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.

Hey I am new to this site and posted this yesterday but i don't think anyone saw because it was in the wrong place.  please let me know if anyone has any words of wisdom for me:

Hi everyone,

I was just diagnosed with ffa this past friday.  I am only 32.  My eyebrows are mostly gone.  This started a little over a year ago and I went to different derms and they all said alopecia but was not given the right diagnosis till last week.  The new derm put me on the hydroxychloroquine 200mg twice a day.  does anyone know if this will make my hairloss stop?  does anyone know what i can do to keep the hair i have left?

Welcome Jess, I'm so sorry you have to deal with ffa at such a young age.  You will find a lot of useful information on this site.  I have honestly learned more by reading posts on this site than I have from the three doctors I've seen since my diagnosis in March, 2013.  I've been taking hydroxychloroquine for almost 5 months as well as using a topical steroid on my hairline. This regimen seems to be standard protocol with most doctors when treating ffa.  Hydroxychloroquine helps to reduce inflammation & hairloss in approximately 50%-65% of cases.  It can take several months to know if it's working for you.  I also started using men's 5%  Rogaine foam on my scalp & eyebrows 6 months ago to thicken up my existing hair per my doctor's advice.  I have been able to regrow hair in the areas that haven't scarred over.  Good luck to you.

sallylwess, I have been using Rogaine on my eyebrows for six months and definitely do not look like a werewolf.  My doctor said my eyebrows have not been affected by ffa, but I was never blessed with thick brows and they have gotten sparser over the years.  The Rogaine merely brought back some of the eyebrows that stopped coming in.

Thanks Mandy and Annie.  I have been reading on this site A LOT.  It does help.  I just have so many questions.  My derm did not put me on antibiotics or steroids.  Should I ask to try these meds out?  How do antibiotics help FFA?  Do steroids and the Hydroxychloroquine do the same thing ? 

Hi all, I'm still on the fence re Rogaine as the men's 5% which is what my derm suggested, has posted on its box, Not for use for women.  I know the womens is a weaker strength and that's why the derm said to use the mens.  Is everyone who is using Rogaine, using the 5%?

Thanks Terry, I'm really wanting to try it, worried that those shedding weeks prior to seeing any sparse growth will be most embarrassing.  I always think on what's coming up and of course, the Christmas season, then a trip and never seems a good time to 'hide out while losing hair'.  Never a good time to lose more of our precious hair I guess.

What about using the Rogaine only on bald spots.  Will there still be shedding? What happens to women (beside shedding and possible hair growth) who use the Rogaine for men?

Hi Jess, I am so sorry to hear about your diagnosis.  This is the place for you because you will get a lot of great support.  I, like the others, have read through everything I could on this site and learned more than I could ever have learned from a doctor.  I actually printed out part of this discussion and gave it to my derm who thanked me profusely.  She also asked for the name of the site so she could give the information to another patient of hers who had just been diagnosed. I'm sorry you are having to deal with this at such a young age.

I saw four dermatologists, three internal medicine doctors, and one endocrinologist before anyone diagnosed my FFA.  Mostly, I was dismissed.  Finally, a derm biopsied my scalp, and came up with the diagnosis.  I was given clobetasol.  I have not used it much because I try to stay away from steroids.  I have now started going to a dermatologist who actually missed what this was in the beginning, but is now very interested in doing what she can.  I hope to start the Rogaine in the next week or so.  I am also doing a lot of reading on the diet in regard to inflammation.  I will start the TQI (Http://TQIDIET.COM ) after the first of the year.  I figure I might as well not set myself up for failure by starting a new diet just before the holidays.  I hope this is helpful to some of you.  You have all been so helpful to me.  

Good morning all.  I have just had my chat with Dr T.  He is most interested to learn that there seems to be an increasing number of pre-menopausal women who are joining our forum.  He is very keen to be contacted by FFA sufferers, as those of you who have spoken with him are aware. 

