Hi all, I am having 2 cups of spearmint tea ( organic) a day have to order on line as mostly peppermint tea in the shops .this is supposed to do what Finasteride and duasteride ( excuse spelling) do, I think it has helped with hair volume, I also find the Aveda dry hair shampoo great for adding volume to my hair .  Keep up the positive energy ladies..you definitely need it on this journey.  

.

Hi Liz

I’d love to see some photos if you are happy to share.  Thanks so much.  Great to hear such good news. Xx 

ps Plf I’m off to buy some spearmint tea! 

Pps Cannabis oil medication now available on prescription in Uk!  I’m holding off on Finasteride for now but obv that seems like to most  appropriate next step if I can risk the side effects! 

I still haven’t swallowed the Finasteride though I filled the prescription. “Trouble urinating”= one of the side-effects. Too scary. Thank you for the spearmint tea idea. Pourquoi pas...?

Oh and would love pictures too please Liz, thank you!

Brewing my spearmint tea now!  Hope this helps.

I called my insurance company today to ask if they would cover my hairpiece and it’s maintenance. I pretty much knew the answer would be “no” and I was right. They will cover wigs for cancer patients who have lost their hair due to chemotherapy but not those of us who have lost it permanently due to CA. 

I agree, here in France, it's the same. No cancer, no hair cover. Yet, we have an illness, this isn't for narcissistic gratification, "fun with hairpieces" experiment. I worry about the future cost, and how I will tolerate my hair when it's hot out. Not there today, but didn't (again) take the Finasteride this morning. 

Do any of you find that your scalp is just sort of strange where you've lost or are losing hair? It looks shiny and odd - but more than that, it's a strange texture - a bit squishy - hard to describe. 

I am so glad you are here. 

Just a bit ago, I was telling my sister-in-law how I am lucky it's "just my hair" without any big health impact. She said, "but, it's your APPEARANCE, that is SO IMPORTANT"!!  And here I am, trying to keep some perspective...  People can be strangely unhelpful, but I don't blame them, it's hard to know what to say. 

So glad you are all here for me to ramble on. Bises. 

I have United and it doesn't cover hair. I agree with the concern over continued costs.  I am not quite to the wearing hair stage yet but will be soon enough. When I think about how much it will cost over time it is a bit daunting to think we would pay so much over our life span for something that should just be naturally on our heads!  Frustrating for sure.  One thing I am trying to learn from this is it doesn't pay to worry about what will come your way as I sure never saw this coming!  Ugh!

My dermatologist told me at one point that this will eventually burn out, anywhere from 5-10 years. Once it is done, it does not come back. Anyone else heard this?

I was diagnosed in 2013, but my hairline began receeding in 2011.

I was on steriods for several years, but that did not slow down the hair loss, so I stopped the medication. I have been to specialists, who recommend woman's rogaine, but I have not seen any improvement. 

Halfbakedwho, yes, my scalp where there is no hair is shiny, and feels "thinner" and a bit more sensitive than the rest of the scalp.

I appreciate reading about your struggles and your spirit!

Just my comments about questions people have asked on medication:

 have been using FInasteride for a year or so with no problems. However, I'm not convinced it's really doing any good either. The intention is to make the rest of my hair a bit thicker, as I have always had very thin, straight hair.  It may be helping in that way a bit, but hard to tell. It will not stop FFA fallout.

I've also been on hydroxychloroquine for over 4 years with no issues. You need regular eye checks and need to keep out of the sun (rather tricky here in Australia) Dermatologist is taking me off it now, as it does not appear to be doing any good anymore. It did seem to at first. I've never really had much itching or redness, just hair fall out, so maybe this has been keeping that suppressed. I shall see what changes when I stop taking it.

To all- since all this began the texture of my hair has completely changed from healthy and thick to thin, dry and straw like? This has probably been a subject before but I don't understand why this is happening? maybe it's more about menopause and changes in hormones I don't know?? 

Hi All

Annie May, my hair now exactly as you describe...  I do think menopause must be in the mix somewhere.  That’s what I’d initially thought prior to diagnosis.  

Halfbakedwho, my scalp exactly same as you describe.  I’ve only got the spongy bit on front scalp area and I wondered whether that was visible inflammation?  Quite dramatic hair loss at sides  and that’s not spongy but the skin texture looks strange.

