Sad in Chicago, I would also like the information about the facility you went to. My hair loss is progressing and don't think I'm pulling it off anymore. Time for me to look into this.  Feel free to PM me as well.

Cubbieblue

I 'came out' at work today. Wore a pretty scarf with a pin on it. I had double takes because people aren't used to seeing me with my head covered but overall I had support and compliments and, yes, some questions (are you ok? Is it for your religion?). I just went with it and told people I have an autoimmune disease that causes permanent hair loss. It is what it is! I feel strangely liberated and not so depressed now that I don't have to keep trying to hide it anymore. Thank you for your support on here. Hugs to my FFA sisters!

CurlyK, thanks for sharing you experience with us.  Good for you.  We all salute you.  I also am going out more and more without my hair or even a wrap or hat.  It is freeing.  I'm not sure I could have the confidence to do this if I were working. I bet your scarf looked wonderful.  Now, you get to choose how you wish to present yourself each day.  That is a good place to be.  

YEAH! Well done you. When I 'came out' I was truly surprised by the matter of fact responses from people - interest, for sure, but in the auto-immune problem, not in the fact that I was seemingly going bald!

Why I was so surprised I am not sure, but at the time it was so enormous a step for me, and my confidence so low, I think the whole thing was utterly out of proportion.

I now quite happily talk about it - but when I choose. And I spread the word about, for example, the emerging research relating to spf. It's not that I believe everyone is at risk, but ....

So good on you. And Bu US, you have only had your diagnosis for a month. Don't expect miracles of yourself! From my experience, and from reading of the experience of many others on this forum, it can take a great deal longer than that to come to terms with what is happening.

But you will get there - that is clear from your posts. Try, try, try to stay positive, and keep on posting. It helps!

x

CurlyK I am so happy for you, when you start telling people about this feels like a great burden that is lifted when it is shared!  

BU US Illinois, I have had my diagnosis more or less about as long as you and it is so hard to accept this sometimes, but I do know this about myself, once I started telling people, it became their problem, not mine, if they had a problem with me losing my hair!

Oh yes and I wore a scarf as a headband to church on sunday, so that is my own small step, hair loss or no, I have always loved the look of scarves but never felt comfortable in them! ;-)

BU, I feel like I have spent the majority of my life being so self concious and worried about what other people think of me.        I think, I hope, that I have finally gotten to the point where I will live my life the way I want to live it and be comfortable in my own skin, but it has taken me a long, long time to get to this point. So if people have a problem with the way I am, or the way I look, after all this time, they are the problem, not me, not anymore, not after wasting half my life on people whose opinions should have meant nothing to me to begin with.  Life is too short and all of those people, the ones who have nothing better to do then judge other people on their looks or whatever, I don't want them in my life, the people who don't give a hoot if I don't have one hair on my head, they are the ones that matter to me now.

Oh and I go for a follow up the week after you, also with questions!

Bu US Illinois. That is fantastic news about the re-growth! Congrats. My derm said they now know re-growth is possible and I'm so glad to hear someone is experiencing it. What treatments are you on?

I would really love to know what meds you are on Bu . I am excited to some good news . Just the hope of some kind of treatment that helps would be great. I am continuing with the hydroxychloroquine as my Dermatologist after 3 months use is thinking it is helping. I myself am not so sure. My head is still itching most days which tells me the disease is still active. Please let me know of any other medication that you have found to help. 

Thanks so much for the info - I will make a note a ask my doctor to prescribe it for me. I wish you continued success with your treatment - such a great boost to our spirits !!

And this combination of drugs, along with an FFA diagnosis, is actually growing back some hair on your hairline, forehead and around your ears?  

I love you comment Mike's Deb!  I've always had thick wavy hair and always thought it was one of my better features, so the idea of loosing it was really hard on me. I've been dealing with this for at least 4 years now, and think I've come to terms with it for the most part. I still hate it, but I can hide it somewhat, and no one has really asked me about it.  My husband and kids aren't bothered by it and I don't try to hide it at home. I try to make myself look my best when I go out but I've tried to have the attitude that if people want to stare at my weird looking hair, there's nothing I can do about it. I have a 16 yr old son who has autism and my other 14 yr old son. I need to take care of their needs and I can't let my hair situation keep me from doing things with them and enjoying my life.  I'm still self concious about my hair sometimes, but try not to dwell on it. Like they say, YOLO!  You only live once!     Also that is great news for those who have found re-growth!

Awesome.....very surprised, but happy for you, as I have been told over and over, no cure for FFA, and I have given up on the medical side of things as I felt too many of those options were not for me.  Keep us posted and good luck!