The e mail address is                    christos.tziotzios@kcl.ac.uk

At Guy's Hospital research clinic they are applying for a 3-4 year grant to research into this condition.  I wonder if the ladies who have recently joined us would be happy to contact Dr T (I asked him for the pronunciation of his name and we agreed that Dr Christos is easier !!)  I wonder also if those of you not UK resident would contact him too.  I sent a one page synopsis of my condition :-

Age

Onset of symptoms

Opinion as to the trigger for this

Medication

Family history etc

Thanks yet again to Debs for doing the groundwork at the CARF meeting recently.  XX

I have also contacted Dr. Christos. We are going to set a time as soon as I return from my Thanksgiving holiday away. Celia - that is a great idea about the one page synopsis! I will definitely do that. Thank you all so much for all of the support and for all of the information. It makes me feel not so alone...even though I would never wish this condition on anyone.

Maddy - having written the one page and e mailed it to Dr T - he still asked me qs that had been covered in the e mail.  I suspect he works from a checklist that he completes.  It's great that he is also gathering info from non-UK residents.  There is so much info on this forum that must surely be very useful to anyone researching this condition.  Have a lovely holiday and put FFA out of your mind as much as you can ! x

Hello Celia,  I have just sent an email to Dr. Christos providing him with all of the information about my condition as you suggested.  I will let  you know how he responds.  It is reassuring to know that I am not alone and that there are people out there who do care about sufferers of FFA!  Kind regards, Pauli

I'm also speaking with Dr Christos on Monday.  Well done Celia for starting up the forum, it's meant that Dr Christos can tap into a ready-made supply of willing participants in his research.  I'll let you know how I get on.

Best wishes

Jean

Thank you Debs for the info about Dr Christos and the saliva test - isn't it great that he will be happy to collect data from ladies across the pond too.  I know that there have been 114 people on this forum and that a number have stopped posting over recent months.  Perhaps if some of you are still reading from time to time you may pick up the information that Debs got from the CARF meeting in London and contact Dr Christos yourselves - I am sure the more data he can gather for his research, the better the chances of making progress in the search for reasons for FFA and a cure.  Fingers crossed ! X

I sent all of my information to Dr. Christos today.  I will do anything I can to help him find a cause and a cure for FFA.  I'm glad he wants data from "across the pond"!

Hi, I emailed Dr. Christos today.  Also, CARF in the US has a November Newsletter.  I am attaching it to this email.  Hope you can open and see it. 

CARF_Newsletter15_Nov2013.pdf

Good information - but I don't think there is anything we haven't heard or know.

Best regards to all.

Hello Ladies, 2 days ago I sent an email to everyone i this group giving the email address of Dr Christos Tziotzios as this forum is a bit of a pain in the way posts disappear so quickly... can anyone please confirm did the email to the group actually work ?  Also can you all ask your derms to pass on his email address to other patients with FFA so he can have as much DNA to work with as possible.  XXX

Hi Debs - yes it did come through ! I have also repeated the e mail address on here a couple of times too.  He didn't mention the saliva test to me but I have e mailed him my address.  I think probably people go straight to this part of the forum.  Hope your messages are opened.

christos.tziotzios@kcl.ac.uk

Pam W I was interested to read the newsletter - thanks to you and Debs. xx

Debs, I did not get the email from you.  I have spoken to Dr. T.  I will be getting a saliva collection kit soon from him.  

Debs - the link you sent had a  letter u in the e mail address you gave for Dr T - that is why it bounced back when it was used by some.

christos.tziotzios@kcl.ac.uk      Just in case anyone hasn't e mailed him yet - this is the address.   It's a difficult surname to write I almost had to do it letter by letter - I asked him the pronunciation - I still couldn't say it !

Thanks Debs for finding him - have you done the test yet ? x

I also had an interesting chat with Dr T this afternoon and will be joining his research group.  He said that there was some conflicting research, in that one study involved using mice, who grew hair on man-made minor skin damage.  The second came from sufferers who had hair transplants following FFA.  The procedure caused a flare-up of the condition.  Dr T asked lots of questions around thyroid and HRT issues and feels that a lack of estrogen could possibly be a trigger but it's very early days and he doesn't want to make any assumptions. 

I'll wait for my saliva test.  Great that something's being done!

Best wishes - Jean