Frontal fibrosing alopecia

[DustyLee123]

Does anyone have this? I’ve just been diagnosed even though I lost hair several years ago. Doctor spoke about trying an anti malarial drug that can have side effects that affect your vision.

Yes I was diagnosed with this quite a few years ago.
I attended a specialist clinic for quite a long time.
They can't replace the hair that has been lost because the hair follicles have died. So the emphasis is on trying to stop the condition spreading and save the hair you have.
I was given various treatment to try, including one which had had some beneficial effects for men regarding baldness. That was really embarrassing because pharmacists used to tell me when I collected the stuff " you do know this is meant for men don't you? " and were obviously reluctant to give me it.

None of the treatments worked and I was offered the one you are talking about that has the unwanted side effect of possibly affecting my vision. I refused the treatment because although losing my hair was devastating it wasn't half as important to me as the possibility of losing vision. And there was no guarantee it would even stop the hair loss.
So I've worn wigs now for quite a few years. I get a prescription for 4 full wigs a year and chose them at a salon. I am very very grateful to the NHS for providing me with this prescription as it makes life bearable - I'm.virtually bald with only hair at the very back of my head which I shave off..
I'm sorry you have this condition too OP.
But life is liveable with it. Although I would be a liar if I didn't say it hadn't affected my self confidence.

I have it. I have bouncy curly hair which hid the bald patches. You only really see it in photos I think. I have it id say 7 yrs. I am on every drug available. Plaquenil is the drug that may affect vision. I just get regular eye checks .my hair loss has slowed and I have " some fluff" at the fromt hairline. My fab dermatologist told me to go straight to boots and get perfectil max 3 for 2 which thickens the hair follicle. I still look good. I know no one has clocked it and my hair dresser says she will tell me the minute I look odd. Its a sort of life sentence. My derm maintains she can control it and it burns out. She is so sympathetic . Thought I was mad at my first apt. Thinking there was nothing that could be done ( through my floods of tears )

I miss the old me.
I have gone quite glamorous with earrings.clothes, tan as to draw attention from my hair BUT the biggest issue for me " covering this up" is a lack of eye brows. They are scantish.omg no way to tattoos. I don't know what to do but I do find the Benefit brow kit really fab for filling in.
I go privately to a dermatologist in Ireland. I nearly flew to see Dr Christos Tzuatoz ( not the right name but you can google him ) he us in london.one of the foremost people on the research of this.i didn't find him badly priced for a consult .
Just one tip. The images online are frightening and I am off all forums. Off all instagram to do with FFA. I'm on my own journey.
Good luck and lots of hugs to you !

I used Perfectil for years and every hair thickening shampoo going and tried everything commercially available and it made no difference whatsoever.

I had very fine hair all my life before the hair loss began. So you having thick bouncy hair is a real bonus for you.

Everyone is different. I'm glad your experience has been positive but it really depends on the individual so whilst I wouldn't want to depress OP I don't think it's kind to give the impression all will be the same for OP. The specialist I saw was the leading expert in the disease in Scotland at the time and I still ended up as I am.

I agree that the loss of eyebrows is a real issue though. I was offered eyebrow tattoos on the NHS and went along for the allergy test they do before the tattooing. I didn't go ahead with the tattoos because of the history I have of allergy to cosmetic products which used to affect my eyes. So I use eyebrow products to give me eyebrows now because I can't used to seeing myself without any.

I know @Sunnysunnyagain
The two posts are so contrasting. I know every journal says the same thing it's progressive and no hope but she maintains there is burnout. I'm lucky with my hair. I'm upbeat Today but other days not. We are off to Chicago next week with DH and Children and I'm worried about my hair flying in the windy city.
Hugs to you too xx.

I’ve had a look at the Perfectil, but it says there’s a caution with it if you’re on thyroxine, and I am.

Hello, I have it (FFA). I was diagnosed in my thirties and took plaquenil for five years. It seemed to burn itself out and I stopped the plaquenil. I'm in my early fifties now. The inflammation at my hairline started up again recently. I went back to my dermatologist who luckily took me back as a former patient (because he isn't taking on any new patients)and he gave me a prescription for plaquenil again. I restarted it two months ago. The inflammation went down straight away. He says it's a safe and effective treatment.

I have lost nearly three inches at my hairline. I have thick curly hair. I wear a hairband to cover up my uneven and dented hairline. I'm also not fond of the white 'scarred' area of skin where I have had hair loss. I can't cover it with foundation very well, so I prefer to cover it up. I have no eyebrows. I get them done (semi-permanent makeup) once a year but they fade away very quickly (also 'scarred' skin) so I also use a felt pen thingy from the Maybelline range.

This is not a well-known condition and it's lonely to have to cope with it on your own, so sending you a hug of solidarity and wishing you well.

I have its cousin, LLP, and have been on the anti-malarial you mention (Hydroxychloroquine) for about a year. The vision risk is very rare and tiny and so long as you are being monitored, there isn’t anything to worry about.

I have terrible eyes and am already at high risk for retinal detachment because of extreme short sightedness (>-20 dioptres and post concussion syndrome). I asked my ophthalmologist if there were any reason why I shouldn’t take it and she said no so long as I keep seeing her once a year or immediately with any vision disturbances which is what I have anyway and have for years.

The Hydroxychlorquine was my last option for something that would work and it has been slowly reducing the inflammation and no new scarring has happened since I started on it. Usually you take it 18-24mos and that knocks the alopecia into a remission of sorts and then you repeat if/when it flares up.

There are JAK inhibitors you could ask about, but given my cancer history it was not advisable that I try any immune system inhibitor. They do increase cancer risk especially for anyone who has ever had cancer of any type.

So anti-inflammatory is the route I went down, and I don’t regret it at all.

@DustyLee123 Hey, I’m late to the thread, just seen it. I was misdiagnosed over a telephone conversation with a dermatologist during lockdown. She said it was alopecia areata, and gave me a prescription for both my hair and eyebrows. I knew it was FFA and that it wouldn’t grow back so didn’t take the medication. I was initially annoyed that I was being given false hope.
I have largely accepted it. Mine isn’t as bad as some women I’ve seen, I can mostly disguise it (except on a windy day!) but I have a gut feeling it will get worse in future. I really, really miss my eyebrows.
There is a Facebook group that you might find useful Frontal Fibrosing Alopecia FFA, lots of people on there have tried different treatments.
Good luck. It is a horrible condition and I have my down moments. I’ve recently found out that it can affect the facial skin, (cobblestone skin and facial papules) which is a bummer.

Hi late to this as well. Just been diagnosed by a Tricologist. Am trying to get to see my GP but they're not taking it seriously. Should the GP refer me to a Dermatologist or will I have to go private?

I was referred. Given two ointments, one made me itch, so just using the steroid now.