Frontal fibrosing alopecia,

[Myhair]

I am interested to discuss this condition with fellow sufferers

[Shen54]

Hi.

I have this type of hair loss. I think it started about six years ago although it’s probably longer.

I’m female, aged 65 and have thick hair but not so much on the top of my scalp now or at the hairline where it has receded evenly by about 5cms to a near ‘perfect’ arc.

I see a dermatologist roughly every 4 months and have been taking hydroxychloroquine for the last four years which is supposed to reduce inflammation and slow the loss of hair.

I am still able to use a side parting and so hair rests over the top, although sparse but gives a bit of coverage. I use a hair clip to keep the hair down but also find hair bands can be useful. Also thinking about using a French comb as I feel like a ‘schoolgirl’ using the hair clip. It helps give me a bit of confidence when I’m out and about. I’m rarely without a hat or other headcovering when it’s windy!

I also have alopecia areata which has affected a wide patch at the back of my head and my eyebrows. (My dermatologist said he hadn’t seen a patient with two types of alopecia before.)

I have just made an appointment to have my eyebrows microbladed as I think that when I can no longer use hair accessories I’ll use scarves so I would at least like my eyebrows to be defined.

Wigs; I’ve thought about this but hadn’t realised that they need to be replaced every year or every other year. At least that’s what I have read. I have also thought about looking into a mesh hair treatment but it can wait.

At about the same time that I began to notice hair loss I also started to experience hyperhydrosis centred on my face and head. (I had a bit of an early menopause at 45 but the sweats are like those of menopause, coming and going at odd times whether resting or being active.)

Not sure if this has helped but hopefully you’ll have other responses too.

[Myhair in reply to Shen54]

Hi Shen54

Thank you for responding it does help to hear from others.

I noticed my hair loss sometime during 2019. I eventually went to see a dermatologist beginning of this year who immediately diagnosed FFA. I started on Hydroxychloroquine and Doxycycline. I have had two lots of steroid injections.

A few years back my hair was falling out in alarming handfuls. I did mention this to a doctor when discussing another ailment but he didn't pursue this and I was embarrassed and thought it vain to push it further.

However, I haven't really noticed mass hair loss this time, just a constant shredding, so I am not sure if it is related, or due to other health issues, such as the menopause or an underactive thyroid.

I am very saddened that I have become very conscious about going out on a windy day and I am becoming very reluctant to go to the hairdressers.

I am sorry to hear that the Hydroxychloroquine has not been effective after four years. from what I understand the maximum length of time you can be on this drug is 5 years.

I am 58 and I too went through an early menopause at around 40 years. I did not take HRT. My hair is/was thick and my skin is very fair, easily burns in the sun.

I was diagnosed with an underactive thyroid in 2017.

I am trying to understand this disease and would like to find as much information as possible especially by talking to others to see if there are any common factors such as an early menopause, lack of oestrogen, stress, or the use of hair products or vaccinations etc.

I have noticed my head gets hot and sweaty where my hair was and the skin feels thin.

Many thanks.

[Shen54 in reply to Myhair]

Hi again.

Yes, windy days are a big issue. I have a number of hooded jackets now as well as a few hats.

I should have said that I also have an under active thyroid which happened at the same time as early menopause, for which I took HRT, and chronic fatigue syndrome (M.E.) which lessens greatly after each recurring bout

My dermatologist told me that I can continue to use hydroxychloroquine beyond five years and that there are ways to get around this ‘cut off date’ but as I haven’t got to that point I do not know how this will be.

I am a retired head teacher and stress was certainly a constant factor.

I have tried various hair products to no avail and have resigned myself to continuing hair loss.

I wish you well in your search for information.

[Myhair in reply to Shen54]

Hello again, I can certainly identify with stress, the last few years have been taxing for one reason or another. I am sure this is a contributing factor.

It is early days for me, I am not yet resigned to the loss of my hair and realise I have to find a way of coping.

Thank you for sharing.

[Nadia21 in reply to Myhair]

Hi both. I was diagnosed 2 years ago aged 46 but the red spots were on my scalp for at least a year before, I just dismissed them as sensitive skin. I had some general shedding but that stopped when I got my iron levels up; they had dropped below the level for hair growth. I was tested for under active thyroid before, my dad has it so I assumed that was why I was constantly tired but no, it’s just a busy stressful life apparently!

I take hydroxychloroquine too and for scalp lotions I have had dermovate but moved on to elidel once steroid injections started.

