Frontal Fibrosing Alopecia

[WhatTheFFA]

This is all very new to me .. I never ever heard of FFA ever ever ever.

I started experiencing loss of bodily hair including my eyebrows diminishing over 15 years ... I appear to have entered the peri-menopause about 13 yrs ago and had my first child - geriatric mum - and am now experiencing the menopause! 2 years ago, I started showing signs of rheumatoid arthritis, developed a reaction to alcohol, my skin started burning and crawling and I started to notice my hair line was changing - thinning, receding, scaling .. and scarring. I have been falling apart!! I had an NHS MySkinDoctor assessment by photograph submission - suspected FFA with treatments recommended .. no positive results. Waited for the referral appointment with a NHS Consultant ... nothing!! I got impatient and went private only to have it firmly confirmed - it's FFA, scarring, permanent, will not hair will not grow back - it will get worse! I felt like I hit the floor! She wrote to my Doc recommending referral to a particular specialist (with a wonderful head of hair) ... and that a basal cell carcinoma should be removed .. I did that privately .. my Dr thought it was nothing to worry about ... whoahhh nahh offff with it.

I had my hair cut shorter (lucky I always have had a fringe but I can't wear it up anymore, don't want to be seen when its windy weather, stopped a lot of my sports and exercising ... I have shrunk into a shelf; spend ages treating my skin and making sure my hair sits properly before I go out through the door.

Finally after 2 years I have seen the NHS Consultant .. by chance ..a cancellation! I jumped at it. I sat there bruised and stitched up from the carcinoma removal .. looking like a rabbit in the headlights. As well as levothyroxine and HRT patches, I am now on different medication, another steroid cream and a trial drug for 6 months in an attempt to create a fire wall. If I was told to put a cow pat of dung on my head now - I would!

There is no explanation as to why I have this .. it could be hormonal, stress-related, thyroid related (?) an immune system disorder where my body is attacking itself .. but its on the rise and I don't want it.

I am due to a photographic scan of my hairline to monitor it! God I miss my widows peak and yes I have seen some of the images on line ..

I don't feel I am me anymore .. I crumbled in a heap and cried. I have lost some of my spark and confidence .. I am afraid of what will come next but there is nothing else I can do ... or can I? I can't speak about it. I don't want to speak about it! There are no help groups in my area .. I just have to paint a face on and hide behind a smart suit and attempt to smile .. Sorry for this long post but its hard to accept this condition ... I don't know if anyone else has experienced any of this issues along with a FFA diagnosis and is undergoing treatment and can share their experience and how they have coped?

I'm so sorry to hear this OP. Hair loss is particularly difficult to deal with! Our hair is part of our identity. No I don't have FFA but I do have autoimmune hypothyroidism, so hair loss (particularly at the front!) is something I do have.

I've already planned using a thick hair band across the front (I have a fringe and shoulder length hair) to cover the thinning patch if it keeps getting worse!

Can you find any groups online for people with FFA? It can be a big help to talk things over.

Do not join any groups- the photos are ruddy awful .i was convinced this was going to be me BUT i attend a private dermatologist who thinks i am nuts to think there is zero hope or i will end up with no frontal hair. She thinks they were mismanaged.
I find people on groups their negativity is catching as well.i just dont want to hear it. Some people as well are the same ones posting all the time
I find MN sensible on threads about this auto immune disease

I feel nice still
Feel good in niceclothes still.
Use benefit brow palette to fill in my patchy brows - look good.
Derm told me to go immediatly on perfectil max 3 for 2 which im on 18 months and has helped thickness.
No hair systems for me if loss progresses- they damage existing hair i feel.
Im going to go with wigs if i need to before it gets noticeable. Wigs CaN look great.
Im happy
I did cry lotsbut no more but do feel this diagnosis isint terminal or cancer but itsmy curveball BUT wont let it ruin my life !!! Its not going to either .
Hugs to you OP

Hi Op, I have this condition. My diagnosis goes back years now. It started when I was in my mid thirties and I'm fifty now. I went for a private consultation to a dermatologist when I copped on to what is was (following a chat with GP) and went on plaquenil for two years and a topical steroid cream.

It was difficult. My sympathies to you. You don't hear about this type often when alopecia is mentioned. I have no idea why I got it. My GP thought it's because my mother has rheumatoid arthritis, another auto-immune condition.

I lost two inches from my hairline which is indented and has the typical moth eaten appearance. Sometimes I get red raised bumps and it can be sore and itchy. Hair loss seems to have stopped but the fear never leaves me. I usually wear a soft hairband and cover it up. I lost my eyebrows completely. I got them microbladed. That was a lifesaver. I go and get them done twice a year. Not cheap but I really have no brows. They used to be dark and thick.

The online photos of this condition are awful. It isn't necessarily as bad as that. I'd encourage you to get treatment as soon as possible to stop it in its tracks. There is a group on Facebook but I don't look at it often as I don't want to dwell on it too much. I just get on with it.

Take care. Mind yourself.