Prior to knowing I had this condition I noticed I could no longer ‘do’ anything with my hair so I tried a keratin hair relaxer treatment then went on holiday in the sun!  I’d hoped it was all a reaction to that (which if I’d known I’d never have done).  The loss and change in my hair has been so dramatic over past year... 

liz and curlyk look amazing with their ‘new hair’ and that is keeping me going.  Finding somewhere in Uk to have this done ‘professionally’ seems tricky.  It seems like big business.  As HBW said it’s not some ‘narcissistic...experiment’  I don’t want to have ‘celebrity’ style hair achieved by adding extensions.  I just want my own hair not to leave my head. 

Effects of medication - hydroxychloroquine 1 or 2x daily for past year  , it seemed to dull my appetite and I lost weight (or was that the shock of diagnosis and fear of future?) and had rash on chin until I reduced to 1x daily, I also had dermatitis around nose for couple of week, but no other noticeable effects.  I’m on 5th week of doxycycline and whilst my skin feels better I noticed some weight gain and it seems to negate effect of my low dosage hrt which I’ve taken for past year.  Sleep is so disrupted I don’t know how I function some days.  The doxycycline does make me feel nauseous until I’ve eaten.  Overall medication has not stopped or slowed hair loss or shedding but perhaps reduced burning and stinging which from psychological perspective does mean I can have some moments when it’s not at forefront of my mind!!!  Can I just add until this condition popped along I was reluctant to take a paracetamol!! 

Did anyone notice any stabilising after first year?  It would seem reading all threads it sometimes has periods of calm before it flares again? 

Thank heavens for you lovely ladies.  I do wonder whether there is a subsection of this group managing this on there own and without the finances to consider hair replacement and wonder how on earth they are coping? This is yet another reason we should campaign for more awareness, research and some contribution towards ‘new hair’.... the psychological effect on our health and wellbeing from this condition is huge.   KarenD - you are absolutely right about ‘worry’ and not seeing this coming!!! I try so hard not worry about what else may be lurking round the corner and to enjoy the moment.  Good luck everyone x

Interesting about the spongy scalp - me too, only in the front. At about age 45, it seemed like my hair texture changed and I too did the keratin treatments, which I have been warned off of now. 

In the beginning, when I first noticed this back in 2015, it was only the sides that were noticeable at all. I thought maybe I didn't have FFA b/c the top was okay looking. Fast forward...winter-spring 2016 I "noticed" without noticing - a lot of thinning. But I was in denial and just would forget about it. 

Now I am not particularly worried anymore... just kind of waiting and watching... thinking again about the cost and the comfort. I am relieved there's a cosmetic solution, so I'm no longer worried. The cost will just be a pain in the a**. The comfort - I'll have to get used to it - there's no air-conditioning here so I am concerned about the summer. The hair lady told me that that could be difficult - sweat and glue under the fake hair - ooky. OK so maybe I AM worried - lol. 

I wonder about the hair powder warning - I may try some anyway since it seems to me that NOTHING I do or don't do makes a whit of difference  : /...  

Still just leaving the Finasteride in the box, but taking all the other things including the low-dose antibiotic. 

Bonne nuit.

The white band of shiny white skin that marks my hair loss is too smooth, tight and strangely numb. Sometimes I still get big peaking flakes along my still there hairline. This happens most frequently if I don’t towel dry my hair well and my hair/scalp dries out before I blow dry it. 

Right now, my skin is most worrisome. It’s very pitted and I feel like I need heavier make up to smooth it over. I’m also get red half inch long and almost as wide red blotches on my lower cheeks and chin. They flake around the edges and eventually turn into brown spots.

Every day I look in the mirror and wonder how much younger I’d look and feel if I didn’t have this dreadful condition. What’s life like for a normal 54 year old woman?!? *sigh*

Illust8r, is the skin problem related to FFA? I can’t remember what you’d said about this before...

@HBW I think it’s related because of the red blotchiness just under the surface that I see. I get these breakouts mostly where my pitted lumpy skin is. The skin form of lichen planus maybe. They come and go-similar as good/bad hair phases.

I wanted to give an update on where I am at with my FFA and the use of cannabis. I tried to enter it in the comment area here but I had too many words. I have attached in a pdf. I attached the handouts here as well as in the pdf. I am not sure they will be available through the pdf. Let me know if the attachments are not available

Update%2011-2018.pdf

Ailment%20Guide.pdf

Consult.pdf

Epigenetic%20control%20of%20skin%20differentiation%20genes%20by%20p...

