Frontal fibrosing alopecia

[Fluffychops21]

Hi,
Anyone else on here with this condition?
Have you had any treatment that’s worked?
Looking forward to hearing from you 🤞

Hi OP, sorry to hear you are a fellow sufferer. I posted the same as you a few weeks ago, and got only one reply. It is quite an unusual diagnosis due being misdiagnosed by GP's. My GP's including an ex dermatologist, said it was female pattern baldness, male patterned baldness, and the effect of being vegetarian. One said the facial papules were just aging skin. I was a young looking 46, and at nearly 53 still wrinkle free. I had list the hairs on my arms and those very fine/invisable hairs from my face too. I only got diagnosed because I was sent to dermatologist with prickling/itchy skin. He recognised it straight away. I have 2 inches of my fringe. New people tend not to notice - I've been lucky in having a low hair line to begin with. Loss seemed rapid at first - I thought I would need a wig by now-so in some ways I feel grateful. I was discharged from dermatology when I refused antimalarial tablets. No treatment at present. I less conscious now than when it first started - I take my 10 year old swimming for instance. I came on here hoping to hear from people with burnout. I really hope you find an effective treatment. I'm furious I started eating meat again - particularly as I had been vegetarian for 25 years, with a head of long, thick shiney hair!

I had a very stressful episode in 2017. I then started losing my hair. Then went to dermatologist who put me on protopic which didnt work/ then was put on proscar tablets and steroid injections which halted the loss. I then had to come off the proscar as had pv bleeding. Now my head is tingly so went 2 weeks ago to GP who diagnosed frontal alopecia
To say im devastated is an understatement . My god the pictures online are shocking. Is this whats ahead? An urgent referral has been sent in as im in the active phase of hair loss
I keep breaking down im so so upset
Reckon it started 4 yrs ago. Im 47.how are ye all getting on / coping ? I mean there s worse things to be diagnosed but this is horrendous

Hello! I've had this for a good couple of years now, I've been on hydroxychloroquine but had to reduce from 400mg to 200mg as they were giving me low blood sugar. It did arrest the spread for a while, along with topical regaine but that was making my scalp dry and scabby. I'm being given off-licence oral minoxidil in a very low dose now but not been on it very long, so can't tell if it's working yet.

I sympathise OP, I've lost 6cm back from my hairline and it's such a bitch to sort out. At one point it was really getting me down but a lovely friend gave me some headscarves and tips on how to fit them.

Sorry @Radyward that was addressed to you!

I cant face head scarves yet. I have lost a lot from one side and the other not so but work in a public facing role in an area where hair up is encouraged and its just too hard to disguise the bare skin. Im beside myself over it . Breaking down in tears. Husband says wait and see the dermatologist. There is stuff to stop it. Like im googling wigs already. I came off a support group on facebook and found it too much tk u for replying @EatSleepRantRepeat
Its so hard altho of course other diagnoses can be way worse. I love make up love looking good love clothes .its do tough no cure and soo rare. My Gp was lovely..i think i was mismanaged by another GP at the same practice. I just hope i can hold on to my existing hair. I am a wooly hat collector now and hate windy weather so have taken to wearing hair grips to weigh down by wavy hair.my head is tingling there now. Mumsnet is great to meet others that have some experience of this.honestly those photos online would make you not get up in the morning !!

To add im on
Minoxidil foam
Iron meds
Viviscal
Vitamin d
Still have eye brows and body hair TG
I

@Radyward so sorry to hear you're feeling so rubbish. Please don't be disheartened, I can tell you mine took about 6 months to start to improve but it did happen. I'm at a random stage now where I've had some new or baby hairs grow back to a couple of inches in places, but it looks a bit patchy and strange. My dermatologist is so lovely and kind, and he really understands how stressful it is. If you can afford it, it can be quicker to go private for an initial appointment to get started on a treatment plan.

A good place to look if you feel the need to Google is YouTube. I actually found some comfort in seeing videos of sheitl Jewish wig specialists and how they make and fix wigs (a bit like moira's in Schitts Creek, if you watch that). They're beautiful and so natural looking. If you're on Instagram, hairlossgirlboss is also really good. I've not wanted to go down the wig route yet as the hair I do have is shoulder length, but I can't wear it up unless I wear a thick fabric headband/scarf to cover the missing pieces of hairline.

How interesting @EatSleepRantRepeat
Ill look them up and thank you for the bitta hope.like i have curly thick long hair so at the moment u would never know but my forehead is a bit tall. Im going privately and gp has marked it urgent so fingers crossed. Tk you for the tips. Ill also tip in and out here to update on progress and others might too.the support groups online are very american focussed i feel. Warm hugs to all on this thread xx

Warm hugs to you too, keep us updated!