Ditto from me - I have been told that as the hair follicles are killed off, they cannot regenerate. I don't have scarring, or itching, just hair disappearing (apparently into the ether!), so not sure if it's the same thing even. Who knows?

But - WOW!!  Great news. Am highly delighted for you.

x

BU, I am glad to hear the AWESOME news from your follow up visit!  I will mention your meds to my derm when I go-  I am already taking Vit. D, Fish Oil and Biotin, actually I was/have been taking all of this before I realized I was losing my hair :-/   

Mike's Deb & KarenGinny,  I love both of your posts, you guys are so strong and I do admire you both! 

If your derm says there is hair regrowth, surely there must be - so no la-la land!  I just wonder whether we all have the same condition. Maybe we do, but maybe we don't. When I was diagnosed, I was told it was a newish condition and that many medic have never heard of it, hence my doctor's diagnosis of hair loss being down to age (thanks). So is it a possibility that there are different conditions that are similar? Who the heck knows.

One thing for sure, I am going to raise this now - will post with the outcome.

Just keep on nurturing those lovely baby hairs!!.

That may very well be the case, that there are different variations of this- I mean there are so very many different symptoms that some of us have and some of us don't, it makes sense to me what DeniseC says :-)

No, I don't belong to CARF, maybe I should look into joining though.....

I got my hair cut and colored yesterday for the first time since my diagnosis- I was telling my stylist about FFA, the symptoms and all that is involved. She said she didn't notice any thinning or anything going on with the rest of my scalp, which is good, but she said she had noticed the hair loss in the front the last time I was here.  She also said she has another client who has the same symptoms. 

Actually , now that I know what it is that I have, the first thing I look at when I see women around my age or older is their forearms, if the arm is bare of hair then I look at the hairline.  Not that it makes me feel better to see someone else with "more then likely it is FFA" but seeing other women like me going about their day makes me feel stronger & more confident about this- if any of that made sense :-/

Oh BU, you are a stronger woman then I, because no, no, no way would I not color my hair!  If I lose more hair because of coloring it, then so be it, I don't want to be gray on top of all of this too :-( I also still use sunblock, I try and use only zinc oxide at least on my face/hairline, but sometimes I have to use regular sunblock, but I look at it as, either lose some hair or risk skin cancer- so I will keep using sunblock :-/

Hope everyone in the USA had a nice 3 day weekend!

Had my follow up derm. visit this morning-  she is pleased with my hairline, says it doesn't look as pronounced as before and there is no additional loss since a month ago.  She gave me steroid injections along my hairline and for the first time, at my eyebrows, ouch!  She is reducing the Clobesterol to 2 x's per week and I will start Plaquenil tomorrow at a low dose for the first month to see how I react with it.  

This is because after taking the Minocyline for only one week, I felt like I was losing my mind with the side effects! Dizziness, joint pain, my brain felt scattered all over the place, it was to the point where I was afraid to drive, I felt that bizarre and weird from the medication.  Scary how something that is supposed to help you can make you feel that way.  

Anyway, I am back again in a month for the follow up.  Up until the appointment, I was getting the point where I was just going to give up all the medications and whatever happens with my hair, happens- but when I was sitting there in the office, I was like, oh wait a minute, I am here, I want to do whatever I can to save what hair I have left, give me the injections, pills, whatever you think will work! But at the same time, I don't want to be on long term medications for this, I have read some of the side effects for plaquenil & clobesterol, not very pleased with what may happen, long term.  But I guess for now, it is all I can do to hopefully halt the hair loss. 

Hi Minter, Did your derm recommend an eye exam before starting the Plaquenil? It is recommended at the start of treatment for a baseline and then periodically (6 mos or 1 year). Damage to the retina is a rare side effect that can be prevented with periodic monitoring. Glad to hear you haven't had any more hair loss!

Anne Louise, yes she did, actually I am overdue for an eye exam, so this is just the push I need to make an appointment-

 Thank you BU :-) too early to tell if any or all of this is working or if it is just pure chance, but I am glad that nothing has really changed for the worse in the past month!    I will tell you that I am glad to go down to 2 x's per week with the clobesterol, I hated/will still hate having to put it on my scalp every night :-(  

I also have been doing the following every morning for the past 3-ish weeks, I have been massaging tea tree oil onto my scalp, then I pour rose water in my hands and run it through my hair, and then splash it on my face and arms- then I put tea tree oil on my itchy forearms- I know the tea tree oil helps on my arms, not sure if the rest is helping my scalp/hair, but I don't care as  wow, does it smell fabulous!

