Hi Sally. I agree with you about health vs hair. We are all in a very difficult situation. If we choose the medication route, or not, we can never be sure if we are doing the right thing either way. As this condition is not life threatening I have choosen not to take any medication. If in the future I am offered a medication that has proven results I may chose to take it then. I would like to share a couple of photos with you. One taken 3 months ago and one taken yesterday. Both are of the same side of my head.

You can see my original hairline by the whispy bits at the bottom of the picture.

I definitely have more hair growth down towards my old hairline.

My hairloss has slowed down ans some has even grown. It shows the unpredictability of this condition with and in this case without medication.

xx

Thank you, Liz for sending these photos.  How exciting to see the new hair growth!  I would be thrilled.  What are you using?  

Hi Liz,

Thank you for posting these pics. My hairline looks like your old hairline except I have lost mostly on the sides and above the ears. I hope and pray that I get back some of the lost hair. I am not on any meds since the steroid injection has caused the largest loss of all of my sheds.

Jen.

Wow, Liz, that's unbelievable!  I'm so excited for you. 

Carol, my eyelashes have also gotten longer & thicker since I started using Rogaine 6 months ago.  I use the generic 5% foam version every morning on my entire scalp & on my eyebrows.  I 'm able to pick up a 4-month supply at Sam's Club in the US for $32.95.  I don't know if the foam version is available online due to the aerosol can it's packaged in.

Thanks Carol, yes the Rogaine on the Amazon site, haven't checked Walmart as yet, is the best price yet.  Now to decide whether to use it. Yikes, didn't realize such side effects.  I am on a blood pressure medication so will need to consider that too.  Did you personally have shedding on start up and if so, how long did it last?

I'm not using any medication. When I was first diagnosed in September 2012 I was prescribed prednisolone and Doxycycline. I took prednisolone for 6 weeks (which was the whole amount I had been prescribed) and the Doxycycline for about 3 weeks (I stopped due to re currant thrush and concern how it might affect my health long term). I tried Rogaine in April which was prescribed by my derm bit I had to stop using it after a few days because it made my eyes burn and I had a permanent headache whilst using it.

For me, the best way forward is to try to limit the stress in my life. Easier said than done!I have changed recently changed one of the jobs I had which had caused me a lot of stress and I am making more of an effort to sort the things out in my life that are causing me stress rather than just letting them fester under the surface. I continually tell myself that doing my best is good enough rather than feeling that my best is not good enough. I am also trying to listen to my body more. I know that I feel bloated if I drink milk and eat bread so rather than accepting that I feel bloated I have cut down on these foods. I have some way to go with that but small steps.

I'm also one of those people who appears laid back to other people but I tend to worry a lot about things that haven't actually happened. I'm trying to work on stopping myself doing that!

I'm feeling lucky at the moment. My youngest  struggled at school. Quite often he would skip lessons and he hated going in. In September he started college and he loves it. He was choosen to represent is college at the skills show at Birmingham NEC. This has made me feel so happy and I know that I'm feeling less worried for him and so maybe that is what is helping my stress levels.

The one other thing I am doing which I think may be helping is to massage my head several times a day. If I am sat down watching tv I gently massage all around the front and temples. It was when I was doing this that after a few weeks I felt bristly bits of hair around my temples. It might work, it might not. But it does help me to de stress.

xx

www.ukdermarollers.co.uk

I have ordered my microneedle roller from this site.  I have the 0.5mm needles.  There was a study on males with alopecia that used needles of 1.5mm needles, another study in Australia used 0.75mm needles, however manufacturers advise less length for females.  The 0.5mm needle length if recommended for use on ladies scalps on this website and seems to be a length that females use when needling their faces to apply anti-aging creams.  Needling is not done every day.  2/3 times a week because the skin must have time to heal and for collegen to be produced.  So I will be only using topical treatments 2/3 times a week.  I can of course just needle and not use any topicals because the action of slight injury to the skin on its own is effective.  I have already experienced this from having my tattoing on eyebrows/eyelash enhancements.  This is just another tool for us all and a tool that we can use without drugs if we want to avoid any more medications.  I have bought a numbing cream just in case it hurts!!!

Hi. Can I ask you all if any of you suffer from Keratosis pilaris.? It's a condition where the skin on the back of your arms and tops of legs looks a bit like chicken skin and where the skin feels rough, like sandpaper. Please use google images for pictures. Both me and my mum had it throughout our childhood and young adulthood. I have read that it is caused by an over production of Keratin and it can affect the follicles of the eyebrow hairs. It would be interesting to know if any of you have it as I wonder if it is somehow related to this condition.