Off to a private dermatologist in Dublin
My apt was scheduled for May and i asked for a cancellation. Didnt hold much hope so rang Dr Cristos Tziotzios in Harley street after major googling. His initial consult is around 350 pounds -
.Was all set to book him and fly over ( i know -like im definately in a shedding phase hence the rush !!) and hey presto, an apt came up for Tomorrow. Im days researching treatments etc etc, looking at hair systems ( totally getting ahead of myself)so am going to try and stop and concentrate on well being and exercise in an attempt to destress and control ths horrible condition and really to help my mindset in the face of all this!!will report back tomorrow. Hope ye are all doing well and coping xx

That's great news @Radyward! My minoxidil seems to be working at least a little bit, I've not noticed such a big progression in hair loss as I had in the months before Christmas. Annoyingly every local wig company I've contacted hasn't wanted to book in any consultations, although I've made it clear I'm a serious customer with alopecia looking to buy. It's very frustrating.

Hope everything goes well for you tomorrow!

Went to apt. Was already crying in the waiting room !! I have been put on hydroxy chloroquine and a steroid foam plus a shampoo and minoxidil foam at night.said its not acive BUT smouldering at the moment. She took photos and measurements. Said it can be stopped and hopefully made to burn out
I have hair fluff at my hairline which is diwn to the minoxidal foam use.said i neexto see an eye specialist first due to effect of plaquenil on the eyes.due back in 4 months.she also said the pucturesof bald women dont happen now due to treatment. .instead of thinking my hair is falling oyt im now thinking yes its falling ourbut am treating it or am in treatment iykwim!!that feels so much better. Hugs to you all xx

She also said steroid injections cause
patches of depressed areas in the forehead due to the fat in the tissues loosening and prominent forehead veins which I had post steroid injections
Honestly it was very unsightly looking !! Hope all this info helps !

That's great, well done for sticking it out at the appointment @Radyward, I know it feels horrible and embarrassing! It sounds like you've had some great advice and reassurance there, and it's good news that it's only smouldering now.

I had delays seeing an NHS eye specialist due to the wait locally, but depending on what you can afford those checks are also sometimes offered at an opticians (e.g. photos of the back of the eyes). If you speak to the optician directly and tell them what meds you are on, they usually know what kind of checks you need and can tell you how much it would cost. Mine cost a couple of hundred quid, but I went to my usual optician and did no shopping around first.

(It might be that your NHS trust has fewer delays though so worth checking first!).

Hi guys. I've just been diagnosed with alopecia areata... got 10% minoxidil from a hairloss clinic but i'm seeing a private dermatologist next week to see what he says.

I'm finding this very stressful. And stressing that being stressed could make it worse. It's one small patch so far, i'm worried about what comes next.

Hi @BlackSwan! It's so stressful isn't it! Sounds like you're doing all the right things and you've caught it early, which is great. Like @radyward above, try not to do too much googling as online searches will always bring up the most severe examples - the wait always feels horrendously long but it will be worth it.

It's really knocked me sideways - it's so unexpected. It's never amazing windfalls taking you by surprise is it?
I know you're right about googling. It's hard finding that balance between being informed and scaring myself witless!
It's great that you're getting some regrowth - that's really encouraging (for you AND for me!).

@BlackSwan yeah it feels like it takes forever at first but finding the first bit of regrowth is really encouraging. To be honest even just knowing it is pausing the loss makes me feel better.

Hi, just reading the threads. I've had FFA for about 10yrs. My doctor said could have started after 3 rounds of antibiotics? They were strong ones. I noticed recently after having Covid jabs that slightly more hair loss? Not sure if connected. I have just bought a wig and its being cut to my liking, but there is a company called Lucinda Ellery.... they do hair weaves. Its quite expensive, think £2,000 plus!! but I may look into that? It could be an option. I can't let it get me down anymore..... although I hate it and look on people with thick hair enviously!!

I have absolutely researched Lucinda E to the nth degree but admittedly havent set foot in the place.have a look at FFA
and alopecia uk facebook forums online for others experience. Im thinking when the time comes CRLab extensions if possible. Its so hard as its the side burns as well as the front .i have taken to wearing hair grips either side to stop the wind blowing my hair about. I wish i didnt have it but it could be somerhing way way worse.

Just popping in to say that although I don't have FFA specifically, I've had a hair system/weave (not from LE) for about six months, and it's brilliant. Expensive, but it honestly changed my life. It's such a relief not to have to worry about scarves or powder to hide my scalp every day. Minoxidil wasn't working for me. I know it's an incredibly hard step to take psychologically, but I've been so much less stressed since I did.

There's also Alopecia World online and they have lots of forums and a big one dedicated to FFA. Lots on interesting bits on there.

Alopecia UK have a list of trusted suppliers that includes wigs, extensions and hair integration systems. You could have a look at Hair Solved too - they offer mesh integration like Lucinda Ellery but I understand it is slightly more affordable.

Thanks will do. Its nice to know you are not alone with all.this!

I spend all day fixing my hair. I can no longer wear it up atall.it definitely isint noticeable YET
.i have my husbands head annoyed asking him is my hair ok.im feeling pretty good. Hopefull i can keep the existing hair.im wondering will the new alopecia drug help us maintain the hair we have??any news with ye all?thoughts etc etc