Great info on the microblading.  Thank you everyone!!

I had my brows micro bladed about a year ago. I burst into tears when I saw them because I felt like I had my face back. I was so happy! I have nothing further to add to what the ladies have said below-same experience for me too. Do lots of research, study before and after pics and reviews before choosing someone. Get it done- you will feel so much better! Take care. :)

hi halfbakedwho... haven't been back here for a while and just read your update. WOW you have growth on the affected areas after applying the minoxidil and cortisone. I am shocked as the docs say that the scalp is "scarred" and will never grow back. This actually makes me feel good...even though right now i don't think i have any new hairs coming in those areas, but then again i am not using anything on my scalp, which i think i have to reconsider. i was the same ... every minute it was on my mind. could not sleep, eat or think of anything else.. terrible then but better now. thanks for the good news. we'll see if i go ahead with those topicals.... i'm so afraid of the side affects.. but maybe worth it since i am making myself sick with worry anyway, what's worse!

Sad here.  Having a tough summer with tapes slipping on the front of pieces and trying to look "cool!"  Other than that, it is apparent, after visiting my hairdresser today for a shape and color of my real hair, that the area around one ear loss has increased on that side by about one inch.  There is no doubt that even tho the back of head and hair at nape strong, I will definitely need a full wig in the near future, maybe next year.  Bummer. 

Regarding eyebrows, mine are now tatooted and it is great!  Even on days where the pigment doesn't look as strong, just filling in lightly, but having a shape and "brow" to work with makes all the difference in the world.

This is tough....no easy answers.  

I know there is a lot of speculation about SPF, but my doctor (at Northwestern in Chicago, Illinois, USA) doesn't think it's valid. I'm a high risk for skin cancer (Irish, Swedish, and English descent and also had a very rare skin disease when I was younger) so there's no way I'm giving up sunscreen. Both of my parents had squamous cell spots removed. They both died from other forms of cancer, so cancer runs pretty strong in my genes.

I understand this is a disheartening, confidence-killing condition (I was diagnosed when I was 36, but started seeing recession and hair loss around 34) but I think it's irresponsible to suggest people stop using sunscreen. Please use sunscreen! Melanoma is on the rise and is a very deadly form of cancer! 

Thank you Airam for the update!!

I have had several physicians suggest that "stress" makes the disease worse, therefore, I strongly suggest anything including an antidepressant to keep the stress level low.  

Hi folks - I am reading all the comments on this site - such a boost to know other people suffering like me and to read about their struggles too. I have suffered from ffa for going on 5 years now - have tried everything - been to 3 specialists and now going to a fourth. None of them give me any good news really . I refuse to give up even though I now have to wear a frontal hairpiece and did get my eyebrows microbladed - best move ! I keep in touch with all the latest treatment and use Rogaine and clobetasol regularly . I also take hair , skin and nail supplements and vitamin D twice a day. So far hair is still shedding but not as bad so I'm keeping up the routine. Take care everyone and lets pray they find an answer to this horrible disease soon !

The two things they "suspect" are causing FFA I've been doing for many, many years.  Used sunscreen for 30+ years EVERY day on my face and in my cosmetics.......AND.......was on birth control pill for 18 years.  Ugh......

I completely understand the stress component as this started for me after two years of dealing with the deaths of both of my parents. For me antidepressants are not an option. I tried them years ago and had terrible side effects. I seem to be very sensitive to all medications. I have also used sunscreen for years in all the facial products I use but so has everyone else I know and they don't have FFA?  I am going to look for more natural sunscreen products. I think about all of you lovely courageous women who have dealt with this for so many years. It can be all consuming everyday and I hate it. Honestly I could go about my day so much easier if I didn't constantly have these awful scalp tingling sensations. I don't know if it's the heat, or FFA or how I react to the topical steroids? What do you all do to help relieve that?

Hi Ladies.  You all have left a lot of information here.  I was interested in the treatment they prescribed to you at Guy's Airam.  I have never heard of the medication they prescribed and wonder what the counterpart, if there is one, in the USA would be.

I just came off of using plaquenil for about 6 weeks.  My scalp was terribly inflamed.  As bad as it has been in at least seven years.  That is why I went on plaquenil.  It cleared up my scalp to a great degree, but I started having terrible side effects and could not continue using it.

I know use clobetasol solution as needed.  Protopic as needed. Minoxidil 5% has been used since January.  I did not shed hair or see any increase in redness or flaky spots when I started Minoxidil.  I think it helps and I have seen some hair growth.  I also saw a great deal of hair loss while I was on Plaquenil.  