I estimate I have lost about 3cm along the hairline and I think it might be slowing down but it’s hard to say. I have gradually come to terms with what I have lost so far but fear further loss.

Sending you both strength!

[Myhair in reply to Nadia21]

Hello, Nadia

It is fearful the thought of further hair loss and every hair gone is a hair that is never coming back. But being proactive taking every step to prevent this does help, Although managing my stress is a work in progress.

My dermatologist is very nice, she tells me she is seeing a rise in the number of ladies coming to see her with this condition. She also suggested I see a trichologist To get ideas on how to cover my loss of hairline and maybe suggestions on hair styles.

I wish you all the best

Regards

[Shen54 in reply to Myhair]

I have just read an article about FFA and a link to trauma which it said triggers the condition which has been lying dormant up until that stressful event.

I experienced 3 very stressful events, two of which were close family bereavements, about one to three years prior to noticing hair loss which as we know just creeps up on us.

Having previously been told by a dermatologist that there is no known reason why FFA occurs I was surprised to read this.

Could trauma be the catalyst?

[Myhair in reply to Shen54]

Good morning Shen

54

I hope you are well.

I am sorry to hear of your loss and the effect this has had on your wellbeing. I do sympathise, as I have been through and going through similar circumstances.

I understand that FFA is relatively new to the medical world 1994, so little is known about it, little research has been carried out. My dermatologist asked me if there is a history in the family, I know there isn’t, nevertheless, she concurs with you about a recent study which suggests we share a gene which remains dormant until an event which causes our immune system to attack the hair. However, some think there is a link to oral contraception.

She invited me to join in research which I agreed. Unfortunately, this is on hold now due to Covid-19.

I hold out hope that if the cause can be identified then a cure/treatment will follow.

All the very best.

[Shen54 in reply to Myhair]

Hi,

Any research into FFA is so good to hear. I hope your participation in it will not be delayed for too long.

A cure/treatment would be just wonderful.

Best Wishes. 🤞

[Hidden in reply to Myhair]

I've never taken contraceptives so maybe we can rule that out?

[Hidden]

Thanks for starting this thread.

[deejames]

Hi I have ionly just come back to the site as my FFA was controlled by a drug regime ( quite severe I must say). I was taking hydroxychloroquine, mycophenolate and azathioprine all at once. Regular blood tests but despite two of these being immunospressants I was never ill over the course of six years. My hair loss was confined to a 1.5 cm diameter patch.

I got pneumonia 3 months ago and of course had to stop all the medication apart from mycophenolate . Now my hair is shedding in quantities. I have had to go onto scarves whenever I go out within 3 weeks.

As regards wigs my NHS trust gives me a prescription for 4 wigs a year. (Surely this is the case with all health boards. I am in Scotland though). I have just got my first one but have to say I hate it. It feels very insecure, it itches and gives me a headache. Though I suspect the headache is tension due to just hating this whole thing that is happening to me.

Strangely my daughter has the same condition. She started with wigs 2 years ago and has been such a support

Looking forward to hearing from some of you even though the original post was months ago.

Dee

[Myhair in reply to deejames]

Hi

I hope you are fully recovered from pneumonia and that you are on the mend. I am sorry to hear too that this has triggered a change in your condition. It sounds like you have wonderful support from your daughter.

Hopefully you will start to get used to wearing a wig and become more confident. I don’t think many understand how devastating it is to see your hair fall out.

Sharing does help , thank you

[DawnSkye]

Hi All

This is my first post here.

I thought you might like to hear my experiences so far with Frontal Fibrosing Alopecia.

I was diagnosed with FFA in 2015 although I'd started noticing hair loss at my forehead and temples a couple of years before and my eyebrows are virtually non-existent. My GP originally blamed hair loss on my age - I was 50 at the time - but finally referred me to dermatology who diagnosed FFA right away. It was almost a relief to get a diagnosis and know I wasn't going mad! I did feel so vain mentioning it to my GP.

My treatment started with a steroid cream called Dermovate. I then took Hydroxychloroquine for just over a year but had bad side effects, stomach pains and nausea. I would have persevered with anything but my dermatologist advised trying a different treatment. I'm now taking Lymecycline antibiotics and started steroid injections when my scalp became inflamed and itchy. This was a new symptom, up till then it had just been hair loss. The last injection was in February this year. I'm still using the dermovate cream and hopefully go back to dermatology in January.

My hairline has receded about 3 cm all the way round. It's so gradual that it's hard to know if it has stopped. I'd love to think it had. I hate going out on windy days but that's difficult when you live in Scotland!

