My dermatologist prescribed oral Minoxidil as well as spironolacts and dusteride..I have postponed commencing all meds as I had read about the initial side effects of shedding and I didn't want that to happen before my daughters wedding, ( which is this week) it actually was probably a good thing as it gave me time to think about if I wanted to take meds, yes as once you start you are on them forever!  So at this stage after reading everyone's posts I'm pretty sure I'm going down the same treatment pathway 'denial'...not at all brave.just hoping for a miracle

@Pfl I’m not taking any meds except for Clobetasol when I see red dots around my follicles in the front and sides. I too pondered Minoxidil but the initial shed scared me as what if what falls out doesn’t come back-or only does with continued use? My mindeset is of “do no harm” and wishful thinking! 

Beez - I am doing the same thing - Clobetasol 2x day to at least slow it down. It feels a bit compulsive/impulsive -  a bit superstitious. Like knocking wood, like checking all the doors etc. 

It is so hard for me to tell if there's a difference since stopping minoxidil, aside from the disease progressing, obviously, but as you all know - it does what it wants no matter what I throw on my head. I  never noticed an initial shed with minoxidil, but I noticed it made me feel a bit weird (heart rate went up, etc.). 

If I could, I would go back to getting my hair all nicely blown out, with twice-yearly Brazilian hair straightening. I looked so chic, and not "sheep". ; ) But that wouldn't hide the loss, as the mass of curly hair does today...

Denial is kind of nice, but when you come back to reality - red inflamed spots on your scalp - a bit of a shock to the system. 

The birds are singing outside, and I have a morning to work on my paperwork and other things. There's that... : )

Oh that is not a good side effect with minoxidil! I never heard about the heart rate & with my new found skill with getting every side effect that would happen to me :-/ from what else I am reading, probably best to not start it at this point of my FFA life- 

@Plf, good luck and congratulations on your daughter's wedding!

Thanks Minter, it's going to be a very special day, a lovely celebrating... certainly puts things into perspective..thanks again to all for the ongoing support

My hair doctor just asked me to quit using my Rogaine/Minoxidil for 2 weeks because I have been having dizzy spells lately and all blood work/eye doctor/nuerologist have ruled out anything else that could be causing it. I'm terrified to go two whole weeks without my Rogaine! They don't think it will cause a shed in that amount of time. Anyone else had to quit ....and what was your experience?

Christi I used it for 8 months and had to stop because my scalp became inflamed and scaly. Didn’t notice any increase in hair shedding from November til late March. I don’t know if the increased hair shedding now is from not using minoxidil or if it’s just the cycle of the disease (waxing and waning no matter what meds are used or not). 

Hi Christi- I stopped using it as well. I feel like it made my heart race too? and my scalp itched more. I haven't noticed any increased shedding. I feel like every time I use the topical steroid my scalp seems so sensitive and irritated and I thought it was supposed to help with that. I'm very sensitive to medications so it could just be me or the disease or ??. . .No one knows. . . 

Jeez it’s a bit scary tonight - I have a LOT of inflammation right where I don’t want it - right at the top of my hairline over what used to be called my « forehead ». Now there is less and less definition between what is « head » and « forehead » so I don’t know what to call anything anymore. No more sideburns, so that is also now just scalp, or « ex-sideburn ». 

In any case I’ve never seen my scalp this unhappy. No I am not more or less stressed than I always am (and understand that to mean I am always « more or less stressed »). I have been applying Clobestasal (I can never spell that) twice a day. More acutally, though I probably shouldn’t. I take my tetracycline. 

I am going to call the Dr. tomorrow... but I don’t know what he can do. 

Please share your experience of dealing with bad flare-ups, and how you handled it? Do you call your Dr? Do they change your treatment? Is there anything else I could do to calm this down? It’s obvious that the patch that’s inflamed is on its way to falling out - but if there’s something to do (that doesn’t require weird diets, or too-scary meds) please tell me. Should I consider injections? 

It feels like a G-D emergency... and my doctors are extremely unavailable : (

Thanks for listening to me vent. : ((

Has anyone tried stem cell to treat FFA?