Just last week, I added dutasteride to my plan.  It is the second time I have been on it.  I stopped before because of weight gain.  I find it stop the hair from falling out, so I am trying it again because of the great loss I've had in the past few month.

I have had FFA as a confirmed condition since 2013.  I think I've had it since 2006.  I am nearly half way bald and am losing hair at the nape of the neck now.  I want to hang on to the hair at the back so I can continue to wear toppers.  

I believe that sun screen contributes to this condition.  I wore them daily in my moisturizer and makeup for over 25 years.  Pauliegirl, what is the brand that you are no using that you think is safe?  I find titanium dioxide in everything.  Even vitamins have it in them.

I think stress is a factor in causing our bodies to go into overdrive with inflammation.  I also think the GI track is part of the problem.

Are any of you a part of the Facebook group:  LPP - Put Out The Fire?

5 HTP is a serotonin increases works like Zoloft for those who do not want to take antidepressants - I am currently taking this

For those of you on Dutasteride/Avodart, did you notice you gained weight when taking it?  I have packed on 15 pounds since I started a few months ago and my weight never fluctuated before.  The weight is all in my stomach which I didn't have before.  I called my doctor and she basically said it was all in my head.  There is a woman in my office though that is on Finasteride, and she is experiencing the same thing.  I want to get off this drug, but I'm terrified all my hair will fall out if I do!  I'm also on Rogaine/Minoxidil.

Yes, Christi Q, I also put on 15 lbs.  All in the stomach.  I looked like I was six month pregnant.  Dr. Donovan said that there is a 5 - 7 lb. weight gain in the stomach that some women will experience.  I have gone back on it, but I have promised myself that if I put on more than 3 lbs., this time, I will go off.  I've never been able to lose the 15 lbs.  

Kristen P I totally agree!  My derm also scoffed at the link to sunscreen and FFA. I would rather lose my hair to FFA than to chemo. I won't stop using sunscreen unless there is a broad long running study which proves otherwise.  Then I will be hiding under long hats and shirts so no one will see I have no hair anyway.  

Hello - I was diagnosed with FFA in 2011 - I've been taking anti-malarial tablet every day as an anti-inflammatory and vitamins for the hair, hair loss is very slow, people often comment on my 'bouncy curls' but freaks me out when I read about how one can go 'almost bald' especially as I went and did the most stupid thing earlier this year. It began a couple of years ago when I went to a tattooist and got him to put some fine lines, like hair, around where my 'sideburns' had gone...the result was amazing!!! Looked almost the real deal and I could tuck my hair behind my ears, and my confidence was back again. Then I went to the same bloke this February and just thought as he had done such a great job before, I just wanting him to fill in the few missing bits that had come in the last couple of years - this time the result was hideous!!!! So on top of everything else, am having laser treatment to get rid of this 'thing' he has tattooed, so I have a double whammy to contend with. On the plus side, as said before, still lots of hair, but on the down side, as I said before, when I hear that others are 'almost bald' I think, if I don't get rid of that tattoo, I am going to look doubly weird!!!!          

On tattoo.... my person got it wrong too even though they were highly recommended by a alopecia support group.  Mine went orange. I hated them. I though they looked fake and everyone was looking at them.  To make things worse I am going through lazer tattoo removal which is VERY PAINFUL and expensive. It oxidised my orange eyebrows to black. I am 6 treatments in and they are still there and a dark grey.... When they are gone I am going to try eyebrow wigs or keep drawing them on. It will take me a long time to get over this to even think about tattoos again.... but having said that some love love love them.

I've not posted for awhile but I have been following along with the discussions- Just wanted to add that I went for a consultation last month for microblading and am scheduled to get my eyebrows done in October- I can't wait as I am so over pencilling/powdering/gelling my thinning brows.

 I told her all about my FFA and she mentioned that she is going to a masterclass in tattooing the hairline and will have the class completed before I come in for my appointment-  she does a lot of work with people who have alopecia and have had chemo etc. so I feel confident in her abilities, but after reading some of the posts on how us FFA-ers reacted to tattooing, now not so confident in my body's ability to accept the microblading and I am also a redhead which adds to the probability of fading too, figures- double whammy! :-/

Leni & Nina, she has a ton of before & after photo's and reviews- also the consultation was over an hour long and she was very thorough and professional- she took lots of photos of my face & eyebrows.  She is also booked months in advance so that says a lot about her too, I think!  

