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.

Just bumping before I’m entirely bald 😂

Hi Molly,
I have alopecia, and I'm afraid to say that one of the difficult features of this disease is that it is extremely unpredicable. Your hair may stop falling out right now, or it may go on to get worse, either rapidly or slowly. The whole cycle of hair loss in a given area and regrowth there can take a long time - at least several months, often longer. When it has regrown you might never have the same experience again, or alternatively you might be vulnerable to repeated episodes.

For me, the first patches were at about age 12, and during the next half a dozen years or so I had repeated severe episodes, sometimes losing almost all my hair. Then it more or less left me alone for decades - just smallish patches coming and going. Then unfortunately it got much worse.
But everyone is different. It is very distressing, I know, to be faced with this unpredictability. I think that having your hair cut very short can help. Although it makes it harder to hide the patches, the remaining hair looks and feels much stronger and healthier. And you don't have such a large volume of falling hair to distress you. Also, you kind of feel like you are 'taking charge' rather than being controlled by the condition

There are an awful lot of fake remedies being marketed. They don't work. Just focus on your authentic medical treatment and on taking care of your general health. Things like a good diet and managing your stress can'tcure alopecia but they do put your body in the best position to regrow healthy hair when the autoimmune attack subsides. xx

I had a single patch - oval - about 9 x 7 cm
Was there for about 6 months (could've been more - just noticed one day while I was blow drying hair). I was trying to arrange private steroid injections. Luckily, one private dermatologist didn't reply to my plastic surgeon (Botox etc) and I sort of forgot about it and I went to the hairdresser and it had started growing back
It's unpredictable
Fingers crossed for you x

Positive story here: my dd has had aa since she was 8. Then, during her GCSEs a couple of months ago , she started seriously losing it and lost half her hair. It was quite the nightmare! There was a point at which we thought she might refuse to sit them. Referred to a dermatologist who prescribed dermovate. Said stress of GCSEs had exacerbated it. All started growing back within a few weeks and GCSEs were saved! She has about a centimetre covering of hair all over now and we’re delighted! So takeaway: try to de stress. See a good dermatologist . Ask about dermovate. Wishing you all the best.

Almost all of mine fell out in mid teens, never knew why. I had a few different wigs and really enjoyed wearing them- was like dressing up for me. I cut my hair short when the bald patches became really obvious.
It all grew back after a few years, and I never ever lost it again.
It really was initially terrifying when it was coming out in clumps but once I had the diagnosis I kind of accepted it and went with it. I don't feel it made me unattractive and it definitely made me interesting!
Best of luck.

olumiant is a tablet for AA. A new medicine has just been approved in the US called litfulo and is due to launch in the EU in winter this year. But this is for severe cases and has side effects.

I had my first bought of AA at uni with a patch on the top of my head and behind my ear. Grew back wasn't noticeable after a year or so. This past 6months the patch behind my ear has fallen out again I actually think we noticed it at its worst point as its now growing back in quickly. Its so hard to tell how it will behave.

Also to add, my husband gets patches periodically (it must be genetic). They always grow back. It doesn’t cause him any stress these days. Also, you should get blood tests for various underlying causes: coeliacs, thyroid etc.

Oh thank you all so so much! I have been prescribed Dermovate and have been using this a couple of days so hopefully this helps.

everything I’ve read is about it’s unpredictability - I’ve lost A LOT over the past couple of days, ti the point my head feels cold! Ive always had very very thick curly hair so this feels bizarre.

All these stories have made me feel much less alone and upset about it - I’ll keep going with the treatment and see what happens. Considered private treatment, financially it would be a stretch but if it’s something that works then I’d find jt. Not even been able to see a doctor face to face yet on the NHS.

Thanks so so much for sharing.

To anyone this is relative to - was it linked to your menstrual cycle? I am 12 months postpartum and was lucky enough to barely lose any in pregnancy and following the birth. This has only happened since I stopped breastfeeding and my periods came back - seems like the closer I get to my period, the worse it gets, then it settles.

*relevant, not relative!

@Ihavekids I’m definitely up for a wig should this get much worse. I would rather take it all off if it gets any stringier and combover-esque. How did you go about finding one?

Hi Mollie

My DD suffered with AA between the ages of 5 and 11, I really do understand how stressful it is.

My daughter wore wigs full time for around 5 years - some NHS trusts provide 1 per year if that's a route you'd like to try.

My DD has finally (in the last month) given up her wig as her hair has eventually grown back well enough - I promise there is light at the end of the tunnel 😌

There are a couple of really good online wig shops that are very understanding about people ordering two or three and then returning all but one.

But (if you do decide to try wearing a wig), it is probably best to go to an in-person shop the first time and get assistance from anexperienced seller. It will help to reassure you and give you confidence. I think there are lots about. Most big towns are likely to have one. Some are hairdressers too.

Some NHS trusts have designated suppliers (ie ones where you can use your NHS voucher) and will give you contact details.

You can get ££££E human hair wigs, but in my experience there are a lot of excellent mid-range wigs made of acrylic .