I've lived with this condition for a while but its still difficult to come to terms with. Thanks to everyone here for sharing their experiences, it definitely helps knowing your not alone.

Best wishes

[Myhair]

Hi, I went to the dermatologist November last year, I had previously mentioned this to my GP, but he didn’t say much and I didn’t pursue this because I thought I was being vain and it was just a part of getting older. Eventually I paid to see a dermatologist who diagnosed FFA immediately. She is now seeing me on the NHS, although my appointments have been cancelled due to COVID. I think steroid injections have helped me. This month I noticed I have started to lose hair again which makes my heart sink, I cannot help feeling down about this and still hope for miracles🤞.

I have recently found lectures on YouTube by a dermatologist called Donovan, it has helped me gain a better understanding of this condition and treatments and how more research is emerging. My dermatologist put me forward to join in research in the UK, but again this is on hold because if COVID.

It’s good to know I’m not alone.

Thank you

[Anniemc2000]

Hello - fellow FFA person here - recently diagnosed. I think mine has been brought on by the trauma of covid. I've not been hugely affected by covid - I am lucky in that regard - just had the kids and husband at home all the time 🆘🤯 but combined with being peri menopausal I think it has contributed to it. I do think it's a very stressful time for us all and over the years I have tended to show stress via a physical reaction (headache/ stomach pain etc).At first I thought my symptoms were due to menopause. I have a receding hairline, lost my eyebrows, most hair on my arms and most of the hair on my legs. I spoke to the GP (no F2F last year) a few times who advised to wait and see and then finally asked for HRT and was refused (😡) but was referred to a dermatologist (only because I have private insurance I think). Meanwhile a friend said her sister had FFA so of course I looked it up - was never mentioned by the GP. Straight away the dermatologist said that was it.

I am now on Hydroxychloroquine and have a lotion for the hair. She said the hair on my head was quite strong and not too inflamed but to me it's not nice - I can see individual hairs which one shouldn't really. She did say she wanted to try and treat it quite strongly to try and get it to slow down/ stop but was honest with me. She was also considerate and said to be kind to yourself - get your hair done/ dyed etc (when we can!) as it will make me feel better about it.

Urrgggh I hate it - my forehead is already high and I am very self conscious about it.

Would be lovely to chat to others with it...take care everyone and let's hope more research is done as I would love to know exactly what causes it or if a treatment can be done to treat it properly.

[Myhair in reply to Anniemc2000]

Hi It is definitely a horrible disease . We do need more research. If you would like to be involved please ask your dermatologist. If and when I get details will let you know. I am in the UK.

[Anniemc2000]

Yes I will do, I am UK too. I am seeing her in a couple of months

[Nadia21]

Hi Annie, sorry to hear you have FFA. I was diagnosed 3 years ago and am on the same treatment and prior to lockdown was getting steroid injections in my scalp every 4 months. I think mine was caused by stress too. If it helps, my hair loss has been very slow and as I have a fringe not too noticeable, although I feel very self conscious when it’s windy. Take care

[R1955]

Hi I am 65 and was diagnosed with FFA about 9 years ago and have lost around 5cms of hair on my forehead and around my ears. I was not really offered any treatment at this time, apart from Hydroxychloroquine, but was told it had many side affect, so I did not pursue this treatment. At the beginning I lost most of my eye brows, and body hair. After researching I found a wonderful lady who I go to every year to have my eyebrows microbladed. I did get a wig as got to the point that I did not want to leave the house if it was windy. However, about a year ago I found a hairdresser that does stick on real hair pieces for women (there are lots of hair dressers that do this for men but not for women?) . The hair piece is fitted to my scalp at the front and sides, it is fitted with surgical glue and is blended into my natural hair. This has turned my life around, I need to go for maintenance around 6-8 weeks, but I have my own management system to do any emergency refitting. I panicked during the lockdown but found that I coped really well as getting more used to it. It was strange at first, but as time has gone by I even forgot it is on my head. I can wash and style my hair as I would normally and go out on the most windy days without worry.

About 18 mouths ago I too experience hyperhidrosis on my face and head, this lasted around 12 mouths and then to my horror found that the hair on the rest of my head started to fall out in patches, so have now been diagnosed with Alopecia Areata. When visiting the Dermatologist he said it could be down to the stress of me having FFA? I have another appointment tomorrow, but looks like the hair has regrown and just keeping my fingers crossed that it stays. I just thought I would post to let you know my story.