Nina, I am sorry you have to go through laser treatment for bad work, that must be very painful.  I will update on the hairline tattooing that she is getting trained on as soon as I hear more about it :-) 

Leni, I was looking at all my eyebrow products the other day, I have so, so many pencils and powders and gels, thinking this will be the one that will make my brows look natural and normal.  

I still have brows, very thin but they are still there- they are also blonde, I was tinting them but stopped as I have been tinting them brown for so long I had forgotten what they looked like being just blonde!  I use pencil, then powder then eyebrow gel, usually wunderbrow or sometimes clear mascara to set it, so they don not end up disappearing. Sometimes they come out looking really good, sometimes one looks good and the other not so good or they both look weird.  

I am also using Revolution hair powder on my sides in front of my ears, it stays on all day and blends in really good to help disguise the hair loss so I can almost not panic if the wind blows my hair back! I blend the dark and the red together and it looks pretty good.

I know almost all of us are going through the same ritual every morning and it sucks that we have to do this.    

A CAUTIONARY tale: I know we all have complex morning rituals with our eyebrows, but I'd like to earnestly recommend an addition to your nighttime ritual. Oh, great!

Like many of you, my brows had been thinning for 3 or 4 years before diagnosis with FFA. Thnning, but still there to some degree from side to side. After FFA research, I began using minoxidil foam [Rogaine for MEN] on my brows, nowhere else, just before bed. It soaks in quickly, and is easily and neatly applied by spraying into the plastic lid and applying with q-tips. Be sure to shake the can well before gently spraying into the inner lip of the lid. Within a couple weeks they were looking so much better!

After a while, I cut back to every other night or so. Seemed OK at the time. Eventually, without realizing they were gradually thinning again, I used the foam only a couple times a week. And then, on vacation without the foam, and too ill when we got home to follow thru, I somehow let more than 2 weeks go by without it. When I finally realized how much gain I had lost, I panicked and went back to at least every other night. But it was TOO LATE! Every night I studied before applying, and it simply wasn't working any more.

Then one morning, before applying makeup, I looked really closely at my brow line and noticed for the first time that there was an entire 'stripe' along the top of each brow that was SCARRED just like the top of my forehead. There were no longer any visible pores, closed tight like the skin where FFA had retreated on my forehead and scalp. That's why the foam was no longer working there.

And then it dawned on me, that's why my eyes had looked so old and tired and sad lately. I'd been applying brow makeup where the few remaining hairs were -- several millimeters below where my former natural brow line had been. No wonder it looked so sad and droopy! So now, I'm having to apply makeup on totally bare skin above the remaining/dwindling set of very pale brow hairs. It is MUCH more difficult to achieve anything even remotely natural looking that way.

For various reasons, I cannot have them microbladed. I am stuck with a situation I could have avoided, and there's nothing sadder than regrets.

So, even if some form of tattoo may be in your future, I urge you to work now to retain what brows you have and even supplement them with minoxidal foam applied EVERY NIGHT. After a few months you might cut back to every other night, but please do not make the mistake of letting any more time than that go by.

For those of you who are fairly new to this struggle, I hope this will be helpful.

Hi All

Can I just ask - is it absolutely inevitable that we are all going to lose our hair. As I think I've already said in a post, I was diagnosed with FFA 7 years ago. The hair loss I've had is around the ears, a little bit behind the ears, and approximately an inch on the forehead. As I had a low hairline to start with, the loss hasn't made too much impact, but when I read more on the subject on this forum, it does make me wonder if I'm lulling myself into a false sense of security. Is there anyone else out there who has only had 'minimal' loss after a period of 7 years or so? It would be good to hear.

Thanks                

Nina - I am four years out and I too have had only the initial loss of left side behind ear and around face about an inch - I had made dramatic diet changes and took vitamins to clear out my liver and kidneys - went off osteoporosis meds - you may be similar in what you have done without realizing that either of us were doing things that may have changed our course with this disease - I urge you to read thepaleomom - great explanations about what goes on in our intestines - compare it to the autoimmune diet - I am not on either of these diets but pretty much eat what they recommend without knowing that that was those diet plans - I also had several shots and had eaten a lot of tomatoes until I read this info on lectins - I also have listened to some of the Dr Gundry info - I am sure that there are other probiotics that would work as well - I had a dog bite about two weeks ago and had to take penicillin and they recommended a probiotic - I am gong to continue to take one.  Please do not think that I am recommending the strictness of these diets or his probiotics but that information combined with the woman that did the intense amount of research on the nerve endings of our scalp makes a lot of sense to me - many of us have known it was a perfect storm but I still believe that we are closer to figuring it out - I also think that many of us are sensitive to zinc and titanium and nano particles - the makeup industry is full of so many chemicals that we have absorbed - who knew - I also am either going to use the dermal hammer or dermal roller as I still believe that some of our hair follicles may just be asleep - can't hurt to try - stay the course and we will figure it out!

