Meme - I am so sorry !  That's very thoughtful of you to consider us.  I do hope you feel better soon.  Will let you know how our day goes.  Hope to see you early in the New Year ! x

UK ladies - just a reminder about the online survey to help with directing research.  Several of you have let me know that you've completed it already.  Thank you so much!  If you haven't yet, please do take a look.  It's worth having a bit of a think about what questions you'd like research to answer before you do, to save time.  Many topics have cropped up on this forum - there should be no shortage of ideas!  Then, it should only take about 10 mins, depending on how much you have to say, of course.

http://www.alopeciaonline.org.uk/hairloss_PSP.asp

Please do grab this chance to have a say!

xx

Hey ladies - I've just had a look at the survey responses so far and FFA has a pretty good representation.  Well done!  Let's get some more and get ourselves noticed! xx

Pam, please go see your doctor [not necessarily your derm] !  That kind of itching, including palms of hands sounds like a bad allergic reaction.  I've been there too often, and it's not a happy place.  Something you are taking/doing is not right for your system.  I hope you find relief soon.  Don't try to ignore the symptoms -- you may end up needing adrenaline injections to help flush it out of your system.  Best wishes!!

Hi All, I just wanted to update you on my 6-month appointment with my derm last Friday.  After taking plaquenil for 15 months, my doctor said he is very pleased with my progress.  My ffa has not burned out, but it has stabilized.  He could not see any evidence that it has spread since my last visit.  I still have some scaling in a couple stubborn spots, but very little redness.  I am to remain on the plaquenil / topical steroid program and see him again in 6 months unless I experience a flareup.

MJ, I can see a light flaking on the areas affected by ffa, almost like dry skin.  I've also noticed it on my arms around the hair follicles.

 I  mistakenly posted my questions on my discussion forum, but I think this is a better place isn't it?

I still have so many questions, since I got my diagnosis not very long ago, I am happy to have found this forum

 For instance does anybody know if it is hereditary? Are there cases known where both mother and daughter(s) have FFA? Or is it also possible that you can loose eyelashes too?

Hello Sas - welcome to this site. It seems that in many cases the eyebrows are the first areas to disappear, SOLUTION - TATTOOS . Eyelashes can go too, or at least severely thin. SOLUTION  you can have the eyelids tattoed - I just use a pencil. Self esteem also is affected - SOLUTION - support from friends and this site. Hairloss at the front and above the ears - SOLUTION - there are bespoke hairpieces that can be made - fantastic ! Have you read the info sheet that Debs created on this site ? Have you got a good dermatologist ? Where do you live ? Best wishes X

Hello again SAS - silly me - I should have read more about you before writing my last post !

Haha, hello C, no problem and yes I am very grateful for alm the good advices here. Ik have yet  not seen the sheet you mention from Debs, but I am going to look it up!

hello C, I cannot find this info sheet from Debs, where do I have to look?

Sas - if you look above on this page on the discussion forum you will see View All at the bottom - click onto this and go to page 4 - you will see the sheet compiled by Debs there.

Hi Sas. I have had FFA for at least the past 3 years and my mum has it too for the past 6-7 years. She is 74, I am 43 x

UK SURVEY

Hi UK ladies, please remember to fill out the hairloss survey if you haven't already.  It closes on Friday.

http://www.alopeciaonline.org.uk/hairloss_PSP.asp

Thanks for your support! x

Hi Liz, So you and your mother both have it, just as Rebecca. I had hoped it wasn't hereditary, but maybe it is then?

and thanks C, found  the page, the fact sheet is not there but I will ask Debs for it

Hi Sas. I have often wondered if it hereditary and it may well be. However we also spend many years living in the same house being exposed to the same toxins in our make up, cleaning products etc. We both used make up from the same company whose ingredients have since been banned. We both used home perms....So it could be hereditary but maybe not x

Hello All

In the last couple of weeks I've been diagnosed with FFA, however I've probably had this condition for the last 3 years, for example my eyebrow hair fell out first followed by a red sore patch appearing on my forehead which spread down the side of my hair line, resulting in my hair receding around the front and sides.  The specialist I saw injected my scalp with steroids and I’m to re-visit him again in January.  I wasn’t expecting the diagnosis I got, as you can imagine I was thinking I’ll go along to see the specialist, he’ll tell me I’ve got a skin condition give me some cream and my hair will be back in a few months, when he didn’t I was shocked and upset and didn’t really ask the questions I wanted to, all I could remember from the consultation was the words “It’s a rare condition and your hair will not grow back and the aim is now to slow or prevent any further hair loss”.  I’m 47 and not yet showing any signs of the menopause and except for low Iron which is currently being restored with Ferrous Sulphate tablets all other blood test results came out fine, therefore I am at a loss as to how I’ve developed this condition.  I don’t have a perfect diet but I don’t eat junk food either.  Is it really true that FFA sufferers will never get back the hair they have lost?  I’m open to any advice that will inject some hope to get me started on how to tackle this condition.  Thank you for reading and your advice in advance.