Ethan%20Russo%20ECS.pdf

human-endocannabinoid-system-e1500759390507.png.pdf

SMJ%20CONSULTING%20TERPENE%20PROFILES.pdf

tale-of-two-cannabinoids.pdf

Terpenes%20and%20the%20_Entourage%20Effect_.pdf

The%20endocannabinoid%20system%20of%20the%20skin%20in%20health%20an...

Has anyone tried TatBrow, a microblading pen tool for eyebrows? I just saw an ad for it on Instagram. Looks interesting. You can draw on individual hairs. It’s waterproof and won’t wear off by the end of the day like powder and pencil.

i think I’ll try it. Similar products on Amazon from $7-12.

I've seen the ads for TatBrow and would love to hear your thoughts. My eyebrows have faded so much but now it's too close to the holidays to get them redone. I literally couldn't leave my house for 10 days last time I had them done. But feeling so self conscious now. Ugh

@AnnieMay My brows have faded too. I use 3 pencils (light brown top, dark brown bottom, fill in gap between with powder, draw individual hairs with brown/black pencil) and brow powder to make them appear normal now. Oof! Too much! I’m waiting till spring to get my microblading done again.

I’ll give this TatBrow a try and let you know. :)

I've seen the TatBrow also and thought, hmmmmm, I wonder.....??? Since because of stupid FFA my lovely microblading lines have all blurred together :-(    

Rose, I just saw your post.  The clobestatol I use is a solution.  It’s not a lotion or a cream.  It’s clear & like water & I only need to use a little bit along hairline.

I just saw this article posted on the LPP Facebook forum. A glimmer of hope, maybe? For some anyway. There seems to be no predicting how each of us will respond to said drug-if at all. Even though I’ve chosen the drug free route (except for Clobetasol) I still sorta apprehensively consider trying something if it’s kidney friendly and has shown results. 

I remember some time ago a commenter here said to get on finasteride and/or dutasteride. It had helped her a lot. Anyway...read on:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809380/

Thanks for the update illustr8r, that research paper via probably the first one that I have read that really supports Finasteride/dustaride, I would love to know if anyone on this forum has had success and no side effects from these drugs.  I have a script for dustaride but didn't start taking medication as was worried re liver and kidney implications..as usual now I'm in a quandary what to do!  Might start up another post and see if any other members are on this drug with success, thanks again

OK, ok... Thank you SO much for the paper, Illustr8r - I was prescribed 5mg/day of Finasteride that I have been afraid to take, and this paper made me say "ok, hell, why not" - but in the paper, she only took 2.5mg so I cut it in half. I figure it's better than not trying it at all. So I started today November 25th, and I will let you know if I wake up with a renewed hairline. Not on the LPP FB forum, but maybe I will check that out (only on the FFA FB forum). But I am trying to slow down my internet and social media use (ha!). So you didn't see this post. 

Oh halfbakedwho, your on to it!  I am trying to find my script. But think I may have thrown it out when I decided not to go down the medication route..which means another visit to the dermatologist..or I suppose I could ring her up and get her to send one out..I'm procrastinating....hope to hear good news halfbakedwho, fingers crossed, 

Illust8r, thanks for your post. Interesting! And it makes me wonder if it would be worth a shot to go down that route. Didn’t the paper say it only took 3 months before they noticed some positive progress? If so, one could try it out for a short period - just to see if one would be a candidate for it. Hmm dunno.

Halfbakedwho, hear hear for waking up to a renewed hairline!! :) Cool you’re trying it out. Very interested to hear your experiences with it. I just checked the cost of Finasteride in Denmark. And it seems crazy expensive. Is it like that in France as well and do you get some of it covered by your national health insurance? I haven’t spoken with my doctor in Denmark about this yet (the dermatologists I’ve seen are both in Germany). But as far as I can read it seems like our healthcare only cover some of the expenses of Finasteride if you’re  male - as it’s not supposed to be given to female. 

Hello ladies, I am on 5 mg of finasteride per day. Plus clobetosol and my dermatologist said to go gluten free and milk free. It takes a few months for the finasteride to get working. I have experienced no side effects from finasteride and my general physician said it is fine if I am on finasteride the rest of my life.  

Five months ago my FFA was extremely active and driving me crazy.    Fortunately, for the past 6 weeks, I barely feel the disease.   I should say that I was on prednisone for 20 days about 4 months ago. However I credit the prednisone for reducing the active intensity of the disease and the article on finasteride appears to be working for me.  Last trip to dermatologist, I had baby hairs in the impacted area. I was not even hoping for that, I just wanted to halt the disease. 