CurlyK -- Is your piece human or synthetic?  In my experience, it might be best to go to a wig hairdresser, as the pieces usually do better with them, especially synthetic.  I know your hairdresser knows how you wore your own hair and so feels they can duplicate, but it is not exactly the same as real hair (even if the piece is real hair) when thinning out and shaping.  And remember, it won't grow back so don't let them do it too short!  Better friends and colleagues should ask "what's different, or you look wonderful" than it being too short.  

CurlyK, I've been so touched by what you have written the past few days.  I totally understand what you have said.  You are so right when you said that not having hair is traumatic and then getting hair is also traumatic.  That about sums it up.  We hope for hair that will be just like our own, but of course, it isn't.  That is another whammy that hits us unexpectedly.  It is a gift to have a hairdresser that understand you, knows your "look," and if you trust her that makes it all so much better.  Take care.  It is a roller coaster ride for sure.

So delighted it all is working out for you and you feel better about how the piece looks.  Roller coaster for sure....but the best part is when someone you haven't seen for a long time will say how terrific you look and "I love your hair!"  I die and laugh inside every time.The funniest part is that you think everyone notices every little thing, but I am learning that they forget, and further, are usually so focused on other things that they don't notice at all.  It is just wierd because you  (we) want everything to appear seamless and as it always was.  

CurlyK, I am happy that you have an awesome hair dresser and it sounds like you are getting more accustomed to wearing it.  I am so sorry for what you are going through with your dad & Anne Louise, I am also very sorry for the loss of your own dad, life throws so much at us to deal with and then to have to have this hair thing on top of it all, well it can become a little much sometimes and it is admirable how you are coping with it

So sorry to hear your news, but (as probably most of us would know) it is a real blessing when the end is peaceful - makes a huge difference to your feelings now and in the future.

I know exactly what you mean about the hair - when I had the intralace system 'installed' (!!) I felt as if I had had an animal plonked on top of my head. Very strange indeed. And I too had to find out what suits me best - not the clinic who styled it in the first place, but me. So my hairdresser came (to my home) and thinned it out and shaped it, again like your's - not so heavy.

Next time I have it done (shortly - I was told the actual hair would need to be replaced around 4 months, but it is now going towards 7 months - hooray!) I will know exactly what to ask for.

It certainly took me a while to stop being aware of the new hair, though. I felt as if everyone was watching me - they weren't of course, or if they were, it was wondering why I looked different. I don't think of it now - it is just part of me. The only time recently that it has impinged on my consciousness at all (other than when washing it, etc.) has been when it has been very hot, and then it is not the hair per se, but the tape at the front. I would very much like to tear that off when the temperature soars (yes, England does get very hot, too!) - but stuggle on! It is worth it.

Hope the next few days - and all the ones after that - are okay for you and your stress starts to diminish.

My thoughts are with you.

Denise x

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you.

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you. 

CurlyK,

My condolences to you and your family. Today (11.45am) marks 5 years since my husband died of cancer, so we share a sad day together. I have curly hair also. Very curly (actually 3/4 inch coils).  I always hated my uncontrollable curls but they have come in quite useful since FFA. FFA started in November following his passing.  I usually put some dark eyeshadow over the spots and along the missing hairline then I pull the damp curls forward into position over the bald parts.  I am sure that people who know me well realize that something looks different but they cannot quite figure out what is.

CurlyK I am so sorry for your loss of your Dad. I was taken aback at the depth of my grief. He was 89 and lived a long full life, a peaceful death with all of us present...but I still wish I had another 89 years with him. It's been three months since he passed and now I'm not crying every day, so I guess that's an improvement. I will keep you in my thoughts and prayers.

I wish I could help you Ana_Brazil :-( but I am in New York state

As for me, I am here to complain, AGAIN! I have been taking Plaquenil since Thursday (it is only Monday today) and it is making me feel so nauseous, like very sick to my stomach and all it involves & I am only taking 200mg 1x per day- I have tried taking it at night, in the morning, with food, without food and always feel ill afterwards.  So I am going to stop taking this too, after having to stop minocycline last month because the side effects from that also hit me so badly.  

I don't understand why I am getting every side effect there is lately, it is very frustrating.  I am going to finish off the Clobetasol (no side effects from that, luckily) then I go back to the dermo. next week to figure out my next step, which I think as of now is to stop the medications completely, I will speak with the doctor and see what she says. 

She (the dermo.) prescribed 200mg to be taken 1x per day- as I understood it, it normally is 200mg 2x's per day? Irregardless, even if it was half the dose, it would still mean half of the nausea and stomach upset, which is still half of too much that I would want to deal with every day!  Luckily I didn't get anymore itchiness or shedding, maybe that would have been the next symptoms- ugh, even more reason for me not to take it :-/