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.

That's really interesting. One of the more effective treatments for alopecia is the application of an irritant (diphencyprone) to the scalp which provokes the immune system to draw its troops away from the hair follicles to cause an excema-type reaction (in responseto the irritant) instead, thus leaving the follicles free to do their thing. It sounds like you have had something like the reverse troop movement.

That was a moderately effective treatment for me, for a while.

I suffered for about a year when I was about 23. My hair fell out in loads of patches and I was miserable and cried all the time. I changed my diet (previously vegan) and upped my calories, and also I finished uni. I went into a very stressful career though so not sure it was the reduction in stress.. my hair all grew back, its grey in the places I lost it! Never lost it again and I'm 32 now

It happened to me about 15 years ago (I was early 40s). My hairdresser
noticed a latch about the size of a 50p on the back of my head, I was growing out short hair at the time so had enough to cover it. Over the course of about 6 months I lost about half my head hair but all at the back and sides, the crown all stayed put so it was only noticeable if the wind blew it. I found it extremely distressing - I was also in a very stressful job and there was one particular incident about a month before it started that I think may have triggered it. I am also genetically predisposed as both my parents have had it at times.

I lost my eyebrows but not lashes, arm and leg hair but not armpits or pubes. I saw a dermatologist on my work private healthcare who prescribed steroid gel and sent me to a wig shop - they were so kind. I didn't end up needing the wig because they also gave me camouflage cream to paint on my scalp, it was dark brown to match my hair. This did wonders for my confidence. After a few weeks on the gel white fluff started to grow back in the original bald patch, then over the course of a year they all started regrowing, it went dark again at about a cm long. I think redundancy and removal of work stress helped too, I stayed off work for a year. I had one small patch recur a couple of years later but nothing since. I have had my brows tattooed and love them. I have just, ironically, had laser hair removal on my armpits. It took me a long time to feel I had really got over it but I don't often think about it now.

Thanks everyone. I’ve chopped off the remaining straggly bits and have a hairdressers appt tomorrow to see if they can tidy it up. My baby will not stay asleep tonight which isn’t helping the stress levels!!

@EversoDetermined and @Zola1 It’s so great to hear it grew back. So scared this is it now.

Yes, I remember that feeling all too well. Unfortunately it is really unpredictable. My scalp tingled in the bald patches and for years after the slightest tingle had me panicking. It hasn't come back though and my hair is really thick again, you'd never know apart from the brows.

I think the reason they advise against shaving is cosmetic, especially if you have dark hair/pale skin (like me), as soon as you get any regrowth (even 5 o'clock shadow) of your remaining hair it looks very patchy on your scalp.

So I’ve taken the plunge and shaved it all off. Lots of tears at the hairdressers but honestly, I don’t think it looks terrible and it’s SO much better than stringy combover bits!

Oh bless, that must have been hard but it does sound like the right thing to have done.

So I’m two weeks post-head shave and almost no regrowth. Bits that did fall out straight away. All my body hair is doing the same thing. Everything I’ve read suggests this is it and as much as I thought I was okay with it, I’m really really not.

Oh, I'm so sorry, it's just awful.

Hi op, really sorry to hear you are going through this. I don't have alopecia but do have hair loss/thinning due to hormones (I think).

There is a you tuber I follow who has Alopeica called SL MissGlam, she did a whole video about her alopecia and her re growth, she still has many patches and her hair loss seems to worse then better but she talks about seeing a dermatologistand various things she has tried.

Hi OP, sorry you are going through this. Im not far behind you and also not ok with it at all. I have scarring alopecia so no chance of any of it ever growing back. I can’t wear a wig either due to allergies. I haven’t joined a support group, but considering it. Hang in there, you’re not alone. It’s ok to hate it. It’s ok to feel miserable. My therapist was saying it’s a type of grieving process and there is no pressure or need to get to accepting this quickly.

@Coriolise I’m so sorry about yours too. It’s just shit.

I developed AA a couple of years ago. Saw a consultant dermatologist who specialised in this area. She advised me to take strong iron supplements, as blood tests showed severe anaemia.

She also did a steroid injection into my scalp and prescribed a topical lotion to apply at night for 6 weeks. She also advised me to take a particular supplement that I bought from Amazon.

