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

sallylwess what is clobetasol?  is it an oral steroid?  I wonder if I should ask my derm for an oral steroid....

Jess, clobetasol is a topical cream that contains a steroid.  It is a foam that is put on your scalp and it is supposed to reduce the inflammation which is supposed to help with the burning, itching and discomfort in your scalp.

Any new ladies on here??? I have typed up a fact sheet on FFA to save you the time/effort of reading back over our past posts... please send me a 'friend' request so that we can exchange emails and I can send you the fact sheet as an attachment.

Brilliant idea, Debs, well done ! x

Fact Sheet - yes I would like one please!  Brilliant idea. To give to my local derm as well, also local trichologist and skin/hair clniic. They all say they are seeing more of the condition, and would like more information. I think that the more we make people aware of FFA the better, and the higher the chance of some research being done into why it occurs, and what can be done about it.

Thank you Carol for that info - I wasn't aware of some of that but it is good to know that things are beginning to happen !

Debs - great idea about the fact sheet.  I'd very much like one, please.  Have sent you a friend request.

Debs, I would love your fact sheet too (have sent you a friend request). Thank you so much! I have tried so many different treatments over the last year, and seen many doctors in the States, the UK and France. If useful for you all, I will happily summarize everything I have tried...

Catherine, I for one, would be very interested in the treatments you've tried and length of time you tried each as well as the country you received the prescription from.  I am sure we would all very much appreciate this information, please and thanks.

Hi Rita, Of course, I will be most happy to. I really have tried so many different options and seen numerous doctors, some of which have published a lot on LPP (I have two forms of LPP: FFA as well as the 'classic' LPP elsewhere on my head; my FFA is most obvious and active). It has been such a journey. I am travelling at the moment but will write a detailed account of all the treatments I have tried, length of treatment etc.,  as soon as I am back home in London in a few weeks. It is not a happy ending unfortunately as nothing so far has seemed to work...

Debs, I would also love to see your fact sheet! I think I sent you a friend request...or at least I tried :). I have a call set up with Dr. T on Thursday...so hopefully can be part of the research! Thank you!

Hey All, I'm wondering if anyone knows of a doctor in the Denver area that specializes in FFA.  My sister who lives in Portland was diagnosed 2 years ago.  I think I have FFA as well as my hair is receding.  

has anyone that tried the oral steroid prednisolone felt that it made a difference?

I'm not sure how to reply to Deb directly about the FFA fact sheet you have developed but I would appreciate a copy.  Thanks very much for putting it together, Brooke (brooke@peak.org)

Hi. Tomorrow I have an appointment with Dr T at Guys hospital. He has asked to see me, my mum (who also has FFA) and my son. I'll let you all know how we get on.

Jess I took the oral steroid prednisolone. It's difficult to say if it made any difference because there is no particular pattern to this condition but it did make my skin lovely which led me to believe that it probably minimizes any inflammation in/on the body.

xx

ET, you can get a list of dermatologists in your area via the CARF website. Good luck!

Thanks Pam, I have put the CARF website details on the factsheet, it is really intended to point people to the right places online with website addresses etc.. plus info I have got from ladies on this site and derms I have spoken to.  It is a starting point for new ladies.  CARF is a fantastic resource and their London patient meeting last month was terrific.

debs-007@tiscali.co.uk

Please drop me an email and I will send a factsheet to give you website addresses and an overview on FFA, drug and non-drug options, tattooing, wigs - where to buy, how to wash/cut them etc..

Hi,

I've been reading the comments and I'm behind the curve.  Who is Dr. T?  It might be interesting to get into this study and my sister and I both have FFA.  I'm getting tested but it's pretty obvious.  Also how would I get a copy of the fact sheet.  Thanks for your help.  I don't even know if I'm posting my questions in the right area.

Asking our derms to use all possible treatment options.

Lasers - I believe that the hospital I attend for FFA, Salford Royal, has a laser machine.  On the hospital's webiste it says that one of the derms  Dr Janice Ferguson is doing research using lasers on another condition (scleroderma).  However laser treatment is not offered to FFA patients at this hospital.  Any ladies that are due to see the derms at Salford Royal may like to elect to try laser treament.  I have only just become aware that the hospital has laser equipment.