@HBW I don’t have any answers and I’m sorry that you are going through a bad flare right now. This condition just sucks and it doubly disheartening when you are having a calm period which lulls you into a false sense of security-then blam-your head feels and looks like it’s on fire.

My last flare was helped by fixing my B12 deficiency, castor oil and Clobetasol. People on the LPP site take Zyrtec for itching. I have used that and it helps. Itchiness hits me st night for some reason. Take care HBW!!! I hope you feel better soon.

@PBSunshine I’ve heard of it but haven’t tried it. One person on another Alopecia forum had success with it but they didn’t have FFA, if I remember correctly. :(

I also take zyrtec, well, called Reactine in Canada, plus Clobetasol when I get the itchiness. Sometimes even benadryl as well. I haven't been offically diagnoised yet. I see a dermatologist in Aug. The weird thing is that I thought with this disease you don't tan where the scars are. But I have tanned and don-'t see any scarring, plus I see lots of minature hairs. I feel like could I have a receding hairline like a man? Weird. Soooo confusing. It seems like a long time to wait to see the dermatologist...I guess all I can do is do what I'm doing because there isn't a cure. I'm also trying to get my iron up as I'm anemic. I wish I had answers for you .. and I. Take care. I'm so sorry you are going through this. 

One thing that has helped me from freaking out is I bought a hair topper. And I also bought bangs with sides attached to a headband. Plus,I have a full wig on order. It might sound like overkill but I like to be prepared!! :)

I still look fairly “normal” except when I see bright sun shine on my hairline, I can see Red tiny bumps and thin hair.  I am obsessed with looking at it because I was just diagnosed two weeks ago.  

I had to cut bangs - it keeps me from constantly looking.   

Last week I was sitting on a “board” as I am treasurer of a ladies golf group this year.  After the meeting someone told me the sun was shining through my hsir and it “looked so pretty@.   I told her, “ don’t get used to it”.  

I am starting to tell people about this ailment.   That makes it real, in a strange way, it helps me accept what is coming.  

@Halfbakedwho, I'm sorry you are going through a bad flareup- antihistamines sometimes help and when mine was bad I tried acupuncture and chinese herbs which also seemed to calm my skin and me. If I could afford it I would go every week! I pretty much stopped using clobetasol except for very rare occasions as it thins out the skin and I noticed it happening along my forehead. I now use castor oil and tea tree oil and if I am really itchy take an antihistamine which seems to help- 

@BubbaLu, I tell people also- I mean I don't run around announcing it ;-)  but if it needs or seems to be the time or place say it, I will say I have FFA and explain what it is. It is not our fault we have this stupid disease!  and it does make me feel better and not so embarrassed about it :-(

thank you guys. I too tend to tell people - not everyone - but I don't feel the need to hide. I wanted to call my doctor but the afternoon is running by me - 

I too have a hair topper (well actually a wig that I want to cut up). I am just freaked out at how it seems to be going really fast at times, slower at others. Why why why? No one knows. If it were men getting this, there would be so much more available, most likely, alas. 

Hi halfbakedwho..just caught up with this conversation, it totally sucks, just when you think that you have come to terms with FFA, you go through a horror period...I am currently using a eczema cream called " hopes relief" it is available in pharmacies in Australia and on line, won't halt FFA but is great for the itch..I know this doesn't help..and I can relate to the fact you think all is going well until you wake up in the morning and their is a flare up.  Sorry no solution.., bloody FFA!

Yep, Plf is right....we all get lulled into thinking the FFA is cured or gone when we go into a remission type period. Even the doctors do; then all of a sudden it's back and we are obsessing in the mirror again. 

As for the little tiny hairs appearing....I have had soooo many people, hair stylists, family members say 'oh look, new hair growth' when I know it's actually dying hair. Those little baby hairs are actually old hairs that are doomed.