Very pleased to say that the hair regrew completely within 6 months. Hope it gets resolved for you!!

@Acourtof wow that is impressive, im glad it resolved for you. Can I ask what supplement it was?

@Acourtof that’s amazing! I’ve had all my bloods back and iron and b12 whilst ‘normal’ are literally just 2 numbers into the normal range (and I am already taking supplements for both) so I’m going to question that one and see if there’s anything stronger I can take.

@primoseyellow thanks for the recommendation and sorry you’re dealing with similar.

I think that’s what I’ve pinpointed today that’s the worst thing - I’m sporty, outdoorsy, very low maintenance and hate now I’m spending ages in the morning drawing in eyebrows and checking how I look in every mirror rather than whacking my hair in a bun and off I go. I’ve never ever felt self conscious about my appearance or felt the need to wear loads of makeup or get beauty treatments but now it’s all I’m thinking about. It’s such a huge lifestyle shift in amongst all the shock.

@primoseyellow it’s called Viviscal. It’s quite expensive. I think £30ish a month, but I was willing to do whatever she advised. Sudden hair loss like this is just heartbreaking.

@MollieTD definitely research the readings. After doing my own research I don’t trust the NHS guidelines for “normal” results. I think they’re set to avoid them having to treat masses of people with non life threatening conditions!!

@Acourtof thanks ill have a look at that.

@MollieTD me again. Just a thought on eyebrows… microblading can be amazing nowadays. Avoid randoms from Facebook with black caterpillar eyebrows!!

I did a lot of research on different options and the Phi Brow accreditation seems to be a leader in this field. So happy with how it looks and it’s lasted a lot longer than originally expected.

@Acourtof thanks so much - I’ve been wary of even looking into it after seeing some truly awful ones!

should have said above, I didn’t mean that to sounds arrogant, I am perfectly average looking, I’ve just manage to maintain for most of my life an attitude that I don’t really care about how I look to others as long as I’m clean/groomed etc! It’s like going through a bizarre puberty, having a proper identity crisis.

I totally get you on the eyebrow thing. I'm also a low maintenance person beauty-wise. When I lost mine about 15 years ago eyebrow make-up wasn't popular like it os now, you could go into Boots and there would be literally two eyebrow pencils, brown or black. I hated having to do them every morning, try and get them even when I needed to get the DCs to school, worry about them rubbing off if I got sweaty exercising. Mine were dark so the absence was very noticeable. I had them tattooed (not microbladed) about 4 years ago and that has made a HUGE difference to my self confidence. They have faded a little but I use an eyebrow felt-pen to draw hairstrokes onto them and it only takes a few seconds.

Lost literally half an eyebrow in my sleep so I think micro blading is something to look into. Why isn’t it stopping???

@MollieTD Hello! Oh my I completely know how devastating it can be and am here to offer you some hope. I developed AA during my last trimester of pregnancy and it was awful having hair fall in droves, Im not sure if it was stress related or the pregnancy hormones but hair kept falling for 4 months till after I gave birth. I also started off with thick hair and though I keep telling myself it is purely cosmetic (hair loss and not something worse), my confidence took a definite hit and I was scared of going out, doing normal activities, etc.
I am now 3 months postpartum and have been prescribed the newly approved drug Olumiant (baricitinib) - it is costly and does come with a series of blood tests for constant monitoring but the results have been great after 1-2 months of taking the tablets. I would say I lost around 60-70% of my hair and it was really thinned out, but now my hair has all grown back - short hairs but regrowth nonetheless! I am not sure if you would consider this but hope that this will give you some hope.
Not sure how long I need to continue on the medication, I will leave my dermatologist to advise, and am aware that the nature of AA is such that there could be recurrences, so I also bought myself a wig and have been using that till the hairs grow back properly.
Sending hugs and encouragement - you're not alone!

@Singasing are you in the U.K.? I’ve read about this but the side effects seem terrifying and not sure if it is available in the U.K. or just not on the NHS.

been referred to aN NHS dermatologist with a waiting time of over A YEAR to get a first appointment. I can’t afford private. Lost all hair now except for half an eyebrow and a handful of lashes. No regrowth at all. It’s def not coming back now.