped me more while dealing with the daily challenges of living with this  xxx 

Ps: I meant t ask hbw did your biopsy show AGA as well as LPP,  & do you feel th minoxidol is helping in any way ?.... my understanding is it has no affect on Lpp/ffa, but may be helpful for AGA

Wow Jules, you have encapsulated it all..so true, my daughter says why do you keep getting emails re FFA when you have decided not to go down the drug treatment regimen..and it's probably true, why do I need to be reminded..I am still holding. Out hope for a cure, but let's face it it's a woman's issue..so it doesn't matter that much.

So moving forward....ha ha.i have nil control over condition, I'm loved and it will be a wig...killer in the heat , but at least I'll be alive! PS it sucks

Plf, exactly right- I do continue to read info about FFA thinking maybe they have made a breakthrough this time!  But, with so many bizarre variables with this disease it probably will never happen.  I do find myself reading more and more about women who have completely lost their hair and how they deal with it as this is the road I am on now as well. At this point I don't even look the same anymore with my new hairline and I have accepted the fact that within a couple of years if not sooner my head will be shaved completely and it will be a wig, hats, scarves or just my big shiny head out there in the world and people will just have to deal with it.  

Plf, I also have 'bouts' of searching for any missed 'breakthrough' information on the disorder, hoping i'll find something new or positively enlightening. (Wishful thinking I know)... so I get it ... we all need Hope, it's what keeps us going; but I feel I have to be as reealistic as possible in facing what's likely ahead of me ..... like the wig, scarves path (as Minter said) & thinking about how I will manage to cope, reading stories & finding inspiration from others who are having to deal with all that. Plf, I resonate with same words/thoughts you have of a future relying on 'wigs' .... but then thinking of the 'heat' (espec in our Auzzie summers - getting worse every year), but then trying to be grateful that I'm alive, loved, & otherwise healthy !!  .... still, it sucks!

Okay ladies, show of hands if you’ve developed a lot of milia (those not pimple white spots under your skin) since your FFA kicked in. This summer my chin and cheek chicken skin area has just broke out with them continuously. I even had one in my eyebrow! Ugh!!!

@Jules What you wrote a few posts below is spot on. :)

Does anyone know what percentage of the population has FFA?  The United States National Institute of Health's website lists it as a rare disease.

Not sure if the link below will work. Doesn't give hard numbers, but apparently FFA is increasing in frequency of occurrence, as there is now considered to be "an epidemic" of
cases:
https://www.ncbi.nlm.nih.gov/m/pubmed/30815440/

Thanks for sending the link.  I have printed the article.  FFA must be going from a rare disease to now being considered an emerging epidemic, with increases of cases seen at major hair referral centers.

My dermatologist says the increaing number of cases of FFA correlates with introduction & use of SPF in moisturisers etc over the last 20-30 years & disease onset time ..., think about it ... how many under 30yo have it compared to (I hate to say it) middle aged & older?

I've had FFA for around 8/9 years. A couple of years ago my doctor advised me to have some allergy tests done. These showed that I was allergic to a ethylhexate salicylate which a common chemical found in sunscreen. I discovered that this was in my makeup, sunscreen and foundation. So basically I was using it all the time. I swapped onto natural skin care, foundation without sunscreen and mineral sunscreen. My hairless has now stopped or is so slow that it's hard to notice and I'm off all meds. I've also been discharged from hospital check ups. I've had some regrowth particularly round the temples and nape of my neck.

I've swapped onto mineral sunscreen which has titanium. dioxide in it. I know that this  is causing concern at the moment but I haven't had any problems with it. Having said that I don't use it anywhere near my hair line now. I use products from Green people and they have some interesting information re titanium dioxide. There are two types of it, one good and one bad. they use the good one and coat it to make it too big to pass through the skin so if there any any problems with it then the problem must be topical.

I think it would be a really good idea to be tested for allergies as it was a game changer for me.

Hi Jayne, . thanks for your input, fantastic you have some improvement, it is so good to hear a positive story on this site. I have one query, did you have redness around the hair follicles when you had the loss..??

Jayne, thanks so much for the info and tip to get an allergy test. I wonder if other ladies here have had a similar experience?! However, I’m so thrilled for you. To have found something that actually seems to work. Wow. Do you know if it was a standard test you got or did they test for specific things due to the things you use (like lotion, foundation etc)? Sorry if it’s a stupid question. I’m not sure how these tests are performed. 