I am 62 in the USA and my insurance thru my employer does cover this.  Hope this helps someone. I know how you feel. Best of luck and thanks for sharing the article!

Does anyone know if finasteride is covered by Medicare in the US?  I am afraid my FFA is becoming active again because of a return of the itching.  I am also afraid to actually go see the dermatologist because I am also afraid of adding another drug to the cocktail of cardiology drugs I am on for life.  When the FFA flared up before, I was on hydroxychloroquine for over a year.

Oops...I think the drug I was on before might have been doxycycline--anyway it was an antibiotic that is also used to treat malaria.

I do not know if finasteride is covered by Medicare. Your doctor or the pharmacist may be able to tell you. 

To young women who may want a baby, do NOT take finasteride as it will harm the baby.

thanks.

Check with your insurance company.  If you are on Medicare you probably have your prescription drug plan covered by a part C medicare PPO or HMO, or part D if you are on traditional medicare.  Or again check with your pharmacist to see if finasteride is covered.  

I thought I was in remission and decided to go off finasteride 6 months ago, and my symptoms are coming back :(  I have noticed some hair loss and have had itching. I started back on tonight after reading the article about how helpful it has shown to be. It was helping me and I thought I did not need It anymore. I was wrong!

I decided tonight to try topical Saw Palmetto. It’s supposed to have similar qualities as Finasteride. I’ve had good luck with Castor Oil so let’s see what this stuff can do. It says expect results in 3 months. I’m going to be watching my temples closely.

Good luck ladies with Finasteride! Fingers and toes crossed for future success stories! 

I was on finasteride for 6 months but had to stop due to breast pain and a lump that developed. Had it checked out in breast clinic and all okay but I stopped finasteride orally due to this. The lump vanished about a month after stopping.

You can get topical finasteride from a pharmacy in Italy so I’m trying that instead. If it does anything amazing I’ll let you know. I’ve been on it for over a month and so far no weight gain or breast symptoms though.

Hi I’ve been using Saw Palmetto for the past couple of months, whilst no lost hair has grown back, what’s left continues to grow thickly and quickly after a hair cut, and, thus far, my forehead appears to have stopped getting any higher. I’m also taking curcumin , and at night a tablespoon of black seed oil. I’ve also found meditation helps as every clinician I’ve seen, and God knows Ive seen quite a lot, some of the leading experts in the UK , and they have all stated stress makes the condition worse. But then Stress is the Doctors stock answer to everything these days.

Again, I am not really on the internet so this is just an exception. Really, really exceptional (OK I am trying here). 

EVERYTHING or practically everything is covered under our French system. Only homeopathic stuff isn't, and yes if things are being prescribed out of context. But my Finasteride is covered, Miss Mymble. My Minoxydil wasn't though, and it was awfully expensive. 

I tend to react a lot to medicines so I feel better taking half the dose for now. 

Wilhood - I am so annoyed at doctors attributing everything to "stress". Notice that they would most likely not give this catch-all meaningless explanation to MEN. True enough, it is more stressful for women to live in the world - but not taking our health issues seriously certainly doesn't make it less stressful...

I went through that with my old doctor in my old town. So f-ing annoying... 'scuse me. 

HBW, cool to hear Finateride is covered in France. I’m sure the same or some similar rules applies for DK then (but I will check it out to be sure).  It was the whole off-label that made me suspicious about it not being covered. I actually think I’ll at least discuss this treatment with my dermatologist now. I’ve also read that some women with PCOS who experience hairloss are prescribed Finasteride (and similar drugs). Somehow that just made me a little more relaxed about it. Not sure why. Maybe to know we’re not the only group of patients who are prescribed off-label drugs. 

Your comments about the stress. Yes!! 

Lara79, yes please let us know how it goes with the topical Finasteride. Does your doctor prescribe it? I would prefer to use it topical instead of orally. But had no idea that was possible. So thanks for putting it out here.

I found a doctor online who prescribed it but he has retired now so managed to get 6 months supply and then will have to see if my NHS team will prescribe if there is evidence it did any good.

It looks like a version of it may be released in a couple of years though:

https://www.belgraviacentre.com/blog/topical-finasteride-male-hair-...

