Any alopecia people out there?

[AlphaNumericalSequence]

I've had alopecia for decades, on and off. Recently my alopecia has become much more aggressive, evolving from the patchy sort to universalis.

I've had steroid injections in the past, and I am just beginning diphencyprone treatment - a fun therapy in which the scalp is painted with a highly allergenic substance in order to persuade the wayward mercenaries of my immune system to call off their attack on the hair follicles and beat up the diphencyprone instead, causing blisters and redness in the process. The success rate is pretty low, but I decided to give it a go.

I just wondered if there was anyone around who wanted to have a moan-in about this condition.

In particular I am finding it harder than I expected to cope with the loss of eyebrows and eyelashes. The cosmetic aspect of that loss is pretty awful. I feel like a space alien. But it is also very uncomfortable: my eyes are so exposed to dust, wind, sweat.

I've just ordered some specialised sunglasses, that have padding around the lenses to keep out grot and wind. Pretty sure they will make me look freakier than ever. Ah well.

It's funny, isn't it, the different sensitivities that we all have, Jellyslice. To me the word alopecia seems quite neutral (a bit ugly and medical but nothing more) but it seems that for you it is something worse than is conveyed by the words 'hair loss'?

Is it because it conveys a more pessimistic outlook? I suppose there are other causes of hair loss (low thyroid etc) that have a clearer and more effective treatment.

Sorry you lost a post Fortnite. Hope you get a chance to retype it.



MN is driving me demented and still no emojis!

Anyhoo. I was only wanting to say that shaving my head was actually the best thing I did and I can totally recommend. (With the caveat that if I was still working I would have to wear a wig for work. Bald = acceptable, bright Mohican = definitely not!)

If someone had said "shave your head" to me at the beginning of my hair loss I might have punched them laughed. Actually having it done though, I realised how much time and headspace I was giving to examining my head, fretting, buying special shampoos, looking at headscarfs, fretting more, asking everyone if it was noticeable all the time, playing with hairbands and styles etc etc. It has freed me from all that.

After trying the gradually shorter haircuts and still hating my head, DH suggested shaving it and seeing if it helped it grow back. His attitude been the biggest help to me in feeling so happy with it tbh. At first he shaved it all (except the narrow middle strip which wasn't too patchy compared with the sides) with a guard and kept stroking it and saying how velvety it was (it wasn't, it was bristly 😂) but I could still see obvious bald patches so eventually we shaved it to the bone 😬 and with the dyed middle bit it looked more of a deliberate choice, if that makes sense. DH kept saying how fab it was and we have such a giggle shaving it, it's made it a really fun part of the week 😃 He genuinely seems to like it so I feel much much happier and more secure than I did before trying to hide myself.

I'm pretty sure I don't look stylish, in fact I'm sure a lot of people look at me and think mid life crisis or attention seeker  However I do get quite a lot of people admiring it and I think they don't realise it's due to hair loss, it's just how I want my hair, which I like tbh!

I understand about the word "alopecia". I think or lot of people have the automatic associations of Gail Porter or total baldness and have feelings of pity or don't realise just how distressing it is. Funnily enough I find alopecia areata easier, maybe as it sounds more medical or raises awareness that there are different types and we aren't all the same?

It's lovely to find people on this thread who really understand.

Ooh that was really long, sorry!

I did shave my head a couple of times last winter, but never for 'public view' because it was after I started wearing a wig.

It felt really good, actually, to be shaving it. I felt in a way that I was 'taking back control'. Thinning, falling hair is so dispiriting, and quite yucky. Shaved hair feels clean and strong and bright in comparison. I liked discovering the shape of my skull and I really liked the tactile quality of it, the very soft resistance of the tiny short hairs a day or so after shaving.

Now there is nothing left to shave. (

It is really interesting to hear how you progressed through shorter and shorter styles, and how liberating you found it to give up on all the time-consuming strategies, shampoos, scarves, etc.
I do think that if my hair regrows to any extent I will abandon all those sorts of strategies and keep it really really short. Not sure how I would go about it. I'd like to think I was capable of a blue mohican but I doubt it!

I have to say that if I didn't have the middle strip I might not feel as happy about it so do realise I am lucky in that respect. I think it makes me feel like I still have a "hairstyle" as it can be spiked or quiffed etc.

I don't know if I would be so happy with it if I was totally bald, but I would still appreciate the relief from the fretting. Plus it has freed up so much time, not only the special shampoos and fretting period but when my hair was long and thick, I spent hours a week washing, drying and plaiting it. In fact I used to moan about it

Being to get out of the shower and pool with pretty much a dry head is also very useful, but when I'm in the pool I do feel a bit self conscious as my head looks weird when wet. Alpha I just read back and saw your gym issue, what about something like a sports/towelling handband/bandana? I'll put a pic of one I use in the house and was considering taking to the gym for after swimming to keep my head warm, the bow might be a bit much though perhaps a plain one?

Gyms can be hard as you can feel vulnerable and under scrutiny, I know. Do you go alone? I'm not allowed to swim alone (epilsepy) which irritates me sometimes but probably helps me feel less worried.

Totally agree about the feel of it alpha, DH has got into the habit of stroking my head at night as though I'm one of those stress toys

Forgot the hairband! There is lots of similar ones (also without bows ) mine was around £2 from Amazon.

PS Again, sadly not me modelling it

I have frontal fibrosing alopecia, a scarring type where the hair will never grow back. The cause is unknown but it's getting more common. Also no eyebrows, few lashes and no arm or leg hair (a plus point). I've lost approx 3 inches from the front and side hairline and it continues to slowly recede. I'm gradually cutting the remaining hair shorter and shorter and wear a wig now.