I use the brand Green People as well. Didn’t know  the  info about Titanium Dioxide.  If you want to avoid TD altogether I believe you can, if you just use their Neutral Line (I use that) - I doubt they have sunscreen in that line, so very cool with your info. 

For the the last year or so I have changed all my products. Use Green People for facial, shampoo and deo. For makeup I use a Danish brand called Miild. A lot of their products don’t contain TD (I have a list of their products and which ones don’t contain it, if anyone is interested). All their products have gotten  the Nordic Swan Ecolabel and they are allergy certified. So maybe it’s worth to check out. 

 I still have loss in the front, but hardly any inflammation (that I can feel..). My hair breaks and then falls off after a while. So sad. Scarfs and headbands are my trusted friends these years.. or hmm not sure if I’ll call them friends as I’m frankly quite sick of having to wear them every.single.day. But they do their job and I try make it stylish and go for the bohemian look or laid back “yoga look”.

So far  I haven’t developed the white shiny band some people are talking about. I still get velus hair (to my deems surprise). And I still haven’t lost my sides. I don’t know if it’s a sign that switching to these products have helped or if it’s just my individually “take” on this disease. Which is another frustration. That we just don’t know if all our efforts are even worth it.. hm. But to me it at least feels good to know I’m actually trying and it also feels good to know I’m trying to eliminate as many bad chemicals as possible. 

Thank you you all for being here. ❤️

Hi Miss Mymble

The test was done by the hospital and they tested for all sorts of things but you could also take some of your own products in with you.

Thanks for your information re the products that you use. I will certainly look into them.

I decided to try and make my hair as strong and healthy as possible to try and maintain what I have left ( luckily with quite a bit of styling I 'm still ok). I take biotin tablets, use rosemary oil three or four times a week on my hair( this is supposed to be a natural minoxidil which works after 6 months use) and use olaplaex hair system which seems to make my hair thicker and stronger.

This is a horrible condition- some days I I feel ok with it as really I've been very lucky but then other days when its windy  or damp when I just hate it.

Hi Pif

Yes I did have red circles round each strand of hair for a long time. I've taken anti biotcs, hydroxychloroquine, had steroid injections, had all silver fillings removed ( as I've previously had oral lichen planus). If my scalp gets a bit itchy i still use elidel cream but I don't need to use it often.

I have a feeling that there are different triggers ending in the same condition. I firmly believe sunscreen was mine. 

Just wanted to mention that I tarted using the occusoft wipes the other day & I definitely can notice a difference, my eyes don't feel itchy and irritated and just weird anymore so that is a very good plus indeed, but the one annoying thing is having to rinse after using the wipes! Anyway, will be going for my annual eye check up in the next month or so and will mention all this to the eye doctor so he is aware.

@Minter If you use OcuSoft Lid Scrub Plus you don’t have to rinse afterwards. I bought OcuSoft Platinum too which is for the shower. It’s an already bubbly solution that you wipe across your lids and also don’t have to rinse after. So, I do that in the morning and the wipes at night.

Im happy to hear your eyes are doing better! :)

The weirdest thing - in the middle of my comment here my computer just switched off! A Mac - not supposed to do that shirt. If you know what I mean.

ANYway as I was saying, I am going to have to get out of my lazy-denial hair-space and look into more natural cosmetics and sunscreen. If you have other recommendations, I am all ears, which you can even see more of these days. If you are into that. 

Some days my hair situation feels scary, and I know you all get it. I notice the top thinning and thinning... I'm 53 now and I wonder how things will be in 2 or 3 years - this all gets terribly redundant. I don't think I will like or tolerate a wig. It gets hot here, we don't have A/C, and I look ridiculous in headbands. 

So I'm still pretty "frozen" in my half-assed so-called treatment plan of FFA. I did go ahead and spontaneously swallow a Doxycyline this morning, and guess what?! My FFA is GONE now!! I swear I had to trim my sideburns down with a weed-whacker. Take that Dr. Donovan! 

As per usual it's not a good idea for me to start writing about my FFA after about 8PM GMT +2. I can't hold a coherent thought. Thoughts are down the drain with my hair, and like my scalp swollen and torpid. 

Thank you for staying with me up till here. Have a good rest of Thursday.