Hi Joy - thanks so much for your feedback. I too have a very good diet - rarely eat junk food, lots of veg etc and have taken viviscal for hair ever since I was diagnosed. What is the info on lectins? I love tomatoes - are they bad for us?  And what is a dermal roller? The other tablet I take is hydroxochloroquine (have I spelt that right) an antimalarial tablet that is pretty standard for FFA sufferers which my dermatologist is reluctant to take me off as he thinks it might be one of the reasons why the progress of hair loss is so slow. I will start taking probiotics again, that seems to make sense. I do have an underactive thyroid gland - hence why I have always maintained a good diet because I don't want to put on weight - and this, of course, seems to be something else FFA sufferers seem to have, or a similar autoimmune disease. On a final note, I have a healer. Some people might think that's bonkers, but I go to India every year, and it was when I was out there a few years ago, a friend said 'what have you got to lose' when she suggested this lady, and I thought, yep, I've got nothing to lose, and like you said, if it doesn't hurt, go for it!!! So, every week, I 'WhatsApp' her, and she sends me healing - it gives me comfort and, as I said before, my hair loss is really minimal so far. I will go to any lengths to keep my hair, it was always my crowning glory, and if I feel I am in control, it makes me feel better. Look forward to any other ideas and top tips - thanks so much   

I guess there are lectins in tomatoes - they use lectins as a binding agent in drugs like flu shots, pneumonia shots, etc , which kill off the good enzymes in our digestive tract - bad diets of high sugar and salt then feed the bad enzymes and head us to auto immune land - slowly - add huge stress - makes sense - after going to a naturopath (do not feel bad about the healer) he added fats and more protein back into my diet after a hair analysis - supplements to remove the bad parts of them - but those things are close to paleo thoughts - if you eat healthy no junk - the drmal roller pierces your skin ever so slightly - hammer is a Chinese version for hair growth - you tube as some with alopecia have had some amazing results

Thanks Joy - interesting stuff which I will follow up. Onwards and upwards, hey!!!

Hi! I took a break this month from medication and started a diet based on probiotics too. I was taking orally: hydroxochloroquine + Dutasteride, agreed by my dermatologist in Brazil and a dermatologist from CA. The only diference is that in CA they want to use it for 4 to 6 months and here in Brazil they want me to keep taking. I am also using Rogain for man twice a day. We have seen improvement, but I feel I am still loosing hair slowly but steadily, as for the past 10 years. Now that I have taken a break, I fell different, I am not sure if I am normal, and my whole scalp itches once in while, but I am not sure if this is related. I am thankful that you keep talking, I check our comment wall as much as I can, and I share the information with my doctors. Someone mentioned a group of people with FFA in San Francisco, and I would love to hear from them. Thank you for sharing!

Ana_Brazil.......I am also on Dutasteride for about 6 months now.  Have no idea whether it is working or not, but I DO know that I immediately put on 15 pounds once I started using it (I have a co-worker that the same thing happened to her as well).  I would like to quit taking it and just continue with the Rogaine but I'm afraid all my hair will fall out at once!  Did you notice a problem once you quit taking Dutasteride?  How long have you been off of it?

have any of you tried the elimination diet.  think of alergic reactions to peanuts, seafood, etc. where people break out in hives.  i have had scarring alopecia/mine is lichen planopilaris ande. have lost from my hairline front & sides along with behind my ears.  started the AIP diet and i believe it slowed things down.  all diseases start in the gut.  leaky gut.  please look into this.  avoid gluten, dairy, sugar at first and see how you feel.  it takes time, wont help overnight.  try for atleast 3 weeks.  any itchiness/gnawing at the scalp will get better.   read up on the aip diet.  check out paleomom.com.  that's were i started in 2013.

i agree with nina jones and joy.  i am doing similar things and my diet was always quite clean, but the gluten,dairy,sugar was not eliminated.  i do still have some but very limited and feel that my loss is slowed.  still lose the odd few a day but not crazy.  never took any of the drugs / prescriptions that the dr.gave me.  no way and am doing ok with my diet changes.  all natural, taking biosil drops, probiotics, quercitin/natural antihistamine... look into histamine intolerance also.  want to try the derma roller too..Joy i'm with you.  i think they are just asleep and we have to do the right thing to wake the follicles up. lets keep trying.  cant give up hope..