Liz,  I've also had little pink bumps on the backs of my arms since I was a teenager.  I've never been concerned enough about it to consult a doctor.  The funny thing is that after reading your post I felt the back of my arms only to find that they are now completely smooth. 

Debs, I have a question for you if you don't mind.  Please forgive me if I'm asking something you've already answered.  Should the Dermaroller be used on the bare spots and where the ffa is active?  I'm concerned that this might cause a flareup. 

I have a phone call set up with Dr. Tziotizios this coming Thursday afternoon (a bit harder to coordinate with me being in the US).  I just wanted to say thank you to Debs again for getting all of this information to us! I am looking forward to it. I have never had Keratosis Polaris, nor has anyone in my family that I know of. 

Also, Annie, I have been wondering that same thing about those rollers. It makes sense to stimulate the scalp, but, then again, I think my hair loss started up again after my biopsy, so I don't know. It is so hard to tell with this stuff!

Thanks debs for gathering all that information. I've contacted Dr Tziotzios and will be giving a sample. Its not going to help me but I felt better today knowing that some research is starting and that people may benefit in the future. I'm confused about what the rollers are for. Never heard of this before. Take care

I've also contacted Dr. Tziotzios and will speak to him on Thursday.  I agree with Dee that it's nice to be able to do something to help research into FFA to benefit people in the future.

Liz - it's great that you've had some regrowth - long may it continue and I think you could be right about stress.  

Stress certainly could have been a factor for me (my hair loss began at the time when I was helping care for my mother who had dementia).   I'm not on any medication now except for Dermovate which I use only when I get a flare up.  The dermatologist I was seeing earlier this year told me that the hydroxychloroquine hadn't worked for me and the only other medications available carried the risk of side effects - which I don't want. ( I suspect she felt my age was a factor too).  Anyway I'm going to do the stress reducing bit like you, Liz, get on with my life, hope the FFA burns itself out and be glad it is nothing worse!  At least I've got my nice hair-pieces which have really boosted my morale.

All of you ladies who are trying the treatments - I'm rooting for you!.  It's only a matter of time before the doctors find a cure so hang in there.

I had a long talk with Dr T yesterday, and am going to be taking part in his research. I am so delighted that more research is being done into this awful condition.

It is great that Liz has experienced some hair regrowth, it really does give us some hope! I feel full of drugs at the moment, and don`t know where or when it will end!

I`d love to know more about your hairpieces Kath, as I got one yesterday but when I wore it home my husband said it was appallling, and you could see the contrast between my own hair and the top piece so clearly it was obviously fake, and it looked too top heavy as well! At least he is honest, which is a good thing!! Do your pieces clip in, or are they taped on? Are they synthetic or real hair? I know it would give me more confidence if I could find a good one that just covers my front and sides, and feels lighter to wear than a full wig.

Hi Jules. I have not had a biopsy. I lost a lot of hair very quickly, within 1 year I had lost several inches. My mum has had this condition for about 7 years and has lost about 4 inches. She has never used any medication. I have male pattern thinning of my hair as well and I think at some point my shedding took place very quickly ( I cant remember the name for this). I think that the hair that has grown back is maybe the hair that shed quickly, maybe? 

xx

Rita, I'm sorry I haven't  replied to your questions regarding Rogaine sooner.  I have been using a generic 5% foam version for over six months now - morning & night for the first 6 weeks, then every morning since then per my doctor's instructions.  I wash my hair every other day.  I put the foam on my wet scalp on the mornings I wash my hair, then style as usual.  It actually gives my hair a little lift at the roots, and my hair looks as clean & shiny as usual.  It does make my hair a little duller on the second day.  I've found that if I spritz my hair with a little leave-in conditioner on those days & use my blow dryer with a brush designed to increase shine (Name brand:  Ion - purchased at Sally's Beauty Supply in the US) for a minute or so, it brings back some of the shine.  As far as shedding when you start using Rogaine, yes, I did experience some.  This is supposed to be a good sign that it's working by stimulating the hair follicles to push out dormant hairs.  I noticed about twice my normal shed about two weeks after I started using Rogaine.  This continued for about two weeks and slowly tapered off and went back to my normal ffa shed by week six.  The initial shedding was scary, but I really didn't notice that my hair was thinner after my Rogaine shed.  I started sprouting new hairs in less than two weeks, and I can still see little tiny new hairs coming in.  Good luck to you if you decide to use the Rogaine. 