Hello all.  I have just returned from Charing X hosp where I saw Dr Ali,(Consultant Dermatologist) a very pleasant young lady who has expertise in alopecia.  She took 3 new biopsies one from the front, the crown and the back, the aim being to see what if any differenced there is in any alopecia activity - I go back in 2 weeks time for the results and then she will start me on a more 'tailored' regime. I had some blood taken too for the full screening inc. hormone levels - never been offered that before. I don't like meds but she has convinced me that she will try to make a plan that may just halt the FFA - she has had patients for whom the FFA has become inactive after some 18 months of treatment.  She had not seen such an effect as I have following steroid injections - as I've said in the past I have a 'trench' at my hairline because of these shots - never again - but I know there are ladies who have felt these to be successful.  Fingers are crossed once again, not having been seen by a derm for a year.  Charing Cross hosp was amazingly clean and the staff were soooo efficient - all ran like clockwork, my apt was about 15 mins late but I had a 50 min consultation. 

Dr Iaisha Ali is the derm's full name and she leads the clinical team.  So very approachable and knowledgeable.

Thank you so much C for the update. Dr. Ali sounds great! Did you need a referral from your GP to see her? Did you call the Charing Cross hospital dermatology department to make an appointment?

Thanks again! Catherine x

Really interesting to hear about your consultation with Dr Ali, it sounds very promising. I would be very interested to hear about the treatment plan she proposes too. 

Thanks very much, Anne Louise for uploading this Carf document, very usefull for new members like myself!

Hi

I had a phone call regarding the CARF meeting in London next week. Apparently there has been very few people singing up to go along. I am unable to due to work. Is anyone else going? Can anyone else go? xx

Hello all

I am new to this site but not to FFA, which I have had for about 6 years.  Of course it was misdiagnosed until two years ago.  I have been through the mill with various treatments, but thankfully now I am being treated now by Dr Aisha Ali at Hammersmith and Charing Cross Hospitals.  I would be happy to talk with anyone about my condition and treatment etc but the main reason I'm writing today is to encourage anyone who possibly can to come to the CARF meeting in London this Friday.  I have just been on the phone with Dr Christos Tziotzios who will be one of the presenters.  Many of you know he is one of the foremost researchers now looking for a possible genetic cause for FFA.  He said last year there were about 80 participants but the conference was held on a Saturday whereas this year's is on a Friday.  So please do come if you can.  I would love to meet some of you there!

Hi Donelle,

I will be there! I look forward to meeting you.

Catherine 

Donelle - unfortunately I live in Atlanta, Georgia.  So, getting to the CARF meeting is not possible.  However, given that you have had FFA long-term, I am sure a bunch of us would love to hear your thoughts on the treatments you've tried.  Has anything proven helpful for you?  Thanks!

Hello all and thanks for the welcome.  For everyone interested in my journey I offer the following (which my husband calls an epistle).  For the past 7 years or so I have been seeing Professor Chu, head of the dermatology practice at Hammersmith Hospital.  I was referred to him by my local (Dorset) dermatologist who was treating me for rosacea.  That dermatologist prescribed massive doses of roaccutane (doses so high that my pharmacist thought the script was in error).  It was almost immediately after that I lost my eyebrows. Prof Chu said I had alopecia areata caused by the roaccutane.  He gave me a series of steroid injections in my brow area which did nothing (except hurt like crazy).  When it became clear that that wasn't working he referred me to the clinic at Ealing Hospital.  At this point I only had eyebrow loss, or at least I didn't notice other hair loss. At Ealing they treated my eyebrows with Diphenylcyclopropenone (DPCP), which is a process whereby they paint the brow area with this stuff that results in allergic contact dermatitis. In alopecia areata, it is believed to work by redirecting the autoimmune attacks on the hair follicles, allowing for re-growth.  All it did for me was replace my eyebrows with scabs until they healed, at which point it was time to administer the treatment again.  I did this for over a year before I decided I had enough.  After I stopped the DCHP treatment I noticed that my hair was receding. Prof Chu's registrar or research assistant, Dr Thivi Maruthappu, immediately recognised that my hair loss was not areata but FFA. Thanks to Thivi Prof Chu referred me to Dr Ali who did a biopsy in which confirmed FFA.  

Dr Ali has me on a combination of hydroxychloroquine, Etrivex shampoo (Clobestasol) and rogaine 5mg twice daily. Her approach is to slow the progression of the disease until it burns itself out. Unfortunately, in my case while this treatment may have slowed things down the disease has continued its relentless course.  I have been given literature on cyclosporine and will see Dr Ali again the first week in December to discuss this and other options. She did say that at some point the disease will go into remission and that once there is no inflammation present a hair transplant will be an option.  I have little hope for this, however, as I have never read of anyone whose FFA has burned itself out nor have I read of anyone who has had a transplant.  Sas, you are the first, and I do hope your treatment is successful (although I am unclear whether this is a stem cell or hair transplant you are having). Also, Sas regarding minoxidil, I urge you to have a look at the CARF website, especially their newsletters, in which the specialists treating this disease all prescribe minoxidil.  In my experience it does produce baby hairs, but for these I am VERY thankful.  I have lost hair mostly at the sides, about an inch (possibly more) and the hair on my forehead is just beginning to thin out.  My scalp itches and burns, and is red and inflamed in places.  My hairstyle mostly hides my hair loss and I draw my brows on each morning with Stila brow pens.  I have lost all hair on my arms and legs and my eyelashes are very thin and spiky.

Forgive me for this has been very long and I really have no good treatment news to report.  I can say that I am very much looking forward to meeting Catherine and anyone else able to make it to the conference on Friday.  This site is amazing and for all your stories I am very grateful.

Jodie - I wonder which derm you are seeing ? Glad your symptoms have subsided.