Scarring alopecia... just been told I have it

[WordsearchKween]

Name change & posting here for traffic.

I've had a diagnosis this week of Lichen Planopilaris. A type of irreversible scarring alopecia.

I'm reeling. Dermatology (nhs) aren't calling me back for 6 wks according to the letter but likely to be a lot longer than this given waiting times where I live.

Has anyone been here? Willing to share experiences / advice?

I've not spoken to a soul about my hair loss journey so far beyond medical professionals. I sure people have noticed but no one has said anything to my face, and I'm grateful because honestly it just makes me want to cry & I know it'd all flood out if I had to talk about it. The poor GP & Derrma consultant got cried a river when I spoke to them. I have literally no one to discuss with or support me in RL. LP to 2 teens. Feeling really vulnerable right now.

I have also been diagnosed with this, I know it as frontal fibrosing alopecia. And also another type of hair loss which I can’t remember now.
I had one band of hair loss and luckily so far it’s stopped there, along with the generalised thinning.
I was given two lots of cream/fluid to apply but they make no different to me. I was also offered an anti mosquito medication that can occasionally affect your eye sight. For now I’m not taking it.
Dermatology dropped me after that, so I’m not using anything at the moment. Yes it’s crap, but my DM died at a younger age than me, so I’m glad to just still be here,

Yes I’ve had FFA for 25 years. I have lost a significant amount of hair over that time and have worn a wig for over 10 years. I don’t take any treatment although I do take hydroxychloroquine (the anti-mosquito medication above) as I also have Sjogrens, another auto-immune condition. Apparently it’s common to find people getting more than one autoimmune issue (this alopecia is thought to be one of those). There’s at least one Facebook support group.

I was upset in the early stages but had a lot going on in my life, it just seemed like another obstacle to try to overcome.

I'd not heard of Scarring Alopecia OP but I have Frontal Fibrosing Alopecia . I thought it sounded similar and having googled it I see they are variations of the same thing.

I really feel for you because it's quite devastating.

I was first diagnosed about 12 or 13 years ago. I attended a clinic run by the leading hair loss specialist in Scotland for a couple of years. I tried various treatments but certainly at that time it was all quite experimental and I was told whereas they might be able to halt the hair loss I would never regain the lost hairs because the follicles were dead.
Non of the treatments I tried worked. I refused to try the treatment that had the potential side effect of affecting vision.

So after a couple of years the specialist said there was nothing more she could do for me. I get a prescription for 4 full wigs per year. I am virtually bald and I shave off what little hair I do have. I have no eyebrows. I was offered the option of having eyebrows tattooed on but because I suffer allergic reactions to cosmetics I didn't go ahead with this.

I hope I haven't made you feel worse OP.
It's very possible there have been advances in treatment which I don't know about. I really hope there has been and that your prognosis is better than mine.

Best wishes to you.

@PersephoneParlormaid I'm sorry you lost your mum when you must've been quite young. I can understand why that would help in trying to keep a wider perspective.
@Bamboozled5 this is also a period for me too of other challenging situations I'm having to deal with, none of them easy, to have had this thrown in too feels cruel & unfair when there's so much other unfair crap I'm having to navigate. I've read stress could be a trigger which could fit for us both.
@Sospringlike your journey sounds tough. To go through all the appts & medication then still the condition advances. I'm sorry you had that outcome.

Thank you all for sharing. I really do appreciate it.

Sympathies, OP. I also have this and have a gradually increasing patch on the top of my head. I'm fortunate that I have thick hair, so what hair is left covers it to some extent, although it is still pretty visible (particularly as I'm small so people can look down on it!). I've been prescribed dermovate lotion to help keep it at bay. I have to say, though, in my case it is one of a number of problems, and a more "minor" one at that, so I don't dwell on it too much!

@ThingsAreNotWhatTheyWere I am short also argh.

I currently use dermovate scalp lotion applied 2x wk, and nizoral shampoo. Still have red angry skin, still loosing hair.

While I was waiting for diagnosis I didn't want to change my treatment until it was targeted at my condition but I have also been prescribed a steroid shampoo Etrivex, a Calcipotriol / Betamethasone dipropionate foam & Cocois ointment. Not used these yet as it was too much info to take in at my derma appt about how to use, how often to use, which meds to stop. The info on the script says use each every day, which can't be right! I'd spend all my feel time applying or washing / drying hair.

Bumping for exposure for any other experiences willing to be shared 🙏

I have frontal fibrosing alopecia. I have no eyebrows and a wide band of hair missing around my face. I always wear a hat or a wide headband when I'm out. I was pretty horrified when it first started but I've got used to it now and so have friends and family. I am in my 60s though and so I have friends dealing with worse stuff. My GP took bloods to rule out any deficiencies but I've never tried any treatments as it was pretty obvious that none of them worked. I could get a wig but I'm oudoorsy and I think I would find it hot and itchy.

Hope you also find solutions that work for you, OP.

I wear a hat out of doors most of the year round, to keep my head warmer in the colder months and protext against sunburn in the wamer months. My eyes are also very sensitive to sunlight, so I wear a hat with a widish brim.

I wear a wide brimmed hat too. And sun reactive glasses. In my younger days (50s!) I thought of getting eyebrows tattoed on, but my kids were horrified (probably quite sensibly). Now I wear glasses all the time I think that kind of covers it.

OP, my kids were never embarrassed at all about my hair loss. My DD used to sometimes stroke the shiny scalp skin and she has opinions on my headbands and sometimes adjusts them. But I allow that!
Lots of celebs are quite open about their alopecia, which is cool. And lots of young sporty people wear massive headbands including premier league footballers, so I'm grateful to them for normalising that!