Hi Christi Q., I have stopped all medication for a little bit over a month. What I notice before I stopped is that I was still loosing hair. That's the reason I decided to stop. I was also not taking as consistent as I should with all my travels, and I wanted to feel myself again. But I was taking 3 things at the same time: hydroxochloroquine + Dutasteride + drospirenone/estradiol (hormonal replacement). Just like you I am afraid to stop, and I will probably go back, but maybe one at a time. I am more conscious about my hair now, but I can't say for certain that I am loosing more after stopping the medication. I know for sure it is still going... I did not gain any weight, I actually lost about 5 kilos (11 pounds) due to a Orto Molecular diet, cutting gluten, lactose + adding prebiotics and probiotics to my diet, focusing on the intestine, and my body can deal with food better.  

I am trying to find out if FFA might be linked to botox injections or other derma fillers in the facial area?   Can any of you tell me if you've had these injections?    Thank you.

No, never had botox or derma fillers but have religiously had facial CASI's over the years - but don't think they would be a problem...unless someone tells me otherwise...

I'm interested in the derma roller and hammer - will check them out on amazon...anything's worth a try... 

I've had botox starting, wow, I just realized 10 years ago!  I also had fillers one time only, again about 10 years ago.  

But I am not steady with the botox- I would have injections maybe once, twice a year, then skip a year or two and I actually just had my first botox treatment in about 3 years this past spring and had forgotten what a difference it makes and loved the results.  I plan to get it done in the winter after my eyebrows are microbladed in October and have settled down.  

I am not going to not get botox even if it is one of the causes of FFA, it is bad enough dealing with my disappearing hair, I don't want to have thinning hair and look droopy and tired on top of it, there is only so much I can deal with and work my smoke & mirrors magic on when I get ready for the day each morning :-(

Ahh Minter a woman after my own heart - I run a business and work as a real estate agent at 69 - have not slowed down a bit - but need to look presentable!!! Youth driven culture that we are.  I had a face lift - actually a jowl lift and neck and upper and lower lids not to look younger but because everyone thought I always looked so tired - I did fillers once after surgery did not like them - have done botox not for several years though - we are still missing something - if we have had work done we could have upset the nerves but the stress issue is real for most of us - then there is the nerve issue of the nerves in our neck that lead to the scalp.  How strange (me thinking out loud) that this is a relatively new occurrence and first showed up in older active women and now younger and younger and some men - some as far back as the nineties - what has changed in the society since that time every where in the world - technology - we spend endless time looking down at phones, computers, writing, slouched watching television.  If the nerve channel is impinged it could be doing enough to cause this - none of the hair people or skin people have had much success in treating.  The diet issues are as well a major change in society - ingredients in our food - but for those of us who had eaten healthy there had to be something else - LPP is persistent once you get it which is probably a nerve issue as well - I am going to do some more research on the neck issue.  I have a slight scoliosis and have always had neck issues - actually have not had to mush trouble lately with my neck so maybe that is why my LPP is 99% gone - my shoulders are always tight which is where Sandra Hrasdzira Atkins who is on the other sight did a huge amount of research around the nerve channel.  I have had no problem using the dermal roller - I keep it in alcohol - have been doing it for about a week - I do it in the morning and use the rogaine at night just on the areas of hair loss - my LPP has not changed so I do not think it is irritating it - I roll and the areas of hair loss get pink but no pain or itch. I think I would have lost my mind by now if it had not been for these two sights - maybe we should read lying flat - LOL

Joy, that is pretty much the reason I first looked into botox, tired of people saying I look tired! When I have botox, I don't hear I look tired every. single. day as without it.  

I too have neck & shoulder issues, arthritis and tendonitis, lots of headaches and pain from it, I wouldn't wish this neck pain/headaches on anyone- it is diabolical at times.   When I do yoga regularly it does help loosen it all up somewhat, but haven't been able to fit yoga in the last few weeks and I am feeling every ache and pain because of it.  

Oh and after reading about these derma rollers here, which I had never heard of before- I just ordered a 0.5 mm roller to give a try on my face and scalp, what have I got to lose except $13.99!  

And totally agree! I would have been so lost dealing with this FFA stuff without this site :-D