Re menstrual cycle, I haven't personally noticed a correlation. However, I do wonder if something hormone-related is a trigger for me. Because it started about the time I began having periods and worsened very drastically around the menopause, and was relatively peaceful during the years when I was on the pill. Just speculation though.

@Random789 interesting - I know it’s all anecdotal but it really does feel linked to hormones. I went through 6 rounds of ivf to have my baby as well, so it makes me wonder if that’s a factor, either stress or the drugs. Or, on the flip side, if it was an autoimmune reaction which meant I struggled to get and stay pregnant. But I’m certain it’s all related somehow!

Just an update - I’ve lost almost all my hair, still hanging in to some stringy bits a la Gollum for some unknown reason. Body hair gone too.

Ach, that's bad luck Molly. I'm sorry you are going through this. I've lost all my body hair too -- didn't want to mention it before in case it was scaring you needlessly.

My armpit hair hung on the most tenaciously. Thanks for your loyalty, armpit hair, but I wouldn't have minded if you had checked out a bit sooner.

It might all regrow soon, but if it doesn't there are wonderful options for tattooed eye liner and eyebrows. (I've yet to come across any minge tattoos though. I know a baldy vag is highly desirable among plenty of women but I used to love my generous bush )

@Random789 I can’t say I’m particularly devastated at the prospect of not having to shred my knees and ankles with a razor any time soon but it is a bit odd to have handfuls of pubes falling out too 😂
Did you shave your head? I’m not sure why I’m still holding onto the long string bits left either side because obviously it looks horrific but I’m not sure I’m ready to get rid!

I did shave my head. I have no hair now, but when I just had a bit of hair it felt quite empowering and a relief to shave it off. It looked tidier, stronger. And the experience had a gratifying 'fuck it' quality!

No experience but wow OP you sound so positive and im in awe of you. X

My ex had alopecia totalis - all head and body loss. It started with a coin sized patch on his head, and within about a month it was all gone. Even inside his nose, and most distressingly, his eyelashes and eyebrows. His got awful eye soreness because his eyes had no protection. He wore hats all the time, not for vanity but for protection from the sun.

He was like that for three years, then he finally started getting some thin, fine white hair on his head which gradually thickened to something resembling normal. It never returned to his underarms or pubes, which he was happy about .

It's such a maddening condition! You never know how, why or when the stages are going to happen. Best wishes to you.

@ShippingNews my eyebrows have thinned but are clinging on for now, one set of eyelashes are relatively normal and the other eye has big gaps. Nose hair seems fine, though can’t say I’ve ever paid much attention to how thick that was!

And bizarrely, I’ve had eczema over my hands for years, as soon as the hair loss started, it’s cleared up entirely!! And my skin and nails look bloody fantastic. Maybe this is the trade off!

I started with AA 25 years ago just as I was leaving uni. As PP have said, the unsettling thing at the start is that it's unpredictable and there isn't always a specific reason for you having it. I definitely found it less stressful once I took the plunge and got a wig. There's so much choice, and you don't have to pay the VAT if you have alopecia. Definitely go in person, they are usually excellent about privacy, advice etc. Mine soon moved to universalis and I have had no form of body hair for over 20 years now. I love not worrying about shaving my legs or what my bikini line is doing! I had eyebrow tattoos for many years, which I would recommend if you're still quite young. I stopped with that recently as my colouring has soften with age and I don't feel I need it any more. I could never be bothered with fake eyelashes, but I wear glasses so it's less noticeable. I know this might sound odd to you now, but I really think it's better if it does all fall out because you're no longer in limbo and can move forward.

Hi Molly, I developed alopecia areata at the end of 2019. Like you it started on top of my head in 3 big patches which I could just about cover with a combover. By the time the GP had sent photos to dermatologist it had accelerated rapidly. I kept waking with my mouth full of fallen hair. I ended up with a just a tuft of hair at the back of my head like a reverse tonsure. I was prescribed dermovate lotion. ( Much easier to apply than cream) I used scarves and hats indoors ( my head was cold!) And bought a wig online from Simply Wigs who were very helpful over the phone. My hairdresser was also very helpful, trimmed my remaining hair and the wig but advised against shaving my head. I also lost one eyebrow.
The wig looked good, much more stylish that my real hair. I did tell friends who admired my new hairstyle, mainly because I didn't want them to worry that I had cancer.
After about 4 months, my hair started to grow back. White and curly where it had been fair and straightish, though it's since gone back to normal. It was lockdown, so I had a strange sort of mullet until the hairdresser reopened! I was under quite a bit of stress with a house renovation at the time. It did happen again this winter, but only a small patch, it grew back when I reapplied the lotion.

Good luck.

@Quinque that’s amazing, thanks for sharing! Interesting that they advised against shaving your head - do you know why? I really just want it off, mainly because I cut myself a dodgy fringe a couple of days ago to hide a new bald bit and now that’s come out in chunks too!

it’s funny because I would say the last 5 years have been incredibly stressful and this year has been the least stressful year I’ve had - the only big thing is that I gave birth so I’m sure that/breastfeeding has something to do with it.