Halfbakedwho....I SO feel your pain. I just went through this. Increasing the ClobetSol helped the inflammation. Also, try a recipe recipe for Golden Milk or Turmeric Tea - it's a very powerful anti inflammatory drink that I use when my FFA is on the rampage or when I have very bad flares of arthritis.  Here is a link to the recipe I use. There are others that are more tea- like but I don't think they taste as good.

https://www.epicurious.com/recipes/food/views/golden-milk-turmeric-tea

So sorry you are experiencing another flare of FFA.  Likewise I find the relentless pace of progression difficult to bear.  I haven’t tried injections (perhaps I should have done?) I’ve used clobestal for 6 months and into month 5 of hydroxychloroquine..... all to no avail. Reading posts on this site are supportive but equally scary.  There seems to be no way to capture the views of those with success stories online? Only threads detailing ways of coping with the loss.  I hang on hoping for a miracle.  Big hugs x 

I've been reading that extra selenium for people with autoimmune conditions is helpful. Anyone?

So yeah, thank you all so much again. I don’t get much « itch » - it’s more just red and irritated. It is sort of slowing down now since I have been using Clobetasol 2x day, which isn’t what the Famous Dr. prescribed for me - the steroid he gave me is weaker (or seems so). But I take his tetracycline...

It seems that the past couple of weeks have cost me maybe a half centimeter of hair. I really notice it but I’m sure others don’t yet (unless you really look). I am wondering if I should go back to Dr. Less-famous, who prescribed a LOT of stuff (minoxidil, iron, blood tests)... the only reason being (a pretty big one) that this big flare-up has happened after getting rid of the Clobestasol and iron and minoxidil that she’d prescribed initially. Which doctor is right... and frankly the answer is probably both and neither... 

Dr. L-F wanted to do a biopsy, requiring me to stop the clobestasol for a month. I don’t WANT TO, it scares me to stop it. And why do a biopsy...??? 

OK All of this to say (as someone or all of you have already said) we are kind of doing DIY-throw-it-on-your-scalp-and-pray treatment gleaned from this or that Doctor or « doctor ». Minter, I miss going for acupuncture - I need to go back to that.

Maybe it’s a plot by the wig industry. Maybe we are evolving into the next form of humanity which won’t require hair (homo alopecieus) can you all tell it’s 3 in the morning here and I am up obsessing? Maybe just a little. 

It so much helps to not be alone. Bonne nuit. 

Half baked,

you do sound a little “off the hook” right now.  

I understand, I have been there.  It is a sad, mostly lonely journey.  It does help to have a lifeline that only the women with receding hairlines relate to. 

Just remember, my hairline does not define me. I am bigger than that.  There is always tattoos!   Or, hope for a cure.  

THere’s a hook, and I’m off it? Where do I find it? Should I get a hook tatoo? Defnitely off whatever hook I suppose. Bed is a good idea. 

A reminder CARF is having their patient conference in Philly

June 9th & 10th with a reception Friday evening June 8th.

This site gives you all the info plus registration options:

http://www.carfintl.org/patient-doctor-conference.php

@Halfbakedwho, you aren't alone. It is so frustrating, I mean really frustrating and I am using frustrating as I am being polite and don't want to use the words I really want to use to describe this horrible disease and what it does to our confidence and well being let alone what it does to us physically.

I've said it before, this slow incessant creeping hair loss is so incredibly maddening, I sometimes wish it would just all fall out and then I'd be done and that is that, I have no hair, deal with it and get on with life instead of this patchy thinning mess that I have to figure out what to do with every morning noon and night to look "normal".  

One of the worse things about what is happening to us is not knowing what causes it, how to make it better and having no options except to just go on and maybe try a cocktail of different drugs and treatments and hope for the best and our hair will come back which never seems to happen or do nothing and hope for the best which also never happens or do something in between and get the same results.  

@Halfbakedwho, I hope you can get back to acupuncture, it should help with the inflammation at the very least, whatever they do with those needles is awesome!  and I am agreement, what is the point of a painful biopsy at this stage for you.  I hope between acupuncture and western medicine you can find a treatment plan that works for you- I don't know french but I will now butcher the language and say bonne luck to you my FFA friend!