Apologies for hijacking your thread- this seems to be the only post on FFA on Mumsnet so I was hoping to get some advice. I would appreciate your advice to know I should pursue a diagnosis or is it just yet another peri/menopause thing and to step away from Google.
In the last year maybe, I’ve had a gradual realisation that the following things have happened.
My hairline (forehead) has receded, maybe only a cm - smooth, shiny skin in its place. No new hairs. The edge of the remaining hair is sometimes hot and itchy. You can see red pores and thinning hair.
I have almost no facial hair/ vellus hair - a little on my upper lip but none anywhere else. My eyebrows have a bald patch in the centre of each. My arms and hands have no hair now, none on my feet or thighs but some on the front of my lower legs. I’ve a large bare patch in my pubic hair. Still have underarm hair but no hair on the rest of my upper body.
I am 54, it’s been about 5 months since my last period. And I’ve had a few years of peri-menopause stuff before this.
Do you think this might be FFA? Last time I was at the doctor - maybe 6 months ago, I mentioned eyebrows, had blood tests as have brother with thyroid issue but said all was normal. Thanks for reading - very long!

Sounds like you are going through the same situation I am dealing with. Get an apt with your doctor pronto and a referral to a specialist dermatologist who deals with FFA. You probably are perimenopausal and may have thyroid issues. It took 18 months to get a ‘suspected’ FFA and medication and a further 6 months to get to see a specialist. I couldn’t wait n went private and forced the issue to get to see the nhs consultant. It’s not known if it’s hereditary, related to the menopause, thyroid, the Covid vaccinations but it is an autoimmune issue. For now on trial drugs. In the meantime, take photos of your hairline. I use rosemary oil to calm the itch down (drives me mad) and an antihistamine. Worst thing is if it’s FFA it’s permanent and it’s about managing it, creating a firewall to slow it down. It’s mentally tiring so trying to cope the best I can. Someone here said to take perfectil - hair and nails. I am on that. I also use a shampoo with minoxidil. I’d try anything!

Thanks so much for replying, I will make an appointment this week. I am afraid I’ll be fobbed off so trying to make sure I am informed before I go to make the case! I hope the trial drugs do something for you.

Im on perfectil max and i notice a difference in hair thickness

I am on minoxidil oral and an inhibitor. I use a cream called Elidel to massage into the hairline. FFA kills the sebaceous gland and follicle which scars over so ithe hair doesn’t grow back. So anything to strengthen the rest of my hair .. that’s a yes!

Hi, I’m just back from the doctor and she agrees that it is likely to be FFA. Had a bit of a cry driving home. She’s referred me to dermatologist (public) and said basically private are only seeing skin cancer patients at the moment (I’m in Ireland). She said they might triage me so I’d be seen sooner (which would be good but also worrying that I might be a priority, if you know what I mean😳). She said she’d start with what she could prescribe while I wait. I know it could be so much worse but fuck.

I'm from Ireland as well but living in England and ended up going private for the face-to-face diagnosis. Then things started moving. What part of Ireland are you .. north or south? I know of a few private ones I could suggest.

In the meantime, if you are prescribed a steriod cream ... use it sparingly!! If you get that crawly itchy burny sensation, take an antihistamine and use rosemary oil on your frontal hairline. I was so distressed and cried when I was told straight up - FFA, won't grow back, it about controlling it. Accepting it as a condition is hard and being self conscious knowing its your hair disappearing ... My mum gave me an old treatment for hair conditions . I think it helps calm it down but my god, I stink to high heaven and don't light a match near me or puff .. I'll go on fire!

Don't know if you said or checked but as its autoimmune related, get your thyroid checked and markers for Rheumatoid Arthritis, Lupus ... also menopause and they are not sure if the Covid jabs have anything to do with it. I am sure there are a few other things but I cant remember. I am just taking these trial tablets til the next appointment in June and putting up with the side effects for now!

At least you made the first move and got an appointment. Take photos for your own records... it was a surprise how my hair line changed.

Thanks for replying. I’m in the south-east and would appreciate suggestions of private dermatologists, thanks. Yeah she prescribed Dermovate which seems to a strong steroid. I had blood tests in June for thyroid as I had noticed the eyebrows thinning/balding and they came back ‘perfect’, I don’t think I have symptoms of lupus or RA but will check them out. Definitely peri/menopausal though - 5 months without period at the moment… I’m 54.

i was told I was borderline with one reading normal and one high for 20 yrs! Docs don’t seem to want to say you have an under active thyroid as the meds are for life and you are eligible for a med cert! Ask for the actual results for T4 and TSH!

Will get some names for you .. might be cheaper up north and a day shopping!

Snowy get on the phone to a private derm and basically cry down the phone
I go to eleanor higgins in the institute of derm in Ballsbridge. But i was prepared to fly to london to see Dr christos Tziatos ( that might not be quite the right spelling ) a leader in research on this.
In fairness the price of seeing him wasnt too bad / same as Dublin but Dublin came up within a few weeks rather than months
Its terrible taking all these meds and you arent really sure whether they are even working. I have stopped tying my hair up and just try and get on with it and try look in the mirror. Earrings are my thing now. Hugs to you Snowy

Thanks folks, appreciate the suggestions and pointers. A lot to take in. Yeah, the lack of certainty around treatment is scary - take all these things and sure maybe it might help a bit or maybe not or maybe make it worse etc. Frustrating.