This whole thread of comments is interesting.... and so glad that many have found hope through this great group of people that are all suffering from this horrible disease that doctors don’t really know how to treat.  We are kind of like the guinea pigs in an experiment to see what might work without killing other organs in our body. I, for one, am not willing to take on the risk of those side effects not knowing what damage it could do.  I bit the bullet and invested in hair... a bonded unit.  I still have enough hair around my sides that the unit can be attached with links and then bonded to my forehead where the hair has receded.  History shows that the hair isn’t going to grow back - even with all of these treatments talked about on this website, so I took the plunge.  Here is a picture of the unit....  

Looks amazing!

Most definitely amazing!! What resilient and resourceful ladies and encouraging to those moving towards taking the plunge.  Thank you 

I love it Bloomie Kid :)!

I just came across a picture of myself on FB - To me, my hairline looks sooo high and it's higher now (to me) and thinner, a month later. 

I am going with the Finasteride to see what happens - it's sort of a last hurrah before I start to seriously consider the helper hair. I was just at the wig place last month (or was it the beginning of this month??) and it seems that since that appointment, the top is even thinner. And I can understand that others don't notice, that I can still get away with just pushing my hair forward...but I have lost a LOT of hair over the past two months or so (is it going faster or is it my imagination? Do you all go through this waxing and waning?) ... and if the loss keeps up at this pace I will have bonded hair too by March or so! 

BUT - as time goes by (I think this is interesting too) my acceptance has gotten a lot better. I am more just "whatever" about this. Sometimes in the middle of the night I fuss with my scalp and worry, but mostly I just am very glad that the bonded-hair-option exists. Worse comes to worst, I will have to blow my remaining hair straight to fit in with a hairpiece. Again, I can live with that. The only thing that concerns me ( a bit) is how will I deal with it when I go on my hiking trips? Oh, first-world problems... 

You look absolutely beautiful with your new look Bloomingdalekid!  Thank you so much for posting it and giving us all something positive to focus on! Can you tell us how it feels on your head?  Do you notice it continuously?  Is it hot?  Give us the details on how it is to live with your new hair!  

It truly does help to see those of you have gone the hair route looking so natural and lovely on those days when we are a bit overwhelmed with what lies ahead.  Makes it easier to imagine how life can just go on and we will all be fine!

Wow, Bloomingdalekid, so nice, good for you for finding a solution, good luck to everyone else 

Halfbakedwho - I actually did a Brazilian Blowout of my naturally curly hair to fit in with the wavy hair in my unit.... it all blends in so naturally.  I’ve had the piece for about two weeks and initially the links hurt my head - awake or asleep - kind of like the first few days after you get braces tightened.  It disappeared after a few days.  I don’t even notice the hairpiece any longer - it does feel strange when you have to itch the top of your head - rubbing instead of scratching.  You feel the fake scalp.... but getting used to that too.  The bonding on the forehead is really new - and it’s already started to pull up - but my hairdresser said she will teach me how to handle that on my own.  For now, I sleep in it, wash my hair in the shower, I can swim with it.... it’s like my own hair.  AND, I just wake up in the morning, brush it and do very little else and it looks good.  So far, I am happy.  I do live in California, so it doesn’t get that hot here normally - will have to see how I do with it in the summer.  For now, all is good.  

@BloomingdaleKid Wow! You look terrific! Thank you for sharing your new hair with us. Very encouraging!! Everything is a big leap with this awful disease-drugs or no drugs, wig and what kind and when...! What a journey!

FYI Got the TatBrow. It’ll take practice but it does give you eyebrow looking strokes. Goof up and it’s a bit unforgiving. I think I’d be handy with a single stroke brush instead of the 3 fork one. Navigating the eyebrow arch is a little awkward.

You look really good Bloomingdalekid .  Where did you get that piece & was it expensive?  

Simply beautiful Bloomingdalekid! You just gave me so much hope. I live in Glendale CA and would love to know how and where I can have a hair piece similar to this one made. I’m willing to drive to meet your hairdresser and see if she can help me with the styling. Thank you so much for sharing your photo with us!

Bloomingdalekid you look fabulous! I’m so happy you found a place to get bonded hair. They are out there ladies! 

I’ve been going through a stressful time and have been itching a lot lately in my temple area and down onto my face. Does anyone have a recommendation on how to deal with this kind of itching? I’m not worried about losing more hair as it’s mostly gone but the itching is annoying. 

CARF has a new website up. I encourage y’all to peruse it from time to time as they update with new research as it becomes available. I’ll be writing my hair story over Christmas break and putting it on their site. 

Stay strong and know you are beautiful inside and out!