Alopecia areata - how does it progress?

[MollieTD]

Diagnosed with this about 6 weeks ago when I had two small patches. Seemed to get a little better on its own, then the last couple of days it’s ramped up again. Today, the hair loss has been crazy - handfuls and handfuls just dropping out and massive bald patches appearing. I have almost no hair on the back of my head now and it’s probably thinner by half all over. Absolutely terrified that the same again tomorrow, and it’s all gone.

I have been given steroid cream today but not read many positive stories about this. Anyone who had AA and can give me any hope? Will it keep falling out at this rate? Will it ever grow back? I know it’s only hair but it’s really getting me down.

Hey Mollie. Just want to commiserate with you! I started losing hair at the beginning of July, by the end of the month it was so dire I shaved it all off!

Interesting that your hand eczema has cleared... I am receiving PUVA treatment for mine, and had wondered if this was a factor in my hair loss, although dermatology department said not. My thinking was that in blocking one immune response I may have triggered another.

GP took bloods and said I'm low iron, but apparently I always had been a bit low. Taking iron pills now. However in a chance meeting with a dermatologist today he said my hair loss was "not related to iron" but didn't have time to elaborate, and told me to get another referral to Dermatology!

The GP had said on the phone she could give me heavy duty steroids but I'd rather try and do things from the inside out, if possible.

It is bloody hard adjusting so quick, when you're used to having something (hair) and then it's just gone. I gotta tell myself sh1t happens. People been mentioning Sinead O'connor, etc, well hey she's dead and was a great singer, but I'm just an average pleb!

Feel free to message me if you like. We could share horror pics (if you can do that on here). Xx

@Anonymouslyikes PM’d you - thanks so much. What a bizarre situation we’ve found ourselves in!

so confused about stats and regrowth. For me, it seems like bits keep coming back everywhere, then falling out again. Lost most of a remaining eyebrow last night after it looked like there was a bit coming back in. I guess I probably have to come to terms with the fact it’s never coming back but it’s hard to give up hope.

Another weird thing that’s happened over the last week or so is my nails - I’ve read about ridges etc and I think I’ve always had these on and off, but now it looks like I’ve trapped some of them in a door - they’re bruised and wobbly and literally look like they’re going to fall off! I’m guessing this isn’t a good sign.

@HandfulOfFlowers if you see this - mine has progressed now to just half an eyebrow and maybe three lashes. I assume these will be gone soon. How on earth did you make your peace with it, knowing it’s not ever coming back? I can’t even stand to walk past a mirror atm.

The thing with alopecia is you never really know what will happen, but I much preferred to be in a place of calm acceptance rather than a place of false hope. To me it's about accepting the new you. I think it's natural for that to take time though, so don't beat yourself up about not wanting to look in the mirror just yet. Getting a wig and having my eyebrows tattooed was liberating, it meant I wasn't always thinking about it, and it wasn't a discussion topic for all and sundry. I now have friends and family, including my children, who have never known me with hair, and I think it really helps that it just isn't something we feel the need to raise very often. The day I stopped fighting was the day I moved on with my life. I hope you find that place too.

@HandfulOfFlowers thank you. I’m down to about 3 lashes on each eye and that’s it. Maybe a couple of wispy pubes 😂 I hate it so much. The lack of nose hair especially is AWFUL, never appreciate how much it did. I’ve had my brows tattooed which helps a bit. I can’t help just hoping that it will start to come back but I’m aware the longer this stays the less likely it is. Also the fact I’ve now lost all my hair everywhere seems very very unlikely I’ll ever be the same again.

I just want to give you a big hug! I’ve had AA on and off since my second year at uni. Usually lose one or two patches the size of a 50p then am fine for a couple of years then it happens again. I’ve been quite lucky as most of the time they are in places I can cover but the latest ones have been around the edge of my hairline which has been annoying as I’m left with regrowth that just isn’t long enough to do anything with!
I remember that fear the first couple of times it happened about the fact it may keep going and not stop. I absolutely would not describe myself as fashionable (neither would anyone who knows me!) but when faced with the prospect of losing my hair I was so upset, much more so than I had anticipated. Notably mine normally happens 3-6 months after a stressful event - it’s like my body’s way of taking a sigh of relief.
I hope it grows back for you eventually but you have my sympathy right now. Xxx

@PoppityBoo thank you :) yes when mine started I had one patch when pregnant which went away after a couple of weeks then another when he was 10 months which I though nothing of until it progressed very quickly to this.

interesting about the ‘breathing a sigh of relief’ - I’ve had about 5yrs of ivf/miscarriages finally followed by pregnancy wracked with anxiety as you can imagine and a difficult birth - then prior to this happening I had a few weeks of just feeling like I was about to come down with something, swollen glands, sweaty, achey but nothing came of it (it wasn’t covid!) I wonder if it’s a combo of hormones, breastfeeding, things being generally shit for such a long time that now things are ‘normal’ it’s just a bit reset.

Down to one eyelash now - that’s the only bit of hair on my whole body. Such a bizarre look.

DH had it. Started small with patches easily hidden, but after about 6 months all pigmented hair on his head had gone. Bizarrely, the few grey hairs he had, held in. It was a very particular stress with him. And when the stress was over it gradually came back, though much thinner, but it doesn't look particularly odd now, just like a person with thin hair. This was about 10 years ago and since then he has had the odd patch, but nothing that could not be concealed.

@Somanycats that’s really positive! Did he just lose head hair? And a question you don’t have to answer but did it affect your relationship?