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Frontal Fibrosing Alopecia ??

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DebDavies View Drop Down
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Joined: 07/July/2015
Location: Devon
Points: 5
Post Options Post Options   Quote DebDavies Quote  Post ReplyReply Direct Link To This Post Topic: Frontal Fibrosing Alopecia ??
    Posted: 17/July/2015 at 3:28pm
I don't know if this will post to the right place.... I hope so. 

have very recently been diagnosed by my GP with Frontal Fibrosing Alopecia (GP is almost certain it is this). He thought 7 months ago it was Alopecia Areata. But because the hair loss is all above my ears by almost a couple of inches and going backward from the forehead, he determines it is FFA. Although there are a couple of patches of hairloss at the back of my head which baffle him. 

I have asked for biopsies to be taken to determine if hair follicles are irreparably damaged as with FFA, but he is about as much use as a chocolate fireguard. This whole hair loss process has been quite upsetting and I have only just begun to show and tell people. But I need to know what I am up against and would love to hear from people in similar situations.
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SarahB16 View Drop Down
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Joined: 29/March/2015
Location: Newcastle
Points: 15
Post Options Post Options   Quote SarahB16 Quote  Post ReplyReply Direct Link To This Post Posted: 28/July/2015 at 9:54pm
Hi Debs,

I was diagnosed with FFA in January following a visit to a dermatologist. I have quite significant hair loss around my hairline and eyebrows have thinned out a bit, can still manage to disguise a lot of the hair loss so not yet gone down the route of a hairpiece. See my consultant every 3 months, no sign of further hair loss on my last visit and agreed to try steroid injections. Have good days and bad days, days when I can cope better. Still fairly new to all this really. Have joined a local support group which I find really helpful.
Let me know if you have any questions although may not be able to answer them!!
Take care, Sarah
Xx
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tzanet View Drop Down
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Joined: 08/August/2015
Location: Dorset
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Post Options Post Options   Quote tzanet Quote  Post ReplyReply Direct Link To This Post Posted: 08/August/2015 at 11:22am
Hi I hope this is the right place to post . I have just had the diagnosis of FFA and I could really do with some support. I have had some frontal hairloss for about 9 years and kept seeking for an explanation     
I have autoimmune problems and was told it was cutananous lupus . But Ive had a really bad reoccurring virus all this year and my hair has receeded a lot I have enough hair to disguise it.Finally I found a tricologist and she spent 3 hrs with me going through my medical history and noted my prescription She diagnosed FFA with looking at the scalp with a microscope connected to the computor .My hair is healthy from the crown back there is inflamation around the frontal hairs. She has given me a diet plan and supplements to try to heal my gut as she says this is where the autoimmune problems stem from.She hopes the loss will stop if the inflamation goes. My Gp is doing a test to check if for oestrogen dominance as she thinks this could be one of the problems . She was v thorough and better than the dermatologist i saw 2 years ago . But she didnt give me ant psycological support and I have been feeling really devastated crying lots and unable to take my mind of it . I am still unwell from the virus which keeps flaring and has made me v depressed . I was just to feel stronger before this diagnosis . I would really appreciate an thoughts on how to cope . This comes on top of coping with my fathers end stage cancer . I am lucky to have a really supportive husband and good friends but I feel overwhelmed at the moment .
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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Points: 82
Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 30/August/2015 at 8:58pm
Hi Tzanet, so sorry to hear that you're having to cope with FFA, and other illnesses, while your Father has end stage cancer.  I was in a similar position last year when I was diagnosed with FFA, only it was my brother who was terminally ill.  It's so good to hear that you have a supportive husband and friends...this is exactly what got me through the early stages of my diagnosis.  That, together with a great hairdresser who had styled my hair in such a way that my hair loss cannot be detected (unless I want it to be!).  Don't be afraid to call on the support of your family and friends.  Also, check to see if you have a local support group and there is always the guys on here to call on.
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Goldie View Drop Down
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Joined: 17/August/2015
Location: Scotland
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Post Options Post Options   Quote Goldie Quote  Post ReplyReply Direct Link To This Post Posted: 01/September/2015 at 12:04pm
I have recently been diagnosed with FFA and Pseudopelade de Broq (also known as footprints in the snow). The consultant I saw has never seen both of these hair loss conditions at the same time.

I am wondering if your secondary hair loss is the same as Pseudopelade de Broq which was named after the French doctor who recognised it in the early 1900s. ( Pseudopelade is the French fior Alopecia.