MICRONEEDLE ROLLERS.. it is known that when there is slight injury to the skin it encourages hair growth, so often people that have eyebrows tattoed (regardless of whether they are doing it for fashion and don't have alopecia or if they are alopecians) more hair grows in that area.  So, by using this tool we are trying to trigger this effect.  It also encourages more collegen production so it is anti-aging!!  Angelina Jolie does it on her face.  You can use it on bald areas with the hope that something might grow back there is no harm in doing that and use it on areas where there is still hair to encourage more hair to grow and preserve what we still have.  this tool just encourages hair growth.  So use it on bald areas and areas of hair.  I use mine on my face for anti-aging and my scalp for hair loss.  Use 2/3 times are week so skin has chance to repair itself.  You use your anti-aging creams on face after needling to boost effectivness.  You use your regaine or dermovate after needling to boost effectiveness.  OR you can just needle without any lotions/creams and it still works.  This is a tool we can use on its own or in conjunction with other treatments.  It is not a new treatment, Chinese medicine has used this effect for 1000s of years.

I have a low pain threshold but I can handle using this tool.  I was very pleased with the effect when I used it for the first time on tuesday, my skin went all pink and the blood flow increased in that area for a few hours afterwards.  I could also see/feel that my face cream was working much better when I applied it.  You can needle any part of your body but not eyelids.  

Ladies, this is a great tool to use for our faces... it has the added bonus it may also help to preserve our hair and encourage some regrowth. 

I looked at some reviews of needle rollers on the Internet, and there are also some warnings. Some people have suffered from damaged skin which has left permanent marking. Maybe it was incorrect use - but its as well to be aware of the possibility!

Re wigs. This is to let you all know my recent positive experience. I've just visited Wills Wigs, near Birmingham, and been fitted with a fabulous Ellen Wille wig in "Flame mix" that closely matches my own hair colour (which is coloured red) I had a NHS voucher so only had to pay £65 towards the cost. I knew as soon as I put it on it was right for me;  the change in my appearance was amazing. I had been feeling really depressed, hiding away at home, and only going out with a hat on as I felt old and unattractive with my hairline receeded and my hair so thin on top. My skin is very good but because of my hair issues I felt older than my age.  Anyway, I thought I have to pluck up the courage to wear this wig in public so go for it girl!  I was to attend a study day at work, so wearing  my own clothes for a change - normally I wear "scrubs" for work which makes me look like a sack of potatoes and no make up because it is too hot  - I put all my make up on and the wig. Felt VERY nervous but I needn't have worried - the response was fantastic. Everyone said I looked amazing! One person I hadn't seen for a few months didn't even recognise me and then she asked me where I got my hair done! Wow! I ducked out of answering but it felt so good! I'll be changing my photo soon to reflect new me.

Annie, Thanks a bunch for your Rogaine routine info.  I was at Costco-U.S. yesterday and saw the Rogaine 4 mths $49. and the no name 6 mths for $48.  I probably would stick with the Rogaine brand if I decide to try it.  I assume you had no side effects then, correct?

Rita,  I had a tender, itchy scalp for about the first 3 weeks after I started using Rogaine.  My hairdresser said this was normal as your body gets adjusted.  I have a very sensitive scalp, but it wasn't anything too bothersome.  I also find that I'm a little furrier in places I don't use Rogaine, like my neck & around next to my face.  The good news is that my eyelashes have gotten thicker & longer.  Hopefully it draws attention from my thinning hairline.

Caro UK, I'm glad your new wig is such a success.  Thanks for sharing with us.  I'm a very private person, and my hope is that if/when the time comes for me to transition into a wig everyone will think it's my own hair, only better.   

Caroline I am so pleased you are sorted now with new hair that feels like the old you... your colleagues clearly agree and think you look great.  Now you have new hair this can take some of the pressure of you when you are out and about. 

Caro - I'm delighted you're so pleased with your Ellen Wille wig.  I have an Ellen Wille hair piece in 'Dark Sand' which matches my hair really well and I've had lots of compliments.  Enjoy your new look!

.

Thanks Annie, Kath and Debs. It's recently become impossible to disguise my hair loss by hair styling as I had been able to do. I am on medication but of course, as for all of us, have no way of knowing if it has slowed down the progress of this disease. All I can do is hope!  I'm taking Planquenil 200mgs daily and using Dermovate scalp lotion. 

Debs, thank you for attending the CARF meting and for posting all the info on the forum. I've been in touch with Dr Tziotizios to sign up for his DNA research and he's phoning me on Monday. Also will check out the needle rollers -  I've noticed that since I had my eyebrows tattooed I have had some regrowth of my eyebrow hair which has to be good!