Hola Minter, halfbakedwho Etal...no drugs, slow loss of hair and eyebrows..got excited about underarm hair growth after years of shaving, no arm hair..no drug therapy..value my liver..yes will have to consider a wig...have messaged people that were on the site 10 years ago, they don't respond...so my conclusion there is no answer..no cure, could be worse..we just have to move on..that's not to say I'm no angry, sad  & very bloody annoyed..life sucks.. but I'm alive...brave tonight but in a mess tomorrow, sorry FFA friends it's our curse

@Plf, yes, yes- no cure, could be worse, have to keep on movin' on as they say!  But saying that, we all know it doesn't mean that life with FFA doesn't just suck at times :-(  

If it was just the hair or just the skin problems it might be slightly easier to deal with, but why does it have to be both and then on top of that have to have bizarre untreatable symptoms of both hair and skin, ugh.  

Oh thank you both, and Minter - I am up and down with this. I agree, let the damn hair all fall out, be done with it! But no, we will go with continuous creeping crud as a « look ». After a week of religious (prayers included) application of Clobéstasal 2x/day, the red dots are  no longer visible. 

I am living a pretty crazy life these days, and I hope it will calm down possibly next September. I spend three days a week away from home. Tonight, in another Airbnb. That’s neither here nor there, but... does my hair dislike travel? Or maybe my hair prefers to never be home? It’s like trying to figure out what my cats want, though that’s actually easier (they want food, duh). 

I only write on this board at the end of the day when free-association is in overdrive  (though it kind of always is). Now the question of course is ... how does my hair feel about this? Or more specifically, how does my scalp feel? Apparently, inconsolable... alas. 

• Hello lovely ladies..well made it to the wedding without any visible further eyebrow or hair loss...I'm still making deals yes even preying..that the disease has halted..yes again deniel.  As I said before no drugs, but now considered topical Minoxidil for eyebrows to prevent further loss..but then I think arrrgh what if by applying product I irritate the area and I lose more eye brow.
• Worried that if I microblaxed eyebrow s that eventually area will be scarred and even microblading won't be an option.  Thanks all and I hope today is a good day for all

Up and down, up and down- yes that is life with FFA @ Halfbakedwho! It stinks that you are living life away from home for some time yet, hopefully September will come soon for you and all will be calm again for you and your hair- PS, love your latest spelling of Clobetasol ;-D 

@Plf, Glad to hear the wedding went well!

As far as brows, I'm not an expert or anything about microblading- but if done correctly I don't think it really should cause scarring.  

Though I will say, because of my horrible thick bumpy FFA skin my technician said she is not going to do the microblading next time as it all just blurs anyway and will do a "powder" brow. I also still have some brow hair and I am thinking along your line, that I need to do something sooner then later to make sure I keep what brows I have left! I also use brow powder as if I don't, even with the brow hair they look shiny so a bit of powder neatens them up.  

But again, I still LOVE my brows and I am very happy I had them done! 

I have been putting Latisse that use to save my eyelashes on my brows (after I do my eyes). They have been growing in-not like "real" brows but they help the micro bladed brows look more real. My eye dr. told me that Latisse will becoming out with an eyebrow formula.

I went to the Derm on Monday and...I have new growth! I've gained a 1/4 inch! The area where she did the biopsy has filled in. The only explanation...castor oil. She said that I'm the third patient that has found relief and positive results with castor oil and she is going to investigate it further. Will what I have regrown stay? That is the bigger question. Wax and wane... I'll keep my fingers and toes crossed.

Thanks Minter & illustr8r, some great suggestions, lovely to hear something positive...better start being more vigilant with the castor oil and look into the Latisse, have a good weekend 

@illust8r that is great news and I am very happy for you! :-)

I sometimes dab a little castor oil around my hairline at night, but I have to admit I don't use it religiously as I don't wash my hair every day and the oil makes it feel like I need to wash it every day :-/ but I do use it on my forearms/hands every night!  I also need to get my butt in gear and talk to my doctor about Latisse before it is too late-

I have further appointment with my dermatologist next month, but as I haven't used any of the drugs she prescribed I wonder if there is any point keeping it?  Any further hair loss now and I think I will need a wig ..don't think I could be bothered with a ? Topper. Next on the agenda..wig homework

For those who have face papules: I still get hormonal acne and lately it has gotten worse so I bought a face wash with benzoyl peroxide and noticed that it helped with my face papules from FFA. Has anyone else had success with it? I would be curious to find out. I hope you all are well. 