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Dyners View Drop Down
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Joined: 20/September/2015
Location: Co. Antrim
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Post Options Post Options   Quote Dyners Quote  Post ReplyReply Direct Link To This Post Posted: 22/September/2015 at 7:59am
I've just be told I have FFA and advised to try Hydroxychlorophine. I'm a bit concerned about the side effects especially for eyesight. What treatments has anyone found that helped? My mother in law also appears to have it but has never been properly diagnosed. I was also told it's normally post menopausal but I've no symptoms of menopause yet. Wondering how much worse it will get. I'm able to disguise it from most people so far.
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CHRISSY View Drop Down
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Joined: 19/October/2015
Location: LINCOLN
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Post Options Post Options   Quote CHRISSY Quote  Post ReplyReply Direct Link To This Post Posted: 23/October/2015 at 11:55am
Hello everyone, I noticed about a year ago that my hair was getting thinner and my hair line was receding. I had lost my eyebrows about 5 years before, also most of my body hair disappeared too. I finally asked to see a dermatologist in February this year and he told me I have FFA, he also said I have Graham little syndrome. He gave me steroid lotion for 6 weeks but it's done nothing and the problem is getting worse, on Monday I'm seeing a tricologist but I know that it's probably a waste of time and money. I am 57 post menapausal and am finding the whole thing very depressing. The dermatologist finished the consultation by giving me the name of a local wig maker as he said it is highly likely I will need one in the foreseeable future. It's good to read other people experiences and to know I am not alone, I feel for all of you it's awful. I always thought my hair was one of best features, fine but lots of it, not anymore.
I'll post more after I see the tricologist on Monday. Bye for now x
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Dyners View Drop Down
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Joined: 20/September/2015
Location: Co. Antrim
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Post Options Post Options   Quote Dyners Quote  Post ReplyReply Direct Link To This Post Posted: 02/November/2015 at 7:42pm
Hi Chrissy! I hope your appointment was more encouraging that you expected. Hopefully the more cases they see the better it'll be understood. X
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JJ View Drop Down
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Joined: 11/November/2015
Location: UK
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Post Options Post Options   Quote JJ Quote  Post ReplyReply Direct Link To This Post Posted: 11/November/2015 at 2:56pm
I have just been diagnosed with FFA. My dermatologist says that although they are not ready to publish yet as not all trials are in, but the evidence is pointing to use of sun-screens and moisturisers! It is a recent condition which was originally diagnosed in Australia soon after sun-screens came into wide-spread use. I shall now only use mine below my eyes.

Although Queen Elizabeth 1 had a receding hairline this may have been due to the lead in her heavy make-up.
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Paw View Drop Down
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Joined: 15/June/2017
Location: Lancs
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Post Options Post Options   Quote Paw Quote  Post ReplyReply Direct Link To This Post Posted: 16/July/2017 at 9:28am
Hi Sarah, wondering how things were for you two years since this post. I was diagnosed with FFA in April. I have seen a dermatologist and asked to use Regaine and now Clarelux steroid. Feeling at a loss for getting advice about what works or possibilities for self support in addition. Have you any ideas to share? X
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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Points: 82
Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 22/July/2017 at 9:04pm
Paw...it's been three years since my FFA diagnosis.  I've been using Regaine 5% for three years and taking Hydroxychloroquine and applying Betnovate Scalp Application.  I also received sterioid injections into my scalp for a year (undertaken at Dermotology Dept. at local hospital).  My hairline hasn't receeded any further for over two years now (now only scheduled for a yearly check up at the hospital).  Not sure what might have been the situation if I hadn't had a good Consultant (who specialised in hair loss).  She joined six months after I first noticed my hair loss.  I went to see a Tricologist privately as I couldn't wait the six weeks for a hospital appointment.  He diagnosed FFA immediately (although he did say a biopsy would be required).  He wrote a letter to my GP asking him to prescribe Hydroxychloroquine and recommended I purchase Regaine5%  (not available on prescription).  So I was taking these for a good couple of months before my first hospital appointment which was with a Dermatologist who just "poo-pooed" the fact I was using Regaine.  Fortunately, I was 'saved' by the arrival of Tee (a Malaysian Dermatologist who had spent three years with the world's leaving hairloss expert in Canada).  She instigated the steroid injections and insisted I keep with the Regaine.  You know with FFA that the hair will never grow back but the Regaine is used just behind the hairline to encourage growth, strengthen the remaining hair and also thicken the remaining hair.  It has definitely done this.  I am able to hide my hair loss with a short bob and fringe thanks to the amount of hair I have remaining (and the skills of a great hairdresser).  You have to have your eyes checked annually if you use Hydroxychloroquine.  I have now been prescribed a mild sterioid gel to use about my eyebrows as I do suffer a little bit from 'itching'.  I use Regaine 5% twice a day, take one Hydroxycloroquine table a day and just use the Betnovate Scalp Application about once a week.
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