The GP on This Morning, was discussing a new drug, now available, for autoimmune hair loss. She seemed very positive about it. Strong emphasis on it being for autoimmune alopecia, bur she only spoke about alopecia areata, not FFP. I might ask to be referred to dermatology again, to see if they will prescribe it for FFP - they discharged me, when I declined antimalarial drugs.

Ritlecitinib

It looks as though they are prescribing Ritlecitinib for alopecia areata because the follicles are dormant in this condition, not destroyed, as with FFP.
So every chance of hair re growth for the AAS.

I wonder if there might be a chance of combining Ritlecitinib with a hair transplant for FFP sufferers?
Like the rest of you I expect, I was told that having hair transplants wouldn't help as the new follicles would also be trashed in time. 😞
Perhaps this might be a solution🤞

Yes, obviously with FFA, we can't regrow hair in already affected areas. However, she said the drug stops the immune system from attacking the follicles - so I wondered if it might slow/halt FFA.

I’ve come to the conclusion that every question about FFA is answered with ‘it depends’ 😭

I’m sure you’ve all come across this guy before - he seems to be quick to discuss any alopecia news and break it down into plain English. https://donovanmedical.com/hair-blog/baricitinib-aa-approval

I’m feeling very all over the place the last few days. I’ve an appointment with a private dermatologist who has published a bit on FFA but not until June! No news on public dermo appointment. My GP is saying that she’ll prescribe anti-inflammatory antibiotics next visit. I’m using the Dermovate and it has helped with the itch/burning.

I have looked up the London specialist mentioned above and could get an appointment sooner - but would cost a lot with the travel costs and consultants fee.

So now I’m wondering if the itching has stopped, and I have the antibiotics, is that enough to keep things somewhat at bay until June?

A friend is going through chemo at the moment, and beginning to lose her hair. I feel guilty for being upset about this “cosmetic” thing. (Obviously I am not saying anything to her) So many mixed feelings.

https://scarringalopecia.org/treatment-of-lichen-planopilaris-with-baricitinib-a-retrospective-study/

This studied 12 patients - 5 had FFA - 3 responded, 2 didn’t.

I just caught up on the posts. I am in denial mode .. just starting the 3rd month of Durtasteride which is trail drug (normally given to men with prostrate issues) and minoxidil. I took a bad reaction to the combo after 3 wks and had to stop for 2 wks. The loss continues .. slower but its still continues to look moth eaten. I am now taking Perfectil. Cod Liver Oil and an old remedy for an irritated scalp . . paraffin oil. . yes the stuff for lamps .. It calms the burning itchiness down but stinks! All I see it that it is slowing down . .I have looked up the new wonder drug but its for Areata . . so I haven't asked about it. I am now looking at some complementary measures - what I put in my mouth, my lifestyle and mindset. I have to complete the 6 months of the trail drug first and see what the situation is. In the meantime, I have been offered counselling to help with my confidence and how to deal with this awful condition.

I miss the old me
Im jealous/ envious of other peoples hair. How mad is that.
But like i was very nearly depressed with fatigue/ hair/work/ i also have osteo arthritis to add into the mix BUT i have a lovely Hb, children. Like its not cancer ( what a barometer to have)
No one notices it as far as i can tell YET then there is wigs TG
. there is a lovely woman in town who is nearly bald. Never wore any wig or anything and saw her a few weeks ago with the most fab wig looking amazing. She has no eye brows and i think she had FFA . Everyone in our small town knows she has no hair but like she braved a wig and looks honestly brilliant. Well done her she doesnt care and in actual fact no one else does either. I cant let this destroy my life or my work life or my family life by my obsession with every hair on my head. Its a big deak but not a big deal to my family thats what i have to renember hugs to you all

@Radyward - it’s putting it in perspective too - I agree. That’s the process I am going through because it’s not mentally healthy. I am trying to refocus. And I hear more and more women who have FFA. Xx

Just dropping in to say I finally got to see a dermatologist, they want to do a biopsy as apparently I fall into the 1 in 3 patients that need one. Also wants a full blood panel done. So nothing concrete so far but suspects FFA. The burning/itch/red band of inflammation has been calmed by the topical steroid. so it will be will be another 6-7 weeks before diagnosis.

I am also trying to keep things in perspective and concentrate on other things.

Hello everyone. Sympathy to fellow hair loss sufferers! I was diagnosed with andorgenetic alopecia several years ago. Told to get my ferritin up (it was around 11 at the time) and dismissed. I have never been certain this was the right diagnosis as I have read that this type of alopecia shouldn[t hurt - mine burns and itches all the time and I have red bumps. I have completely failed to get my ferritin up despite years of supplements and have now been diagnosed with hypothyroidism. I have two queries which maybe someone knows the answer to - can this get better when the thyroid problems are treated? Also has anyone anyone experience with oral minoxodil - have been told by a doctor unofficially that this works better than foams or creams but it doesnt seem easy to get hold of.