Illustr8tr,

want type of castor oil do you use?  I got Black castor oil from tne health store.  I use it on my brows but got itchy when I tried it in my head.

@MJ I use 100% Organic Castor Oil Cold Pressed by Cammile Q. I bought it on Amazon. I’ve never had a breakout or anything. I’m methodical with it-I use it every night.

Well, I do skip one night a weekend as a treat to limit my nightly routine. I miss going to bed like a normal person...Latisse M W F...castor oil every night...on and on.

illustr8r.....this is good news and I'd like to try it too. Lots of positive stuff online about it. do you apply it just along the hairline in front? How much? Do you apply with fingers, q tip or an applicator? Do you rub it in?

I do castor oil in eyebrows and it helped though they are still thinner than before. I do on my hairline sometimes but mostly do coconut oil in the hair because it feels cooling. Has anyone else had peeling skin?? My forehead has been a mess for the past month. That’s how I got diagnosed initially. Went in for mysterious forehead “sunburn.” It is back and peeling a lot and the flaky perky is up on my hairline too. :((

@Beez I put a drop each on the fingers of my left hand then transfer back some to my right. I massage it then along my hair line on the top and sides. I go back pretty far-even back to my “good” hair and behind my ears. I do this about 3 times so my scalp is covered in oil pretty evenly. Any excess I massage in under my eyes-i think this stuff softens wrinkles too! I’ll wipe the excess across my brows/lashes on the days I’m not using Latisse. I have to sleep on a towel and I use an old pillowcase because it will stain linens over time-but it does come out in the wash.

@Mel I had that peeling scalp thing too-around my hairline and about an inch in from there. Didn’t hurt or burn, just peeled. That’s when I started using castor oil. It cleared up after 1.5 weeks. I notice Clobetasol is drying and sometimes makes my head feel worse even though it’s supposed to ease inflammation. ?!?!

Oh lovely some good news! I have some good Castor oil too - black Jamaican (sounds kind of like I could smoke it too... ; ) ).  

Today I broke down and called Dr. Famous Man, b/c what he prescribed in early March is really not having any effect (though why am I not surprised?) I just wonder if he has any other suggestions. Are you guys on the FB page too? I am reluctant to post there - anonymity issues... 

I am losing more hair as the weeks go by. If it would just stop here, I could deal. But it probably won't. So I love the idea of castor oil.

I am also debating whether to go back to my first doctor who prescribed A LOT of stuff, and wanted to do a biopsy (which makes me nervous). 

I read last night - and maybe you all have seen this too- that topical steroids do not work in 93% of cases (why that weird percentage??) but injections work better. That the drugs for malaria work a bit better, that Accutane works too (a bit). The last option I tried for acne many moons ago, and it made me feel soooo strange that I will not repeat the experience. So YES Castor oil : ). I think I will also begin to glue down the sides... can you recommend glue (again)? I think Minter has some ideas ; )

grosses bises,

@illustr8r Thanks! I am going to try this.... My forehead is red, itchy and peely going on a month now. And the skin is rough and looks ancient. The peeling is going into the hair like you described. But I don’t use Clobetesol or any drugs. Ugh!! Will use more castor oil and see.

Here’s a website that has some good info about castor oil. :)

https://www.goodhealthacademy.com/health-benefits/castor-oil-for-hair/

Thanks illustr8r, fingers crossed, 

Just be careful with the castor oil because I actually ended up allergic to it. My head was super itchy for days afterward. 

Hi all, with all the discomfort & common symptons that many of us have, itching, pain, tenderness, creepy crawly scalp sensations, amongst others, do any of you suffer more sweating than normal especially on forehead where hairline once was & now is/& or scalp and where the eyebrows once were (if, like me, you pretty well have zilch left); I never used to sweat in those areas like to the extent I do now, even when I'm moderately active....it's so frustrating, especially when you live in a climate that it is quite hot & humid for much of the year....???

I would love to meet someone local to have coffee with I feel so alone in this Hell :(

Hi Jules, I read an article on this..just google frontal fibrosing alopecia and increased scalp sweating:is neurogenic inflammation the common link? Harries Wong & farrant.  Another horrid part of the disease..it's relentless, I feel your pain