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Comment by Stacey on February 15, 2013 at 4:03pm

Thanks Susanne, I've noticed increased activity during my period, yes I'm only 34 but was wondering in this coincide with early menopause. I havent lost much yet just alot of thinning on both sides and around the hairline. Have you given up Gluten altogether? I have started to drastically reduce my intake of gluten but think it would be hard to totally block it out. I also had a breast cancer scare last year which needed a biopsy- again I believe this is probably again down to hormone imbalance.

Comment by Susanne on February 15, 2013 at 3:25pm

Jules - That's interesting about the melanoma. They got mine just in time so I didn't have to have anything beyond a wide excision and sentinal node biopsy, which was negative, thank goodness. It's another thing that takes you for a wild ride in your head, isn't it? I'm going to tell my onc about this the next time I see him. He does research with Melanoma, as does my dermatologist. I'm guessing our immune system is somehow to blame for it all. I teach at university and am also concerned about being in front of people. The whole scarf look doesn't really suite my style. Maybe I'll become more of a hippie, then I can wear the scarf. Nah. Probably just a wig. Alice, I'm so glad your husband is supportive.
Stacy, I have had visible little sores but none since I got off gluten. Still the past few days I've had itching and some sore spots. It seems to gear up a bit right before my period. Yes - I am still getting that, but I can't imagine that's going to go on much longer. So I think hormones are at play as well. I think FFA is just used as a catch-all to describe the fact that the hairline is receding. They do biopsies, but there is no result which says "this is FFA". It's purely a description of what's happening.

Comment by Stacey on February 15, 2013 at 1:58pm

Sorry- I feel bad not being diagnosed but its so frustrating just being fobbed off and then having to wait for appointments to come through whilst your hair and scalp is constantly changing. I feel like Im having a bad week. My scalp was so sore on Tuesday I couldnt put a hood up. Its better now but still has a very sore spot, my husband says it looks like a raised lump redder than the rest of my scalp. I can't really see it.

My question to those diagnosed with LLP or FFA what are your symptoms? Do you get visible sores? My latest one is 1cm into my hairline, My loss initally started after a sore about 18 months ago in the temple area and although my hair has thinned since I've not been overly aware of anymore spots.

I currently am prescribed bettamousse and betnovate scalp but planning a docs appointment to ask for more help maybe clobetasol instead.

Comment by Alice on February 15, 2013 at 12:13pm

Like you Susanne, most of my friends know about my FFA. My husband is very supportive. Even though he was going bald at age 30, when I married him, it never seemed to bother him at all.

Ellen, what is the medication used for FM that they are trying for FFA? I've had FM for years but don't take any meds, just getting by w/ lots of rest, yoga and a Jacuzzi tub.

Here's my thought for the day:
I don't have bad hair days.
Every day I still have hair is a good day.

Comment by Heidi Short UK on February 15, 2013 at 11:04am

Sorry I've just realised I have commented to yesterdays news not todays! Anybody else suffering from a lack of brain!!!X

Comment by Heidi Short UK on February 15, 2013 at 10:57am

Hi Suzanne I think you are right non of us knows, doctors included!I must admit now I know its not all going to fall out over night I have come to a point of acceptance. I'm unhappy its happening, but at the moment its not ever so noticable, unless its windy, and then I wear a hat. I fiddle with it alot when I'm at the gym because when I sweat alot my fringe is so thin it sticks to my face, which isn't attractive! So at the moment I'm ok and if it gets alot worse then I will have to deal with it when it happens but I'm not going to worry because it might not get alot worse! ( I say with my fingers crossed!!)
It is so good having this web site!x

Comment by Jules UK on February 15, 2013 at 9:23am

Susanne, like you, I had a melanoma removed, at about 38. Also a carcinoma a couple of years. Coincidence? Maybe not relevant to FFA. Also, like you, I have told people about this. Not shouting from rooftops, but being open if they ask, since I decided to leave my job. This wasn't something I could face in front of a school full of girls! So something positive is that I can look for a change of direction.
Echoing the trend of recent posts, my husband has said all along that I shpuld just let this run its natural course and get to the wig stage. I'm beginning to come round to that thinking too.....
Xx

Comment by Susanne on February 15, 2013 at 8:52am

It's true, Rebecca, it is only hair, but that's huge. My friend told me yesterday that of several cancer patients she has known, one of the biggest deals for them was the loss of hair. She gets me. Unlike many of you, I've told just about everyone I know (and am fairly close to) about what's going on. It's just always been my way of coping. I figure it I put it out there, then a) everyone knows why I'm crazy sometimes and b) maybe I'll learn something along the way. Thinking about how lucky I am not to be losing my breasts, when so many more women have that experience, does put it in perspective, but it's okay for us to have bad days feeling sad, angry, despondent about what is happening. It's happening to us. I've had a serious cancer scare in my life - melanoma at the age of 40 - and I'm lucky to be alive, but this is STILL freaking me out. I so appreciate everyone here sharing her story. We don't know why this is happening to us, but I do know it's not our fault. I strongly suspect it's a combination of hormonal imbalance and autoimmunity. Rebecca, when I was first diagnosed, my husband started mentioning what it was like when he lost his hair. I calmly told him to never speak of this again in the context of my hair loss. The second time he brought it up, I got pretty pissed off. The third time, all hell broke loose (in a car!) and I think he finally got the message:)! He's actually an amazingly supportive man and will love me no matter what - I count my blessings every day - and it sounds like you have a supportive husband. We're lucky. I hope you all have someone who can support you through this - a husband, a partner, a family member or a friend. Have a good weekend, everyone.

Comment by ElleMN, USA on February 14, 2013 at 5:07pm

I had an appt with my dr on Monday and was feeling pretty down before I went in there. I talked with her about stopping the steroid injections and just letting nature take it's course but she strongly recommended keeping up with them to reduce the inflammation around the hair follicle in hopes of saving them. Eventually, hopefully, FFA will burn out. The inflammation is happening below the skin surface so the topical stuff doesn't get to where it needs to go; she suggested the same goes for the fungal treatments--they treat what's going on on the surface but not at the stem cell level. I'm only 45 so I decided to keep going with the shots. In addition we talked about phototherapy (this might be too expensive for me so I'm not sure i can do it). I'm also getting a prescription for an oil that U of M is compounding; I'll post more on that after I get it; it's the liquid form of a medication used for fibromyalgia (anti-inflammatory to help with itch).

While I am just winging it with the treatment I still can't help but wonder what the causes are. I waffle between completely obsessing about it to just saying "f" it, there is nothing I can do and nothing I did wrong that made me get this. It just totally sucks!

Comment by KarenGinny - Iowa, US on February 14, 2013 at 4:14pm

I have not gotten any wigs or hairpieces. The idea of wearing one sounds so uncomfortable that I will probably try to wait until I absolutely need one. My hair has thinned somewhat all over with one thin patch in the back, and mostly bare along the hairline, but I style it with long bangs - fringe, in the front and try to cover it that way. and lots of hair spray! I just hate when I'm outside and the wind blows it all over and so I keep a couple hats in my car and at home if I need one. I used to do a group exercise class at my local YMCA, but haven't gone in a while since I don't want my hair flying all around for everyone to see. I'd rather just walk on a treadmill or outside with a hat on or exercise at home. I really hate that I have this thing I feel I have to hide. And I don't want to be mistaken for a cancer patient. :( I've really only told close family members and they seem to think it's no big deal, but they don't really know how it feels. They are all saying "it's just hair!" but if it was them, they would see it differently! and as for acquaintences I have no idea what they think, just that I'm having a really bad hair day! At least all of you here understand and I am thankful to have found this group.

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