Sorry to hear that, user56. I'm not familiar with that condition. Is it another kind of auto-immune attack on the hair? I hope the scarring doesn't contribute too much additional horribleness for you, on top of the hair loss.

Thanks, alpha. It is believed to be an autoimmune condition, possibly triggered by chemicals in sun creams, moisturisers etc, but no one has worked it out yet. It was only identified in the 90s, so seems to be an alopecia of modern life! I guess most alopecia are pretty mysterious! Is yours active at the moment?

Yes, hyperactive I think. I don't know why it has suddenly started attacking hair all over my body after 40 years of just being patchy head-hair loss.

Thanks for the headband info, Fortnite. I do sometimes use a very wide headband in the darkness of a spinning class. It more or less covers my scalp but lets a bit more air in than a full headscarf.

Could I ask, those of you who wear wigs, is there any you would recommend? I tried a few a while back but I always felt they looked wrong, I had a small budget though!

I like this company www.simplywigs.co.uk based in Huddersfield.
They are reliable and have a really good range, starting at around £100. I think they do sales sometimes.

As I don't go to the hairdresser any more, £100 seems ok, and my last wig lasted a year before beginning to look a bit tired.

Oh thank you user, I really like this one (I miss my plaits!) but I think the fringe may look odd on me.

I'm thinking I could maybe use the ones I have and just stick a bobble hat on so it looks like "proper" hair - my wigs all look a bit, well, wiggy on the top!

I had a wig fitted, but didn't actually use it (my loss slowed down before it got to the point where I needed one, and then grew back). I got it from a shop in Portsmouth.
www.trelogganwigs.co.uk
They were so kind, so helpful and it was a lovely wig. I've kept it just in case.

Simply Wigs is a great online shop. And also Trendco (despite the naff name).

My wig would have cost about £300, but you don't have to pay VAT if you have a medical condition that requires a wig, which knocks off 25%.

And in some areas the NHS gives you a voucher to cover part of the cost (although lots of shops don't seem to want to accept these).

You can pay hundreds and hundreds more than I paid, especially if you want one made of real hair, but I'm not sure the more expensive ones are really much better.

I could write a HUGE post about how difficult it is to transition to wearing a wig, how odd you look to yourself even if the wig is fine, and how difficult it is to feel you have an objective picture of how acceptable the wig looks. But having made the transition I do feel a lot better about myself.

One thing that helped is that I am now well into middle age, and women often tend to have a slightly more styled and 'artificial' look at that age, as the natural state of their hair gets worse and worse .

So the rather styled look that wigs can have seems to sit with you more easily as you get older.

Also, middle aged women often spend a lot at the hairdressers! so the cost of a wig seems more in keeping with 'normal' grooming costs.

Sorry to resurrect the thread but I think I might just be starting out with Alopecia Areata and I was wondering if any of you could tell me how yours progressed.

Currently I have a bald spot about the size of a 2p coin but the GP couldn’t tell me if that would be it, if it would get bigger, more would appear or anything much tbh. It’s all abit daunting!

Hi, Gothic. Sorry that you have this worry.

One of the difficult features on the condition is how unpredictable it is. It could very well be that your patch doesn't get worse, that the hair grows back, and that you never have a patch again. If that is what happens, it will probably take at least six months or so, and perhaps a year, for it to recover completely.

Alternatively, it could grow back for now and another patch could appear at a later date. Or this episode could get worse, so that you develop multiple patches.

The likelihood would still be that these would grow back within a year or so.
It is only in rare cases that the hair loss can be total and permanent.

Because of its unpredictable and erratic nature, there are lots of quack remedies around: when a person's hair eventually grows back for reasons of its own, it can wrongly seem like the 'remedy' has worked, even if it is completely ineffective.

So I'd advise ignoring all possible treatments except those from doctors.

Do push for a referral to a consultant if you would like to try treatments. They don't have a brilliant record, but they are successful for some people in bringing an episode of hair loss to an end. The main treatment option is steroids, either as a lotion (not very effective) or 'injected' into the scalp (quite significantly effective in a lot of people). It isn't really an injection - the steroid is forced into the scalp using some sort of hi-pressure jet, and it isn't painful.

Other than that, just take care of your general health and nutrition, since hair grows more effectively when we are healthy and nourished.

Good luck!

I lost all my hair, body hair and eyebrows when my thyroid went kaput. Took years to come back and it nevercame back properly. I keep it cropped short now, like super short. Every now and then I have an autoimmune flare up and it comes out again.

I do find it depressing. One benefit of going grey is that the hair is thicker than the baby hair otherwise! I kind of just live with it and try to make it short and funky so it looks deliberate. Hiding patches is hard, especially as, as a teacher, kids just point it our, but I just tell the truth and they accept it.

Menopause isnt helping. I feel pretty unattractive at points.

Hi all,

I though I'd share news of how effective the diphencyprone treatment has been. Much to my surprise it has worked quite effectively. I currently have hair on about 70-80% of my scalp! It is still fairly thin/sparse, but SOOOO much better than I had expected.

The treatement isn't actually diphencyprone alone. I also apply something called dithro cream, which is a psoriasis treatment that has been shown to boost the effects of diphencyprone used alone.

If anyone wanted me to post more detail about my treatment and the effects I'd be happy to.

I'm keeping it cropped really short, partly because it is too thin to look good at the moment but also so that the cream and lotion can penetrate more effectively. I just love the soft prickle of my skinhead hairstyle as I move my hand across it. Am in danger of wearing it away with too much stroking!