Mandy, I'm sorry you've had no benefit from Dermovate lotion. I've been using Dermovate on alternate days for about 10 months but have had no adverse reaction - on the contrary it has helped the inflammation of my scalp. Wondering what others using it have experienced? It is a very strong steroid and I was worried about using it but my derm reassured me that it was the best course of action to reduce the follicular inflammation.

Mandy, your story sounds like mine.  I had very little pain until after I started using topical steroids.  I'm currently on my third one.   I don't know if the ffa is causing the pain or the steroids.  The redness & inflammation is much better, but my scalp is so tender that I can barely stand to style it or go outside on a windy day.   I'm hesitant to stop using my anything on my scalp because I had a flareup when I took a break from topicals for a month.  I've also been taking Plaquenil for almost five months. 

Caro I am so pleased to hear your story about finding a good wig! I am at a similar stage to you, and need to hear some success stories!

I have also had a lot of trouble with topical meds causing scalp soreness. I'm getting ready to try another one and hope I can tolerate it. I don't understand how something that is supposed to help inflammation can make it seem much worse.

Thanks Pam. I'm feeling better about myself now.

Dr Tziotzios is phoning me on Monday. Wondering what questions he willl ask? I'd like to be prepared in advance of his call. Can anyone help with this? Thanks!

Caro - I spoke with Dr Tziotzios yesterday and he was very nice.  He  asked when the FFA had started and what progress it had taken.  He asked what I'd noticed first etc.  He also asked about my general health and if any other members of my family had had any alopecia or immune system disorders.  He wanted to know if I'd had a definite diagnosis of FFA and I told him the name of the consultant dermatologist I'd seen.  His questions were all very straight forward really.  .

I found it useful to have a note of dates when the hair loss had started and so on but I certainly didn't find anything he asked was difficult to answer.  He ended up telling me a bit about the research.

Hope that's useful. 

Caro- I spoke to Dr Tziotzios last week, and he asked questions about the history of my FFA and what treatment I had received. I had a sheet with me of key hospital appts and what I had been prescribed, so it made it easier to answer.

He asked about general health, family members with similar conditon.

He also asked ME what I thought the causes could be! I said that I had always wondered whether it could be hormone related, as it seemed to primarily affect women of a certain age, and we were also some of the first generation who had taken the Pill and gone on HRT.

He then asked me what oral contraceptives and HRT I had taken over my life -  when I had started taking them - what brands - I found that harder to remember!

Mandy ! How do you know what pond water tastes like ! ?? Sorry you've had a testing time - I check my hair every morning when I pull the blinds up - crazy !

There has been a lot of uplifting news lately from some of our group - I would feel so lonely in this situation without you all, so - a heartfelt thankyou to everybody.

I will contact Dr T next week.  Mandy - do you live near Birmingham - I can't remember, but Caro I believe sees Dr Rajpar too.  Enjoy your spirulina (without algae hopefully) and I hope it works, sounds positive so far.  Don't give up hope, Mandy - we all have down times with this beast of a disease.  Enjoy your Sunday X

Thanks Kath and Pam for your feedback about questions Dr Tziotzios might ask. It was really helpful.  He called me this am, we had a long chat. Discussed my medical history and that of my close family. I don't have any siblings, but he was interested to learn that I and my mother have Vitiligo which is another autoimmune condition. I've been accepted onto the program and just like to say a HUGE thank you to Debs for going to the CARF meeting and finding out about this new research.

Regarding topical steroids & a sore scalp:  I am extremely tender right now, but it seems like the redness has subsided and I'm not seeing hairs fall every time I scratch an itchy spot. I guess I'll continue using the topical, but it does make me miserable.  My doctor keeps saying that he doesn't understand why topical steroids should have such an effect on me.   I have a hair appointment after work today.  My hairdresser always looks over my head for changes, so I'll ask her if she can tell any difference since my last visit 6 weeks ago.  What would we do without our hairdressers?

Hi All, I also spoke with Dr. Tziozios today.  I am so appreciative of this site because I was able to learn about the study that is going on for FFA through all of you.  I hope that Dr. T is able to learn much from what he is gathering from all of us that will be helpful in finding a cause for and a cure for this disease.  It might not help us, but perhaps it will help others in the future.

Pam, that is excellent news.  I'm going to try using Rogaine.  My dermatologist suggest that I try it. I will stay away from the derm rollers.  I asked my dermatologist about using Rogaine on my eyebrows.  She said, "No.  You will look like a werewolf."  LOL

Dr Christos Tziotzios is a researcher with Guy's and Thomas' Hospital in the Saint John's Institute of Dermatology in London.  He is doing research on FFA.  He did accept me into his study because my condition has been confirmed by a biopsy.